Katie's Kidney Transplant Journey

New year and healthier in lots of ways but...

2010-02-16T07:23:00.000-08:00

I'm so grateful for who Katie is able to be now because of the transplant and for those reasons I try not to lament the problems that have come with it. We are still battling just about back to back bacterial urinary infections. We decided, with the medical team, not to treat them until she becomes symptomatic but that has eventually happened with the last two infections. Once she's symptomatic it stinks and of course takes longer to get better. I'm starting to think that we need to go back to treating her every time there's an overgrowth of bacteria instead of waiting until there are symptoms. Don't get me wrong, her symptoms are no where near what they could be, mostly pain and just feeling badly. I just don't know how we get out of this cycle. One of the thoughts I had way back during all the hospitalizations was to decreased her immunosuppression (IS) to try to reach a happy medium where she wouldn't reject the kidney but could fight these infections. However, that seems like it won't work. The level of one of her IS meds has been running very low, we've been increasing it to try to get it back to where they want it so it's been decreased without us trying. The other one has also been decreased twice since November so there's really nowhere to go with that one either... I just don't know what else we can or should do.

Bad blogger!

2009-12-20T08:27:00.001-08:00

My apologies for being a bad blogger. Time has just gotten away from me. I even let our big anniversary go by without a post! We're past the 1 year mark, can you believe it!!!

Back in November we saw the new peds nephrologist at UMMS, Dr. J. She is lovely and we really appreciate some of the different perspectives on peds renal care that she is bringing to the table. At the time when we saw her Katie was showing as having a large amount of bacteria in her urine, however, Dr. J has seen this in her bladder compromised renal transplant patients and said that at some point we'll probably have to stop treating them and consider it to be a colonization rather than an infection. This is one of the things I had been saying since we had gotten to that same point with urology before we got to the point of transplant. Dr. J and I discussed it and Katie's nonexistent symptoms of infection and decided there was no time like the present and we're not treating these over growths of bacteria unless she becomes symptomatic. Two other big changes took place in November as a result of labs as well. Katie's white blood cell count is too low (another clue we have that this over growth of bacteria isn't an infection) and this is likely due to some of her medication. So she was taken off of one of the meds for the EBV mismatch. Also we discontinued her prophylactic antibiotic since that seems useless. Finally, we reduced one of her anti-rejection meds (Cellcept). The other change was that we are now only doing labs once a month, that's a huge plus for Katie.

This month's round of labs has brought more changes. Her renal function is still steady as a rock so that's good news. However, her white blood cell count is still too low. We have reduced the Cellcept even more starting this week and have had to go up on her other anti-rejection med (Prograf) because that level was a little low, not too terribly just a little. She still has that over growth of bacteria in her urine but still shows no signs of infection. They do want to repeat her labs in 2 weeks but we'll be off for winter break so it will be a little easier to get that done. The stinky part is that in order to get a Prograf level we have to get up and to the lab early in the morning.

With the med changes over the past two months her med list is now down to 1/2 page! I can't remember the last time it was this short. It's almost memorizable again.

School has also seen some big changes for Katie as well. She seems to be making more and more friends everywhere she goes these days. She had her tri-annual IEP testing in the last few months and has been released from her IEP. We will move her accommodations over to what's called a 504 plan so she will still have things like her water bottle needs to be with her and extended time for assignments and such but this change paves the way for us to move her out of her current classes. Since she began with her IEP she has had to be in classes where there is additional adult support. These classes have tended to have more behavior issues as well as the additional learning issues and the behavior issues have been very distracting for Katie. We're hoping that soon after the new year she can move into a different team of teachers and transition into classes where the learning is more important to the students than in some of her classes now.

Thanks for your continued support and prayers!

She's 12!!

2009-10-18T15:20:00.000-07:00

We had the big birthday around here this past Friday and my babies are now 12.

On the health front Katie is doing well. She does actually have a UTI right now that we are treating. I'm a little concerned that we're into another string of UTIs. We have been considering switching her renal care over to Johns Hopkins. When we met with them they did say they have experience with transplant patients who have augmented bladders like Katie who have had recurrent infections. They have had to do some altering of meds or other things to get the infections to stop. However, if we do that we'd have to have appointments in the middle of the day (no mornings or afternoons until January) and school make up work is a big issue we're dealing with right now. So, we're not sure what to do at this point. It seems like missing a day a month shouldn't be a big deal and missing a day a month shouldn't be what makes us stay away from care that might know more about Katie's uniqueness but it just all has to be considered.

We are less than 30 days from the year anniversary of the transplant...

Update

2009-08-25T05:43:00.000-07:00

Sorry for the time between posts. Katie has labs every 2 weeks now. She had them on Friday 8/21 and we got the results today. Her Prograf level of low, it's 3.3 and the goal is between 5 and 8. I'm concerned about this because of the Prograf side effects and that Prograf is actually neprho toxic and we've already been through a Prograf toxicity that caused a biopsy. The biggest visible side effect is hand tremors which Katie struggled badly with immediately after the transplant. Every time we go up a dose the tremors get worse and with school starting this will be more of an issue. We'll discuss this with Dr. M when we see her next week and it will definitely be a point of discussion with Dr. N when we see her (that's the Hopkins doc we'll be seeing at the end of September.) Katie's creatinine is 0.8 which is great! Her white blood cell count is coming down. It's not too low yet and could just be a sign that we're not dealing with any level of infection, but if it goes too low they might have to adjust her dose of CellCept, one of the other immunosuppressive drugs she's on, since that's a known side effect of it. This is all quite the balancing act. As we get further out from the transplant the Prograf goal will lower and it's already lower because she received a living related donation.

So that's where we are. School starts next week and we're all hoping for a great year for Katie with no hospitalizations.

Still doing well

2009-07-29T12:50:00.000-07:00

Katie had another set of labs with urine culture on 7/24 and that culture result was no growth. It was at LabCorp and we know their threshhold is different than the lab at UMMS but it's still good.

Her Prograf level is giving us a bit of a problem so we're upping her dose and redoing labs this week again.

The orthopod said that he felt her back pain wasn't a result of scoliosis or kyphosis and that both are out of the treatment eligible range. He feels that her muscles are week and tight from lack of use from being sick and sedate for so long. He prescribed physical therapy. She had her first appointment yesterday and the physical therapist came to the same conclusions without knowing exactly which muscle groups the orthopod had named so that was comforting. Katie has exercises to do and will be going to therapy a couple of times a week for a month or so then we will reassess.

We stopped by the middle school today to give the nurse Katie's new PE restrictions which are tremendously lightened compared to her return to school last year, and much better than "no PE" which is where we were before the transplant.

Update

2009-07-18T12:08:00.000-07:00

I thought I should throw out an update for everyone. We had labs with a urine culture on 7/15 and saw Dr. M on 7/16. There is bacteria in the urine but it's at a low concentration so we're not going to treat it. Dr. M said of her patients who have had problems with UTIs after transplant it usually settles down after a while and the sometimes flares back up again later. I kind of wish she would have said she's been through this before with patients instead of us thinking this was based solely on Katie's unique anatomy... All of her other levels look good. She's down to one small dosage of one blood pressure medication which is a good thing.

On Monday we're off to see the peds orthopod doctor at Hopkins to discuss the scoliosis and kyphosis. And we finally got the appointment to see the peds nephrologist we want to see at Hopkins but it's not until September.

We have labs again on Friday 7/24 and then we're going camping as a family for the very first time, should be lots of fun!

Take 2!!

2009-07-01T11:38:00.000-07:00

It turns out we did get from there to camp without another UTI. That result reported below was actually from the stool culture we dropped off (we're trying to get Katie cleared from the contact precautions she's been on since February during every admission and that is done through stool cultures) and NOT the urine. The urine in fact came back as NO GROWTH!! That means there is NO bacterial growing in her urine! This is the first time that a UMMS sample has come back no growth since before the transplant!

How did this come about you ask? Well, Katie started having an icky side effect from the penicillin, and since it was amoxicillin that caused an over growth of something called Colostrum Difficile (C-Diff for short) and both are in the cillin family I called to see if we could reduce her dose or something. Well while looking at the report again, Dr. M's nurse realized the mistake. So we have stopped the penicillin, we're treating her bowel flora for the imbalance caused and...

WE ARE INFECTION FREE!!

How you ask when the stool culture did come back with a result... well all it said was "abundant growth" not a quantitative amount and with Katie's anatomy there's bound to be odd stuff in her system, as long as it's not too much, or causing symptoms, we are good to go!!

And finally!! that stool culture result was the 3rd out of 3 that we needed so, in the event we need to be inpatient again, Katie is free of the contact precautions!!

Tears of joy!

Nope

2009-06-30T12:26:00.000-07:00

We didn't get from there to camp kydnie without another infection. We took in a urine culture on Friday 6/26 and found out yesterday that it is growing Staph aureus. Luckily it is sensitive to some oral meds so Katie is on penicillin. We're worried that she might have some side effects from this med that might make camp difficult and not nearly as fun, so if you're so inclined some prayers for no side effects would be great.

We are working toward a second opinion. We have contacted one of the doctors at Hopkins who helps out with the weekend camp that Katie attends each fall. Unfortunately, it is taking some time to get her records to them which is frustrating but at least the ball is rolling.

HOME!

2009-06-12T12:21:00.000-07:00

We are home. The sensitivity came back saying that the bacteria was sensitive to an oral medication so they gave us a prescription and released her. We still haven't done anything to try to prevent the next infection so I'm going to work on pursuing a consult with another doctor. Hopefully we can get from now through Camp Kydnie without another infection!

2009-06-11T09:13:00.000-07:00

hi as you know I am in the hospital and so not happy and I cant go in the teen room or go anywhere other kids gather. I have to much energy and I want my dog tucker so bad I really want to just go home I so do not want a PICC I might and I might not I really want to have a extra fun summer but I do not know if the is possible.Please keep me in your prayers

Back in the hospital

2009-06-10T19:32:00.000-07:00

Monday Katie started having some cramping in her bladder/urethra. Tuesday it got worse and she also had some other symptoms of the infection so I thought it best to call Dr. M's office and she wanted us to come to the hospital and be admitted since the bacteria is only sensitive to IV abx. So we had dinner out and went in through the ER last evening. Dr. M wants to wait until the results culture we sent last night to be sure we're treating the right thing. I'm not sure why she feels that way since the last one we have was from UMMS. Anyway, she's on the schedule for Friday to get a new PICC placed. They're still reserving the right to cancel that. I suppose they might cancel it if the culture comes back saying a different bacteria that could be treated orally... who knows.

Katie is pretty miserable. She was supposed to start swim lessons this coming Tuesday but that can't happen now, even if she's on oral meds we can't be sure she'd be able to swim due to potential side effects of the abx. We're trying to talk to the docs about her qualify of life with all these infections because we're obviously frustrated and Katie isn't handling things well.

I'll try to keep you posted but I'm also considering adding another author to the blog who can post for me because I hate to leave Katie to go to the computer room because Katie can't come there due to still being on contact precautions.

Same story

2009-06-06T14:42:00.000-07:00

That first urine culture was negative as I said but the followup one that we did at the hospital came back positive. Greater than 100,000 in growth again. It's another new bacteria which we kind of think is a good thing, at least we're really killing off the bacteria of each infection now. Dr. M doesn't want to treat this infection she just wants Katie to try to increase how much she drinks and make sure she caths when she's supposed to. We'll do another culture this coming Friday and go from there.

Only Good Stuff

2009-06-01T17:18:00.000-07:00

First of all, we got the results from Katie's urine culture from Friday 5/29 and it came back with "no growth." Woo hoo! We're doing another one tomorrow and if that one is clean we'll really feel like we're in the clear... at least for now.

Secondly, I just have to share what happened today. I was sitting at my computer.. playing on Facebook, and a new email from David Reivers, Corbin Bleu's Dad. He wanted to know how we were doing and follow up on our Disneyland experience. We are all just so amazed at how wonderful they are. I emailed him back to tell him it was wonderful and sent a couple pictures and I congratulated Corbin on is WB series getting picked up for the fall. And gave him the above health related info on Katie. He responded immediately saying that he and Corbin are so happy for Katie and that Corbin is excited about his show, but disappointed that it won't be a show his younger fans can likely watch. They are just genuine good people!

Pics

2009-05-26T18:01:00.000-07:00

I think this link will work... click here.

The California Trip Report

2009-05-26T16:56:00.000-07:00

Sunday 5/17/09

4:30 a.m. The limo arrived in our driveway. We were all packed and ready. During the limo ride both James and Katie had the chance to play with the buttons and switches in the limo, turning lights on and off and raising and lowering the window between us and the driver.

We arrived at the airport, checked our luggage, went through security and proceeded to our gate. After finding the gate we got some breakfast.

The first leg of our trip was long but exciting. We landed in Phoenix, adjusted our watches, made the long trek to the gate for our next flight, grabbed some snacks and were ready to board our next flight. The second leg of our trip was very short and uneventful.

We were met at the baggage claim area by a Make a Wish (MAW) volunteer. She had a gift for Katie, helped us get our bags and accompanied us to the rental car office. After working out the issue or keeping the rental car for the post wish portion of our trip, we followed her to our hotel.

The Sheraton Universal Studios was very lush and elegant but the drive there was our first glimpse at the less than glamorous Los Angeles/Hollywood/Studio City.

When we checked in we were notified that there was a fax for us, we received it and opened it immediately because we knew this was the details to our lunch with Corbin. The fax said that we were going to be picked up at 12:15 p.m. the following day, by limo, and traveling to Burbank to the Elephant Bar Restaurant. Our room at the Sheraton was on the 17th floor and offered an absolutely beautiful view of the surrounding area and mountains. My biggest surprise about the area was the constant backdrop that is created by the mountains. Wherever you go in the greater LA area the mountains create a constantly visible backdrop.

After we settled into our room and checked out the view we realized we were hungry. We got directions and instructions from the concierge for how to get to Universal City Walk. For this first trip we took the shuttle from the hotel and we ate at the Hard Rock Café. Everyone enjoyed the meal and the atmosphere even though my chicken was under cooked and had to be returned. Everyone except me also found a great t-shirt.

Before retiring for the night, Steve and James had to make a trip to Target to get some supplies for Katie and also a swim suit for James since I had forgotten to pack one, and we took a brief dip in the neighboring hotel’s pool as ours was closed for a private party.

Monday 5/18/09

Monday morning came early for us because we were still on east coast time. When the hour was respectable, we went down and had breakfast at the restaurant in the hotel. We all ordered something but then shared with everyone else, it was very nice. We went back to our room to put on the finishing touches. We were ready way too early so we walked around the hotel a bit and sat in this cool cabana area in the hotel lounge. The MAW intern who was accompanying us arrived a bit early with the limo. We chatted with her briefly and then took some pictures at and in the limo before heading out to Burbank. On the way to the restaurant we saw the Nick Studios which was cool for James.

Once at the Elephant Bar Restaurant we took some pictures outside and with the elephant himself inside. We were seated at our table and then the butterflies really started flying for everyone. Katie had decided she wanted Corbin to sit across from her and chose a seat that made it hard for her to see people coming into the restaurant. We knew that our reservation party included Corbin and one other person so Katie was speculating that maybe he would bring his Dad since she had read that they are very close. I saw Corbin coming through the restaurant towards us and told Katie he had arrived. He came over to the table, greeted her immediately and offered a hug. Steve asked if he could take pictures and started snapping. He had in fact brought his Dad, David Reivers and everyone was introduced to each other. Everyone sat down and the conversation started and never stopped. Katie had brought along a list of questions and topics to discuss along with several pictures to be signed and we had bought a jump rope to be signed (due to a movie Corbin did called Jump In.) Corbin was amazing with Katie, he was attentive but included everyone. He let her talk and told great stories. He did not disappoint us in any way! He told the story of the first time he was recognized. It was a few days after the first airing of the first High School Musical, he was in Hawaii filming the second season of Flight 29 Down, he attended a large carnival with the rest of the cast and his Mom, walking around without a care in the world when suddenly girls were screaming and crowding him and it got so out of hand that the cast had to be wisked out of the carnival by security. David shared that Corbin’s Mom called him that night saying “you’ll never believe what just happened, we’ve got a situation here.” Corbin seemed honestly impressed with how much of a fan Katie had become. He asked if she knew his favorite food and when she said ricotta balls he literally said “Get Out! Most people say French fries and I love them too but really it’s my Mom’s ricotta balls.” He began speaking of a movie that he and his Dad are producing and starring in that is in post production and when Katie said the title he again was very impressed. They were both very genuine and generous. We were all so nervous after they arrived and having to choose our meals, David was kind enough to order an appetizer for us all to share. After we ate lunch (which was delicious by the way) we ordered dessert and the conversation just kept flowing. Later James said that we all could have sat there and talked forever. Steve, Corbin and David compared notes on New York pizza and sausage as they had previously lived in Brookyn. Corbin told us where his favorite ice cream places were which happened to be around the corner from the restaurant. We talked about the rest of our week in the LA area and they were both very excited for us.

As lunch wound down Katie took out her things she had brought for Corbin to sign. He was again very gracious and generous. In addition to the jump rope Katie had a packet of pictures of Corbin. She asked him to choose his favorite to sign and he said “I’ll just sign them all, if that’s ok with you.” He didn’t just sign his name he personalized each signing. Finally we opened the 2009 HSM calendar that the MAW chaperone Tina had brought along as a gift for Katie. First, he wanted to sign her birthday month and coincidentally October happened to be the month with the picture of him by himself. He started by asking the date of her birthday and writing “Happy Birthday Katie Love, Corbin;” then he signed the picture.

After more than 2 hours David tapped Corbin and reminded him he was late meeting his trainer. He excused himself to call his trainer. When he was finished it was time to start our goodbyes. There were more hugs all around. Corbin hugged all of us, Katie, James, Steve and me. David hugged us all also. We took a final round of pictures and then Corbin and David left the restaurant.

We followed them out shortly thereafter and got back in the limo. Tina asked if there was anywhere else we wanted to go and Katie asked if we could drive by the Pinkberry and Cold Stone that Corbin frequents and had suggested we visit. They turned out to be in a courtyard type shopping center so we got back out of the limo and took pictures of both places and Katie got a small ice cream from Cold Stone, Corbin’s favorite flavor of course.

Not long after getting back to our hotel room the phone rang. I answered it and it was David, Corbin's Dad. He said that he and Corbin had enjoyed lunch with us and wanted to make our Disneyland trip even more special. He explained that he had called their contact at Disney and arranged for our park tickets and a tour guide. Needless to say we were thrilled and excited. He asked me to email him our contact information so he could forward it to Disney and of course we complied. He said we should expect a call from Disney to set up the details.

We took another quickish swim in the hotel pool after returning from lunch. Later we decided to drive down to the intersection of Hollywood and Highland Boulevards. We walked from there to Graumann's Chinese Theater, looked at the stars on the sidewalk, took some pictures. Saw the Hollywood sign and took a picture of that. By this time it was starting to get dark so we got dinner there in the center and then headed back to the hotel for the night.

Tuesday 5/19/09

MAW had arranged for us to go to Universal Studios on Tuesday so we walked over and had breakfast at City Walk and then went to Universal. There weren't too terribly many things that Katie and I were interested in doing there but we did go to the Animal Actors show and the studio tour. Katie wasn’t fond of the studio tour because of the simulated earthquake, bridge collapse and flood. After the tour we split up and the boys went off to do a couple of other attractions, Backdraft and Special Effects. Katie and I played some games, visited some characters and did some shopping both in the park and out on City Walk. After the boys joined us Katie had a caricature drawn that turned out really beautiful!

We had planned on finishing up with some Hollywood sites on Tuesday afternoon but since we had been disappointed with the seediness of the sites from the day before we all decided to leave the rest of Hollywood in our imaginations. We had dinner at an interesting open air restaurant just outside of Universal called Saddle Ranch Chop House. The kids got in the pool again for a while and we called it a night.

Wednesday 5/20/09

Wednesday was moving day. We had one last breakfast at the hotel, packed up our things and loaded them into the rental car. First stop was the nearest Avis rental car office so we could turn it in under the MAW contract and rerent it in our names. That turned out to be relatively painless. Then we drove down to Anaheim. It was too early to check in to our hotel so we drove over to the Disney parks and went into Disney's California Adventure.

We decided to go to the left upon entering the park into their Hollywood section which contained one of our favorites from Disney World, the Muppets 3D Movie. Our first only in California ride was the Monster's Inc. ride which was very cute. Then it was on to the Twilight Zone Tower of Terror, again Katie rode but was less than thrilled but the rest of us loved it. Then we visited the Disney Animation building which housed several interactive displays and attractions, one of which was a drawing class where you are instructed step by step in drawing a Disney character. James and I had done this on our last trip to Disney World and had drawn Goofy. This time we drew Grumpy. Then we had a snack and as we were headed to the Bugs Life themed area we happened to catch the High School Musical 3 street party/parade so we stopped to watch that. Once over in the Bugs Life area we found more Katie speed type rides. She and James rode just about everything in that area and enjoyed them. Then we were off to the Paradise Pier section of the park. We hit a few rides and played some games before it was time for the park to close for the night. On our way back to the parking lot, we stopped for dinner in Downtown Disney. Our original plan was to eat at the Rainforest Café (one of the least crowded places in Disney World) but the wait was almost 2 hours so we scooted next door for the 15 minute wait at the ESPN Zone. After a bit more shopping we were ready to call it a night.

Earlier in the day we had gotten a phone call from a Disney representative to give us the details of when/where/how to meet up with our guide. We were to go to Disney's Grand Californian Hotel and Spa, give the cast member at the gate house our name, they would be expecting us, they would park our car for us and we would meet the guide there at 9:00 a.m.

Thursday 5/21/09

Obviously we were all very excited to get going on our last two exciting days in California. Our hotel in Anaheim had a free continental breakfast so we just grabbed something quick there each day, it wasn't the greatest but it worked. We arrived at "The Grand" as they call it, a few minutes early. In true Disney fashion they were in fact expecting us at the gate, and at valet parking. Within moments of our arrival our guide greeted us. Her name was Cathy and she was just lovely. We discussed our plans and goals and off we went. The Grand actually has entrances from the hotel onto the Downtown Disney area and also directly into Disney's California Adventure Park (DCA). Since we needed to get a wheel chair for Katie (she's having significant foot, knee and hip pain that we're going to begin assessing this week) and DCA wasn't open yet, we headed through Downtown Disney to Disneyland (DL.) We picked up a wheelchair and decided to hit a few attractions in DL until DCA opened up fro the morning. The Jungle Cruise there is dramatically similar to its counterpart in Orlando. However, the Enchanted Tiki Room show is completely different at DL. The one in Orlando has been rethemed using character birds from the Lion King and Aladdin, the one in DL is still the traditional show.

The proximity of the parks is really an asset. The entrances to DL and DCA are just across a walkway from each other. You are able to go through security just once and travel back and fourth between the parks quite easily. So once 10:00 came around we went across to DCA and picked up where we had left off back in the back on Paradise Pier. Steve, James and I rode California Screamin' and we all rode Toy Story Mania and absolutely loved it. The kids and I rode a small ride called the Golden Zephyr and then James and I along with Cathy road Mullholand Madness. We had snagged lunch reservations at Ariel's Grotto Princess character meal. The food was delicious and having the princesses come to the table is always fun.

After lunch we did a few more things and then headed up to the front of the park as we had made arrangements to see the 4:15 p.m. showing of the stage show Aladdin. It was cute but not as impressive as some other shows I've seen in Orlando.

We finished up a few things in DCA before heading over to DL for the evening parade. Since we had Cathy with us we were able to utilize the reserved seating area for the parade. Both kids were pulled up to dance in the parade (it's really more of a street party as it stops in 3 places throughout the park to "perform") which was fun for them. After the parade we headed to the Toon Town area of the park. I have to say this area was really wonderful and much more visually impressive than its Orlando counterpart. I wish we had pictures but it was getting dark and we weren't able to get any distance pictures. In order to backdrop the buildings so that they didn't appear to be up against a parking area, they have installed these high backdrops of cartoon looking hills. Since the whole areal is up hill from it's entrance point, those hills are visible directly below the sky so it's very seamless and visually just really cool looking. We went through Town Town, walked through the homes of Mickey, Minnie, Goofy, Donald and Chip & Dale. We rode the Roger Rabbit themed ride and took some pictures in one of the various vehicles scattered around the area.

After planning out most of our plans for the following day we called it a night.

Friday 5/22/09

Friday morning we met Cathy at The Grand again, took the monorail from Downtown Disney into DL and to the Tommorowland area. We rode Autopia (a fav for Katie), Finding Nemo Submarine Voyage, Buzz Lightyear Astro Blasters and Space Mountain (less Katie). We took a lunch break and then hit almost every attraction in Fantasyland and then the few things on the other side of the park that were of interest to us, Winnie the Pooh and Pirates of the Caribbean.

We finished going through everything once with lots of time to spare so we were able to repeat a few things that were important to the kids such as Autopia, California Screamin' and Toy Story Mania; we even caught the parade over in DCA while the boys took off to get James' caricature. Finally, our last event was to enjoy the fireworks show at DL. We had reserved seating for that as well and it was a very nice show and quite a nice way to end our time at the Disneyland Resort. After the fireworks we walked out of the park with Cathy and said our thank yous and our goodbyes and we headed off to retrieve our car from the valet at The Grand.

Saturday 5/23/09

Our final day was a full travel day. We had to get up early to get to the airport by 9:30 a.m. Since we weren't sure about the famous L.A. traffic we left ourselves 2 hours to get there and of course it only took an hour. While sitting to eat breakfast at the airport I spotted an actor from The Young and the Restless, Joshua Morrow. He was clearly trying not to be recognized and I couldn't think of anything to say that wouldn't sound creepy or corny so I didn't approach him. Later I realized that I had the previous week's Soap Opera Digest in my carry on bag and he happened to be on the cover. At least I was able to show my family so that they all said "oh yeah, that was definitely him." The flight home was the same as the one out there only in reverse and with a different stop over. As we walked onto the plan from L.A. to Charlotte, I recognized a member of the Fox Sports broadcasting team Chris Myers. After not approaching Joshua Morrow I couldn't let Chris Myers get away. I daintily nudged his arm and said hello. He happily said hello back and asked if I was going home or if I was on my way to the race. I had to sadly reply that I was going home… unless I could tag along with him to the race? He chuckled and I continued on to my seat. We landed a little late with that flight so I was stressed about having enough time to get to our connecting flight but we made it with a little time to spare even. The last flight was short, under an hour. The total elapsed travel time was about 7 hours but with the time change I'm not sure how long it felt.

When we got to baggage claim we called the limo company that MAW had arranged and we were picked up in a Ford Expedition limo as our last excitement from the trip.

We all enjoyed our trip quite a bit. Corbin Bleu was amazing and completely lived up to all of our expectations. It was definitely interesting to see some Hollywood sites; and getting to experience the Disneyland Resort is something I had never imagined being able to do.

I will try to get pictures up on here but in the meantime here is a link to a lot of them at Snapfish. Click here! You may have to sign up for a free membership to see them though, sorry.

Final plans are made

2009-05-16T02:39:00.000-07:00

It has been a crazy week. At one point we thought that maybe Corbin would cancel because we are the only family that has been able to arrange to travel to meet him; but, instead, it is going to be amazing. We will be meeting with him by ourselves. Katie will have his undivided attention (if he only knew the booklet of questions and discussion points she as.) We are thrilled. Make a Wish has been wonderful even though this has been one of the most rushed wish plannings they have been through at our local chapter.

We are getting picked up by Limo tomorrow morning (Sunday 5/17) and flying to Los Angeles. We meet Corbin on Monday but we won't receive the details of that until we receive a fax at the hotel that morning. We also have passes to Universal Studios for while we're there. When we leave the hotel that MAW is providing we will be moving down to Anaheim and spending a few days at Disneyland and Disney's California Adventure.

We bought a new camera just for pictures of this event and trip so I'll be sure to post those when I get back. I'll probably post them to facebook as I've heard that you don't need to be a facebook member to view pics but I'll decide that when we get home.

Exciting news!

2009-05-11T11:56:00.000-07:00

I'm going to start with the best news. Make a Wish called Saturday night and providing I can clear up one small remaining obstacle we will be headed to Los Angeles next week to meet Corbin Bleu for Katie's wish. He is inviting all of the kids on the list to meet him (at least 6) to LA and the visit will include lunch with him. Katie is very excited.

I've been working on medical and other obstacles this morning. The newest infection is a brand new to us bacteria and is treatable with oral abx but the one that we're on isn't a top choice so we're going to switch to a new one tomorrow. Given our impending trip, and that we're going to be doing 14 days of oral abx, we're going to have the PICC line (long term IV) removed. It will be more at least 3 weeks from now that we would need to have it put back so that's a nice long break for her and her arm. It will mean an inpatient stay if we have to get another one but we've all decided it's worth it.

Both doctors are fine with her flying and traveling so far away.

The final small obstacle is that both kids are participating in a volunteer program at the library this summer where they read to younger children (there may be more involved will find out tonight.) The orientation is tonight and then the training is supposed to be next Monday but we'll be away. If we can take care of that at another branch then we'll be all set to fly away.

This is really a blessing for Katie, she's been really struggling with everything and so we're hoping this will be a thrill and a break from our surroundings.

We're also going to try to extend our time in LA so that we can go to Disneyland and see the sights in Hollywood.

Thanks for the prayers for my new niece Kacie, she's on the mend, was moved from the ventilator to just some supplemental oxygen this morning.

New problems, new bacteria

2009-05-08T11:33:00.000-07:00

Katie was still dizzy this morning. We called Dr. M and she wanted us to be evaluated by our pediatrician's office.

LOVED LOVED LOVED the pediatrician we saw! (he’s new to the practice and we’ve only ever seen our regular docs and the nurse practitioner) He was thorough, not bewildered by her other issues, took them into account without letting them cloud his judgment, he heard her heart murmur (lots of people don’t hear it so I usually don’t mention it and did the same with him and then realized he was talking cardiac stuff so I should and he was relieved because he had heard it and thought it might have been new), talked to me like an educated parent.. seriously I cannot say enough about him! He said he still thinks that it looks like a medicine reaction, either to the cold, or we also increased her Ditropan dose to help with some bladder cramping, or a combo thereof. He said it doesn’t look like urosepsis (sepsis is when an infection through your whole body instead of being localized.) Based on her symptoms, he doesn’t think it’s anything neurological or a seizure or anything like that. He said he would further evaluate it if it lasted 7-10 days starting with an EKG, repeat echo (she had one in September or October of 08), and a tilt table test. While we were there he got the culture report from Lab Corp. The final culture result still isn’t back but they are saying it is a gram negative rod bacteria meaning it is not VRE or the most current bacteria which was a form of strep. The only time Katie has had a GNR bacteria it turned out to be pseudomonas which we used to call the Voldemort bacteria because it’s only treatable by IV meds (with the PICC it’s not so much of an issue but the drugs to treat it, if memory serves, are usually of the nephrotoxic type which might require inpatient level monitoring.) However, Dr. Kevin doesn’t think she has Pseudomonas because he would expect her to be substantially sicker especially given her immunosuppressed state. So, he wanted to start her on something broad spectrum that is likely to cover GNR bacteria. He called Dr. V who agreed with his choice of oral meds and asked that a loading dose of another med be added. I then said “ok but this is still pending sensitivities because if this is pseudomonas neither of these meds will cover.” He agreed but repeated that he doesn’t think it is pseudomonas…

So we have an order into peds at home to send us out a dose of Rocephin and we have oral macrodantin to start this evening. The other question hanging out there is the bigger picture, are we just going to continue to treat these infections as they come up or is there some overall plan to clear this up. I'm on the fence about whether I should call Dr. V's office to have that conversation now or just wait and let Steve have it with him in person when we see him next Friday...

Also, those of you so inclined, please say a quick prayer for my new niece Kacie. She was born a smidge early this morning and is having some minor struggles. I wish I could be there with her parents but I have to be here with my struggling girl.

Down swing again

2009-05-07T18:42:00.000-07:00

We had regular renal labs on Tuesday so we did a urine culture too (it's on the lab slip and it's just easier to do it rather than explain why we're not.) As soon as I saw the sample I knew it wasn't going to come back no growth. Sure enough today we got the preliminary report and it already shows greater than 100,000 colony forming units. It was processed by Labcorp and for some reason they haven't identified the bacterial and it is still a preliminary report even though it's been 48 hours. Peds neph called us and faxed the report to peds surg. I called peds surg but they don't know what the next step is. I think the nurse practitioner I talked to was going to email Dr. V. I'll call them again tomorrow since he'll be in the hospital.

Katie came home from school today because she was dizzy and weak. We were hoping it was a reaction to some OTC cold medicine but she was still dizzy and weak this evening. We're a little concerned but we're hoping that after a good night's sleep she'll be better. If not, we'll need to start trying to identify what's causing this new problem.

Doing better than we thought

2009-04-27T05:08:00.001-07:00

Katie is doing really well with the Foley overnight, much better than we expected. She's also doing much better with her sleep issues, which is amazing considering we added the Foley to the mix. We've added a few things to help with that, she has a special essential oil blend that she uses under her nostrils, we read a story (or part of one) each night, and we have a set of walkie talkie's that she and I each have overnight so she doesn't have to yell out to let us know she needs something.

We're doing the abx until 5/8 so we still have a ways to go on that. And the Foley is until the urine culture after the end of the abx so... I have to get working on an insurance issue with the Foley's and bags this morning.

Sorry, there's no good news

2009-04-24T17:12:00.001-07:00

Yesterday I called in and found out that Katie's urine culture from 4/21 was positive for alpha haemolytic streplococcus. We were to wait until our appointment with Dr. V today to discuss treatment and other plans going forward. This bacteria is similar in some way (that we don't clearly understand), we're treating with the same med as before, tigecycline, so we're back on that through 5/8 which I think is 14 days. They have also asked that we use a Foley catheter (one that can be left in place, you inflate a balloon to keep it from coming out) draining to a leg bag overnight. This of course is a very disturbing idea for Katie and of course I don't blame her, it's going to stink. We had just made some progress on her sleep issues and I'm sure this will set us back.

It's still a tough road.

Not much news yet

2009-04-22T18:22:00.000-07:00

I don't really have much news yet but I wanted to bring you up to date.

Our biggest issue when we came home was that Katie is really having trouble sleeping. She has difficulty getting to sleep and also staying asleep. We've been trying some aromatherapy and some mommy and daddy time before bed. Some nights are better than others. Tonight she has a new aromatherapy combination to try out.

She is also having some noneducational struggles in school that are making her feel very sad so we're working on some possible solutions there.

On the medical front, we saw Dr. M on Tuesday (4/21) and Katie's creatinine is back down to 0.7 which makes us all very happy. We also had a urine culture dropped off that day the results of which will be back tomorrow (Thursday 4/23.) We see Dr. V on Friday for a surgery followup. If tomorrow's results aren't good we will also discuss what to do from there.

Home again

2009-04-12T16:29:00.000-07:00

We came home yesterday afternoon. Katie is struggling quite a bit with eating enough so that her pain meds don't make her feel sick. She's being very difficult about taking suggestions from those of us who have been through these things. She's also very upset about having to remove the dressings from her incisions. She'll finish her abx on Friday and is already scheduled to see Dr. M on Tuesday 4/21 so she'll have labs and a urine culture that day as well. So there won't be any real new news until either then or Thursday 4/23.

Post surgery

2009-04-10T04:11:00.000-07:00

Katie had her surgery yesterday. It was a confusing day as far as timing because everyone who talked to us had a different story about when she would go in to surgery. She went in around 11:00 a.m. yesterday and although Dr. V had thought the surgery would take about 2.5 hour it actually took 4 hours. He said "I don't want to operate on her anymore it gets harder and harder every time," and then he chuckled. The extra time was really in getting through surgical adhesions and her unique anatomy to get to the parts he wanted to remove. He said the native kidney was visibly inflamed and adherent to everything around it. Katie was much more groggy after the surgery than she usually is, in fact she wasn't even close to being awake when we went back to the floor. She had a different anesthesiologist this time, the newest one in the department, and Katie had had some stress about waking up during the surgery so I think they tried to make extra sure that that wouldn't happen. But by the time James and I came home last night she had eaten a popsicle (although it was melted a bit we fed it to her with a spoon), and some jello. She called me later when she had eaten one of the seasoned potato wedges we had bought earlier so she's on her way.

James and I are on our way back out this morning. Dr. V wants her to be on 10 days of abx and the orders for that to be finished up at home are already in the works. So the issue keeping us inpatient is Katie's pain. She has a patient controlled pain med pump for now, the same kind she had after the transplant. We will try to transition her to oral pain meds when she we think she's able to get the relief she needs with them. Obviously we'd like to be home for Easter but we'll just have to see how today goes.

Back inpatient

2009-04-07T18:48:00.001-07:00

Katie had to be admitted to UMMS this afternoon. The preliminary report on the culture from Monday 4/6 showed growth of VRE again and with the surgery looming they wanted to get her a few doses of abx before the surgery on Thursday. It stinks but it's what we need to do. We ran into a bunch of our favorite nurses already and of course our child life friends so we'll make the best of it.

Katie remains on contact precautions so she's unable to leave her room unless it is to walk for exercise so that makes things more difficult.

I'll try to keep you posted.

Surgery date

2009-04-02T17:22:00.000-07:00

We have a surgery date, April 9th... that's just one short week from now and significantly sooner than I had thought. However, this timing will be good in several ways. The kids are on spring break next week so caring for James will be easier and Katie will miss slightly less school.

Dr. V has decided not to save the ureter for possible later use so while it worries me a little bit it will make for an easier surgery, a likely shorter hospital stay and recovery. The inpatient stay will be just until we can be assured her postoperative pain can be controlled with oral meds. Dr. V thinks maybe just overnight.

Prayers will be very appreciated :o)

News!!

2009-03-31T14:25:00.001-07:00

The biopsy came back showing no signs of rejection!! Obviously we're very happy. They adjusted her Prograf level and will likely switch her to Rapamune after the upcoming surgery. We're supposed to be contacted by Dr. V's office with the surgery plan, I'll let you know when we know.

Testing Day Update

2009-03-31T08:30:00.000-07:00

We got through the testing yesterday. Both of the tests caused Katie quite a bit of anxiety. We were able to stay with her for the VCUG and they allowed her to insert the catheter herself which helped but there was still some crying. We had one of our very favorite Child Life specialists with us which was great. She was able to stay with Katie throughout the biopsy procedure. Again there was crying with that as well. Katie admittedly is trying to adjust to the fact that Dr. M does understand that Katie needs to be told everything that's happening and will happen, and she is telling her what she needs. Last night Katie said that she needs to remember that Dr. M really will tell her and won't do anything without telling her. Hopefully, she'll remember that for any future procedures.

The chief of peds radiology was in the room for the VCUG and yet he wasn't sure if there was reflux into the new kidney or not. He wants to study a few of the pictures to be sure he's seeing reflux where he thought he might have been. She is definitely refluxing up into the old kidney which leads into the theory of the bacteria getting up there and then hanging out.

Dr. M said the biopsy results might have been back as early as yesterday afternoon but that we probably wouldn't hear from her until this afternoon because she might want to consult with others and think over how she wants to proceed.

The big catch up

2009-03-26T17:51:00.000-07:00

I'm behind in here so I'm going to try to get you caught up without being confusing.

On Friday, 3/20 we saw Dr. V. He wants to remove the native kidney. He seems to think that it could be acting as a "stagnant pond" for the bacteria and with very little blood and urine flowing through it the abx aren't reaching to it. He is however, not completely convinced this is the solution to the ongoing/recurring infection problem. But since it does make sense we agreed to go forward. He wants to do a VCUG first to see if she is refluxing from the bladder into the new kidney. Since we already had the biopsy planned he wanted to try to schedule the VCUG for the same day before the biopsy. Obviously we don't want to suck out a piece of the kidney and then potentially fill it up with urine so one has to go before the other. At the time, he wasn't sure he could get it scheduled but today (3/26) we found it it did get scheduled for 8:30am on the 30th.

So, once the biopsy results are back, and provided they don't show anything we're not expecting, the surgery will be scheduled. The biopsy results should only take 48 hours to come back. I talked to Dr. M's nurse today and it really sounds like they expect the results to be the medication toxicity; however, they won't be able to make the switch to the replacement med until after the surgery because one of its side effects is poor wound healing... That didn't seem to be a big deal, the nurse said that Dr. M would likely just reduce her Prograf dosage. Her creatinine from the 3/24 labs was still at 0.9, so I asked if renal transplants can rebound after a prolonged increase in creatinine like this and she said "yes, absolutely!" So, that made me feel better.

We talked to Dr. V about how long the hospital stay would be and how long the recovery would be. He's giving some thought to saving the ureter from that old kidney to use later to make into bladder tissue. If he does that then it will be a longer stay with potential external drains. If he doesn't do that then it should be just an overnight stay with pain management as really the only issue. We'll know more when he makes that final decision. We understand the pros and cons and have decided to let him make that decision.

Katie has been pretty upset. We've also had some other family sadness lately as my mother in law passed away late last week, Steve and I left for New York last Saturday, I came home alone on Monday and the kids and I went back up on Tuesday (3/24) for the viewings and funeral. Today Katie had to stay home from school for another day because of a migraine. Seems like the combination of 2 late nights and the stress didn't sit well with her system. She had a PICC line dressing change today which seemed to really upset her too. I'm thinking of talking to the docs about pulling the PICC out when we finish these abx. Even if we have to have a new one put back in after the biopsy then so be it, but her skin is really broken down and I'm really worried about the scar tissue that's being created around the catheter. It's definitely something to think about.

We also gave a urine culture sample on Tuesday to be sure the abx was working before doing the biopsy and that came back clean, so we are definitely a go for the biopsy on Monday.

If you're confused or have any questions, please feel free to ask.

The Plan

2009-03-16T17:52:00.000-07:00

The culture from Friday came back with greater than 100,000 colony forming units of VRE (same bacteria as before.) We will be treating it for 14 days starting tomorrow. It's given every 12 hours which means that Steve and/or I have to get up really early so that we can start it at 6am so that it can be done running by the time she needs to leave for school.

The appointment with Dr. V has been moved up to this Friday at 9am... did I already say that, I apologize if that is a repeat.

On 3/24 we'll get labs and another culture at UMMC. If that culture shows that the abx is working then on 3/30 she will have her biopsy.

We also have Flashes of Hope on the 25th so we'll be back and forth to the hospital quite a bit over the next 2 weeks.

I'm also taking her to the eye doctor tomorrow afternoon because she has had a headache for over a week now. Although, this afternoon someone suggested to me that it could be a prednisone side effect and that prednisone can cause vision changes so, who knows. The optometrist suggested bifocals for her last August but I just thought she was too young, so step one will be to get those for her.

2009-03-13T16:30:00.000-07:00

Let me see if I can explain all of this in a clear manner.

I spoke to Dr. M. She is encouraged by the clean culture from LabCorp but she's not convinced and wanted a culture process by another facility. So I drove a sample down to the UMMC lab this afternoon. When that comes back if the volume of bacteria is 50,000 or greater she will treat the infection with the appropriate IV abx for 7-14 days.

Katie's creatinine is up to 0.94 which is a bit concerning and could mean a couple of things. She doesn't think that it's completely because of dehydration. It could be, like a mentioned yesterday, a toxicity to Prograf. Dr. M also said it could be some small level of rejection. The only way to identify 1 of those as the real reason is to do a biopsy. So, if the culture is positive then after we treat it we will be doing a kidney biopsy. If it's negative then we'll be doing the biopsy sooner.

We're also seeing Dr. V sooner than we had thought. Dr. M said that he has a clear plan for how to proceed with treating these recurrent infections. We were going to see him on the 27th but they called today to move it up to the 20th.

Katie is pretty panicked about the biopsy because it's the unknown. I got some information about it today and she's going to call her camp kydnie pal to see if she has had one, and I'm going to contact another one as well. I told Dr. M that we would need to have someone from ChildLife there with her for the procedure. The sedation and prep are the same as the PICC line placement so that should be comforting for Katie but it's not.

We did get some really good news today. We got the letter and phone call from Make A Wish. Katie's wish to meet Corbin Bleu has been approved! The wish volunteer told me that she is 5th on the list of wish kids waiting to meet him. She's hopeful that Katie might get her wish in the next several months but obviously can't promise anything. This is definitely our bright spot right now.

Culture results and more

2009-03-12T18:39:00.000-07:00

Well... We basically have more questions than answers at this point but since I said the culture results would be back today I wanted to post.

I spoke to Dr. M's nurse late this afternoon. The culture came back clean but Dr. M doesn't believe the result. The sample was dropped at LabCorp and we know that LabCorp has a threshhold below which they call a culture clean. In other words if a sample has only 50,000 colony forming units they may report the culture as clean, however we don't know if that number is 50,000, 60,000 or some other number. So Dr. M is thinking about what she wants to do and is supposed to call us to discuss that and the blood results.

Her blood results are a little funky. Her Prograf level is higher than they would like it to be and her creatinine is slightly higher than it was. It's possible that those two things are related and that she's actually developing a toxicity to Prograf. One of the possibilities to deal with that is possibly a change in that part of the drug regimen. There aren't any coordinating results that would lead them to believe she's in any level of rejection so that's a good thing but Dr. M wants to mull things over for a bit before calling us to discuss.

We're contemplating seeking out a second opinion on these infections, so if anyone who has found us here has any renal transplant experiences that they would like to share please feel free to email me at steamy4 at verizon.net

Broken Record

2009-03-10T05:53:00.000-07:00

I so feel like a broken record but I know lots of people will be wondering if I don't post so I'm posting.

We went for blood labs and urine this morning. The blood results will be back later today and tomorrow (the prograf level won't be back until tomorrow) and the final on the urine culture will be back on Thursday. The sample didn't look like a sample that will come back with no growth. We have no idea what the plan is if it comes back with a higher bacteria concentration, I would assume they will treat it to protect the kidney but I'm not sure.

We made the appointment to see Dr. V for the end of the month. I have no idea what seeing him will accomplish but the appointment is made.

I'll update when I know something more.

Not so much

2009-03-05T18:22:00.000-08:00

Tuesday's culture came back with less than 70,000 colony forming units of VRE. In English, she has an infection with the same bacteria as the last one. The volume of bacteria is kind of low so Dr. M doesn't want to treat the infection. She wants us to go back to every day irrigations with the acedic acid (we had gotten permission from Dr. V's office to do it just every other day after the first clean culture.) She wants to repeat the culture next week and she wants us to see Dr. V in a few weeks. Obviously Katie is really unhappy because the irrigations are painful for her. I have an email out to her psychologist who taught her some pressure point relaxation techniques, maybe she can give her some pointers to help her through, she's also a fan of aroma therapy and knows what scents to use for certain things.

So, that's where we are...

One down, One to go

2009-02-26T14:04:00.000-08:00

Tuesday's urine culture came back showing "no growth." We were going to drop off another urine for culture on Tuesday but Katie has her last Cytogam infusion on Thursday so we may wait until then and have the 2nd culture done at UMMS. Once we get a 2nd clean culture we'll arrange to have the PICC pulled. YAY!!

Next round of labs

2009-02-22T17:05:00.000-08:00

Just wanted to let everyone know that we will be going on Tuesday for labs and a urine culture. The final on that culture should be available on Thursday but we're doing it at LabCorp so it might take a bit longer.

update from Katie

2009-02-19T10:52:00.000-08:00

Hi I just wanted to say that I am OK with the acidic acid flush but it deos really hurt and now I only cry a little at the end but I don't scream anymore also we finally made it up to 100 but still I would rather have another cystoscapy instead of these bladder flushes.well thats all from me for now.

Doing better

2009-02-17T16:28:00.000-08:00

The bladder irrigations are going better. She's not screaming when we put it in anymore and she's able to keep it in until the next cath time. It's still horrible especially when it's added into the other things she has to deal with, but it's better than it was. I sure hope it works...

Irrigations

2009-02-14T16:47:00.001-08:00

We just did our first irrigation with the acedic acid and I feel like the worst parent in the world. She rates the pain at a 5 or 6 on a scale of 1 to 10 (10 being the worst pain you've ever felt in your life.) She screamed through the entire process. She went into it with an open mind so I do believe her about the pain. We had to skip her bowel flush this evening because I just couldn't do another thing to her this evening. They want us to do 50 mL and leave it in her bladder until her next cath (4 hours later.) Tonight we just did it for 2 minutes with her screaming the whole time. Their goal was for us to go from 50 to 75 and finally to 100 mL.

Steve is on the phone with his sister right now so we haven't really talked but I don't see how we can keep this up. Katie would prefer to have another cystoscopy to mechanically clean out the bladder but I'm not sure that's an option. I'm just not sure what to do.

We did find out that we're only going to do a 7 day course of the abx, not sure why 7 instead of 14.

Plan

2009-02-11T15:29:00.000-08:00

Warning nothing in this plan is very new...

Dr. M and Dr. V spoke. The plan is to get her started on 14 days of an antibiotic, the same one we used for the VRE before. After 2 days of the abx they want us to do bladder irrigations with acedic acid. Just imagine folks, sticking a catheter up your you know where and pushing an acid up into your bladder.. yep she's not too thrilled. We've done this before and it was rather painful. We don't have the specifics on the volumes or frequency yet. The idea here is to keep that mucous broken up so it can flow out of the bladder easily.

I'll be honest, this sounds as pointless as just treating with abx. After the last round we mechanically cleaned out the bladder and still got reinfected so why will this be any different.

I spoke to Dr. V a bit this afternoon. He said that enterococcus (the E in VRE) is a perfectly fine bacteria to have in your bowel, just not in your bladder. Katie probably transferred eterococcus to her bladder before the transplant and was able to kill it off with her natural immune system, but now that she's immunosuppressed she can't do that.

Her Prograf dose came down today so maybe that will help her fight these infections.

Please keep us in prayer. Katie is very upset about the acedic acid irrigations, and she had some side effects from the tigecycline before that will likely cause her to miss school and more importantly dance.

End of Good News

2009-02-10T06:01:00.000-08:00

The final report on the urine culture from 2/5 grew vancomycin resistant enterococcus. Dr. M wants to treat it as an outpatient but wants Dr. V's input before beginning to treat. More info when I have it.

Preliminary culture results

2009-02-06T19:21:00.000-08:00

When the phone rings after 6pm on a Friday and the number comes up as a UMMC number... I get nervous, when I answer the phone and it's Dr. M's soft phone voice I get even more nervous, tonight that was unnecessary. She called to tell us that the preliminary results from the 2/5 culture came back showing no growth and she considers that a clean culture. Her blood labs from yesterday were great also, her creatinine is 0.78 and her prograf level is 10. The prograf is doing exactly what she wants to see it do, it's trending up around the time that she would normally want to make an adjustment down in the amount she's getting. She also mentioned to Steve that we're getting close to a point where she would want to adjust her cell cept down also.

We all agree that we still want to have one more clean urine culture from the UMMC lab before we pull the PICC line, that sample will be dropped off down there on Wednesday 2/11 with results on either 2/12 or 13.

She is still bothered by the fact that there is still mucous in her bladder. She has message into Dr. V for him to help us come up with a plan to make sure we're getting that mucous out of there on a regular basis. Steve and I aren't sure what that's going to entail, either going up in size on the catheters or doing some kind of bladder irrigations.

Katie had her second to last Cytogam infusion yesterday (2/5) she just has one more on 3/5 then we're done with that.

Maybe... just maybe, this blog will get quiet for a while.

Bad Lab People

2009-02-05T16:27:00.000-08:00

The urine sample from Monday did not have a culture run on it so we're not any closer to knowing of we're clear of these infections. In addition, the computer system for labs at UMMC is completely down so her lab results weren't available either. We left another urine sample today so hopefully that one will come back clear but we won't know anything until Monday.

More info

2009-02-02T13:24:00.000-08:00

Dr. M's nurse called back with some updated information. Katie's prograf level is right where it should be. (Telling us that her creatinine and prograf are easily effected by her not drinking enough.) And... the UA from this morning looked the same as the one from last Wednesday, few bacteria and greater than 50 white blood cells. While that's still not "perfect" it's still a result that means the culture could come back "no growth." I'm choosing to be optimistic.

Mixed news

2009-02-02T08:39:00.000-08:00

Today's labs looked much better than last weeks. Her creatinine is back down to 0.7 and the final report on the culture from last week was "no growth." However, today's urine sample was quite cloudy and given the initial urinalysis results from last week (bacteria and white blood cells in it) we do expect that the one from today will come back showing an infection. More info when I have it.

Same Story

2009-01-29T14:44:00.000-08:00

We had labs yesterday. We sent a urine because it's on the lab form but Dr. M's nurse had said that it would be a pointless culture because she would still be covered by antibiotics. The nephrology secretary called today and said that Dr. M had seen our labs and that we needed to come in on Monday for labs at the hospital and then to see Dr. M. Obviously we were concerned about what was happening, and she didn't have any info. Dr. M finally called us back this evening and said that Katie's urine has bacteria and white blood cells (two indications of infection) and her creatinine has gone up to 1.3 (which I think is due to dehydration) and her prograf level was 11.8 which is high as well. So she wants to see her, but I'm not sure exactly why. The worse news is that she either still has the previous infection or has a new infection and that's just awful news. It means that manually cleaning out the bladder didn't do a darn thing. And it means that they will likely start talking about taking out the native kidney sooner rather than later. Forgive me if this is a repeat of information but Dr. V, her surgeon, said this would be a substantial surgery and that he's trying to figure out in his head how to do it and still save any savable parts that he might need to use later to replace her bladder tissue.

Flashes of hope was canceled this week due to weather. We'll get rescheduled the next time they come to UMMC which will be in March.

Finishing Antibiotics Again

2009-01-26T05:15:00.000-08:00

Yesterday was the last day for the Vancomycin (which I've been spelling wrong) and today is the last day for the Ceftriaxone. We have blood and urine labs on Wednesday so we'll have preliminary urine results on Thursday. In the last lap around this circuit the first urine culture was negative, and the subsequent ones were not (and they got increasingly worse.) So I'll be happy with a negative culture on Thursday but happier the following week. We have blood and urine labs that following Thursday (2/5) so that preliminary result will be back on Friday (2/6.)

We have some fun stuff coming up though. We're hoping Katie can go back to school on Tuesday (as in tomorrow), we have the letter from her doctor, just waiting for the school to give us the final ok. She'll start with 1/2 days to build up her stamina. On Wednesday after the labs we are participating in a program called "Flashes of Hope". Then on 2/7 we're participating in our first Starlight Foundation great escapes event. Katie and I will be taking a class at the Young Chefs Academy of Rockville. We're also still waiting on the Make A Wish volunteers to call to come out to talk to Katie, according to the letter from them that phone call should come in any day. So we have some fun stuff coming up.

Apologies for not updating

2009-01-18T10:56:00.000-08:00

I'm so sorry that I haven't updated the blog.

We came home on Saturday late morning. After saying no to going home on Thursday Dr. M changed her mind on Friday, and then things didn't get set up until Saturday.

She had the cystoscopy on Friday. Dr. V said that everything went well and he did clean out all of the mucous. However, he didn't find any clumps like he was kind of hoping to. That would have made it easier to confirm our theory about the clumps holding various kinds of bacteria and the abx not getting completely through the clumps. Maybe getting the bladder all cleared out will help matters but we're just not sure. She's on two abx until the 26th of this month. One of them is given every 8 hours which is a bit of a pain but well worth it rather than having to remain inpatient.

Next up is labs on Tuesday. I have to call Dr. M's office tomorrow to find out where/how they want them done and I need an order for them. Our discharge papers say to have them done at Labcorp but there was no lab slip and she told Steve she was going to want a trough level of one of the abx she's on. We could have them done by peds at home which would be our preference but we'll call tomorrow and see what she wants us to do.

Staying

2009-01-15T10:06:00.001-08:00

We're likely not going to get to come home until at least early next week. We don't know how long she will be on the abx and we can't seem to get an answer on what they will be using to make that decision.

If anyone wants to come visit over the weekend I would welcome the distraction, just please call first, if you don't have my cell phone number leave me a comment here and I'll email you with it. I'm going to take the laptop with me so that maybe I can get onto the hospital's wifi system now and then.

Dr. V to the rescue..

2009-01-14T04:08:00.001-08:00

... well that may be much more dramatic than it will actually be but we'll see. Dr. V stopped by yesterday and said what I was hoping he would say (even though I hadn't mentioned it here or to Katie.) That he wants to take Katie into the OR and use a cystocopy procedure to clean out her bladder from the inside. Since Katie's bladder is man-made and made of bowel tissue it produces mucuos. Since the transplant there has been more mucuos than normal, likely due to the fact that in order to implant the ureter from the new kidney they had to cut into the bladder, so it's not unexpected. But we're all thinking that all of this bacteria is hiding out in that mucuos and that the abx are clearing out what they can reach but that they aren't penetrating the thicker sections of mucuos. Then when the abx stops the bacteria grows up again. Dr. M wants to wait until we've gotten some good coverage with this round of abx so that there's less bacteria in the bladder that could get splashed around while he's in there so their current plan is to do the procedure on Friday afternoon. He said he thought we could likely go home after the cysto. I told him that Dr. M seemed to think we would have to stay for the full course of vincomycin because it's unstable. He said it could be monitored and if it seems as if it's going to stay stable it can be done at home. So when Dr. M came back I discussed that with her and she agreed. I think she was really relieved that he wants to clean out the bladder, as she seemed to lighten up quite a bit. She's a busy lady this week, there are 5 peds renal patiets that are inpatient right now, that's a lot, usually we're the only ones.

On a separate yet related note, the nurse came in last night and said she was going to be bringing in Katie's dose of Ceftriaxone but I said... "ummm, not without a resident explaining to me why we've added a new abx." I also told her to tell him/her that "because it was ordered" wasn't going to cut it as an explanation. So he came in and said that the culture from Monday morning grew ecoli. Now I know you all aren't as swallowed up in this stuff as I am so I'll recap for you. The first rehospitalization was for ecoli, the second one was for vincomycin resistant enterococcus, and this one was for coagulace negative staph as reported by a culture from last Tuesday. So I asked him if this culture from yesterday grew the staph too or just ecoli and he said just ecoli. I then reminded him (not that he knew but I like to pretend they do LOL) that that sample was given BEFORE we began treating the staph. If you think none of that makes sense, you're not alone. I told him that when the team comes through this morning I'm going to want some answers on why we're treating a bacteria that no longer shows up on culture, etc.

It's been impossible to get into this room to post. This morning I've snuck over in the morning before everyone gets up. It should be easier to update you over the next two days as I'll be at home in the evenings/overnights.

Wish I had better news

2009-01-13T06:56:00.000-08:00

We are admitted and we are likely here for at least a week, possibly 10 to 14 days. The medicine that Katie is on does not always stay stable in the blood so it has to be repeatedly checked and adjusted as needed.

She is still on contact precautions so she can only leave her room to go for walks for exercise. She can't go to the teen room or to any child life events.

Dr. M really wants Dr. V involved and it sounds like he wants Dr. V (as Katie's urologist) to figure out a course of action to clear these repeated infections. So far no one has heard back from Dr. V so that's not good. We know he knows she is here as Dr. M told us that and we saw his nurse practitioner here yesterday.

We're going to try to have Katie's home teacher come here to work with her so she can try to keep up and it can also serve as something else to occupy her.

We've started right back in with resident problems. They didn't get ANY of her meds to her last night from the hospital we gave them to her from our home supply. No dinner last night. It took me prodding to get her meds this morning. They wrote her for a renal low phosphorous diet which is wrong and we have to have this argument every time we're here. This time I told the senior resident that, she said "but we got it fixed" and I said "but 3 weeks from now when we're back we'll be having the same argument and it's just not acceptable anymore." Dr. M was standing right there and agreed that there was no reason for them to put her on anything but a regular diet. I'm still trying to get menus for her so she can choose her meals, I started trying to get them last night.

I need to get back to her.

Pain again

2009-01-11T17:08:00.000-08:00

Katie started having pain in the area of the new kidney last evening. We hoped that it might have been bowel related and it did get better overnight, but it has persisted throughout the day today. So we're going to call Dr. M in the morning and we're quite confident that she will want Katie admitted to the hospital again. I suspect that this won't be a long stay because of her having the PICC line. I think they will want to run fluids, check labs, see if the fluids resolve the pain, get the results of the culture, get abx started, and that as soon as we can line up home health to bring us the meds we'll be able to come home. Now... all that being said... we don't know what kind of bacteria we're dealing with yet. The first of this round of cultures grew a new bacteria which name escapes me at the moment but there's no guarantee what this second one will grow. If it grows a resistant bacteria it could be an obscure abx, or something we can't do at home, or something that requires too much monitoring to be done at home. There just aren't any guarantees. I'll try to keep you updated as much as possible.

Saturday call from Dr. M

2009-01-10T11:41:00.000-08:00

It's not quite as bad as I was expecting when nephrology's number came up on the caller id but... Katie's kidney function still all looks good, but her prograf has dropped so we've made an adjustment to her dosage beginning tonight. And the urinalysis came back showing bacteria and white blood cells in the urine so there's still an infection of some kind. She doesn't want to treat her until the culture comes back because she's had a myriad of bacterias and giving her abx now would likely not cover this specific bacteria and would cause side effects we can do without. She's also consulting Dr. V (our surgeon) to see if he has any other advice for getting rid of these infections. She still has the PICC line which is a really good thing at this point because we're hopeful that we can avoid a hospitalization. However, we had been hoping Katie could go back to school on Tuesday and that's not likely to happen now.

Not much new but...

2009-01-08T15:36:00.001-08:00

The organism that’s growing is only sensitive to IV antibiotics, but the colony amount is so small they don’t want to treat unless she’s symptomatic, so she’s to drink lots and cath lots and hopefully the culture that we take tomorrow will not grow any bacteria. Going back to school is on hold until at least Monday when we get tomorrow’s culture result.

Update

2009-01-07T12:57:00.001-08:00

An update is long overdue and I'm sorry. I was waiting to have all good news and it's obvious that's not going to happen.

We dropped a urine culture at our local lab on Saturday. We had to go to the hospital on Tuesday for the next Cytogam infusion and we were all anxious about the results of that urine culture. We also discussed her going back to school on Monday and Dr. M agreed with P.E. restrictions. The urine culture came back "no growth" otherwise known as negative. Dr. M wanted to immediately have the PICC pulled in interventional radiology. Katie was freaked about that so we got permission to have home health pull it. Dr. M and I said that was good because that would give us a chance to wait for the urine culture we had given there that same day (yesterday.)

Around noon when I hadn't heard from Nancy I called and left her a voice mail message. She called back around 2 and said that the lab hadn't run a urinalysis only a culture and the preliminary report wasn't back yet but would be back around 3.

Just got off the phone with her... the preliminary report shows 50,000 growth of a different bacteria (a new bacteria thankfully.) So we're keeping the PICC for now. And Dr. M wants Katie to cath 6 times per day. The plan is that Dr. M wants to see the final report tomorrow. If it comes back saying there's no recommendation for treatment then we pull the PICC and she goes to school on Monday. If it needs treated then we will need to keep up the increased cathing, and do antibiotics (hopefully either oral or at home with the PICC) and no going back to school.

The other piece of new information is about another possible surgery. When we were last inpatient Dr. M mentioned the possibility of removing the native kidney because it's a potential area for bacterial growth. Yesterday she said the Dr. V (our surgeon) usually likes to talk about doing that between 3 and 6 months postop from a transplant... sooner if infection has been an issue. So it seems as though we'll be dealing with that soon also.

Labs

2008-12-29T19:10:00.000-08:00

We had labs drawn today at the hospital and they came back great. Creatinine is 0.7, prograf is 8.2 (target is 8-10.) Her blood pressure was good when the nurse was here to change the dressing on the PICC line today. The dressing change was a little traumatic but she made it through.

According to the nurse, Dr. M wants the PICC left in place until we get a clean urine culture after the end of the abx, which is a really good idea. So tomorrow we need to call peds at home (the nursing service) and have them give us care instructions for after we're finished with the abx.

I'm also waiting to hear from Dr. M if she wants Katie to go back to school on the 12th when her current "certification for home and hospital" expires, or if she wants to keep her out longer. I'm on the fence. I'd like to have a clean culture before we make that decision but that may be cutting it too close since those culture results won't be back until the 9th.

Merry Christmas!

2008-12-25T16:57:00.000-08:00

Just wanted to wish everyone a very Merry Christmas even though it's late in the day. We've had a nice day. Katie is a little bothered by a few things but all in all she's doing very well and is of course happy to be celebrating Christmas at HOME.

Another update

2008-12-24T15:29:00.000-08:00

I'm sorry to go so long between updates, we couldn't get the internet to work in her room anymore and the computers in the Ronald McDonalds house room were busy most of the time.

Sunday 12/21/08
Last night (Saturday night 12/20), sometime before 3 Katie's IV pump beeped with a message of "infusion complete." This usually means that the nurse didn't keep track of her pumps and how much time they had left so that she could get in and reset it without waking her patient. So when it beeped again around 3 I was annoyed, I didn't even look at what it said I just pushed the nurse call button (which we almost never do.) Well it said "patient side occluded." Sometimes that just means she needs to kind of shake out her hand or straighten it and then the pump needs reset. This time... not so much... the part that goes inside of her vein had backed out and was in the shape of a Z, so it was ruined. So I got up to start negotiating on Katie's behalf to not restick her right then in the middle of the night. I figured since her next abx dose was due at 5am and her Prograf level blood draw was due at 6:45 that we make the abx a little late and just do one stuck and wait until 6:45 to do it, particularly since her fluids were due to be discontinued today anyway. I had to argue a bit ut we got there.

Two residents showed up at 7:15 (grrr) and missed the first stick all together. So I agreed to let them just do a regular blood draw so that her Prograf level wouldn't be any later than it already was and we would regroup. The resident doing the sticking was clearly "done" because after the blood draw stick (which was thisclose to going badly) she said "well I'm off duty now so another resident will be back to try again later." Oh, nice, sorry to have bothered you. One of the nurses on the floor had been following along with us and had help me convince them about delaying the orginal restick, and she asked to try to put another IV in, and I let her... that one "blew." When you place in IV you check it by using a syringe of normal saline to "flush" the line, if it flushes and flushes easily then you have a good IV. If it's hard to flush it's a bad IV, or you see a bump form under the skin as you flush it's "blown" and the fluid is now collecting under the skin instead of going through the vein. At this point we had a freshly lost IV site in the left hand, a failed IV placement attempt in the right arm inside the elbow, a fresh blood draw site in the left arm inside the elbow and a freshly blown IV site in the left hand (yes that's two in the left hand because we're trying to keep her able to do crafts.) So we asked for a PICU nurse as usually they’re more skilled and experienced at placing IVs in kids and babies. Later, at close to 9, a very nice, experienced, skilled PICU nurse came over. Getting another IV placed was really hard on Katie because that left hand is so sore, and she cried and cried, but we got it in and if flushed beautifully. We had a small snafu with it not being tightened together strongly enough but we held it together, cut away some of the tape and retaped it.

And that’s where we are. Her antibiotics schedule is now 9am and 9pm which is actually a good time schedule to go home with and it makes it more likely that we can get sprung tomorrow afternoon since the next dose won’t be due until 9pm.

Childlife is supposed to come by any time now to talk to Katie about the PICC placement process. I hope I won’t have any more updates for you until tomorrow afternoon.

Wednesday 12/24:
Let me bring up to date from where I left off above...

Lisa from Childlife did come by to talk to Katie about the PICC placement. Sunday night was uneventful thankfully. Katie's left hand was very sore from all of the sticks, her original IV was there, then the blown IV attempt was there, and the replacement IV was there also.

Monday came around and we were told we would go down for the PICC at 10:30, and our nurse already knew that we needed childlife and had notified them of the time. At 10:15 Marisa from childlife came to our room. At 10:20 the sedation nurses came in to put EMLA (numbing cream) on Katie's arm to help with her not feeling the lidocaine sticks. At 10:25 the doctor team arrived. I told them we were due to leave shortly but they came in anyway. I had a rather fun moment with them though. They had a new (new to us not a new doctor) pediatric attending with them. The resident assigned to Katie was doing her report and when she read Katie's input and output from the day before it was "off" saying that she had peed more than 2 liters more than she had drunk (drank?) So the attending stopped her and was asking questions, among them was "what was her underlying original kidney disease." The resident said something like "unilateral kidney agenesis" which firstly doesn't answer the questions and secondly is odd phrasing. The attending looked at her and looked at me (I was behind the resident) and said "even Mom is behind you giggling." I was hysterical inside! I helped them along with some info but then I kind of cut them off saying that I was concerned we would lose our spot downstairs for the PICC placement.

When we got downstairs and Marisa walked off with Katie... that was tough! She left us at almost exactly 11am. Since the sedation nurses had told us that the entire procedure from prep to clean up takes 1 hour so when the clock struck 12 noon I started to panic. I asked Steve how long I had to wait before I could officially worry and he said 15 minutes. During that 15 minutes I was of course imagining the worst. (I don't think I mentioned on here about the "code" that took place in the ER when we were there. A code is short for code blue when someone's heart has stopped beating and an entire team of people responds to try to revive the person. The event in the ER had the worst possible outcome.) I was pacing the hallways down near IR asking Steve if they always announced throughout the hospital when there is a code as they had done in the ER that day (and I'd heard another one announced since then too.) At 12:15 I went to the desk in the waiting area to ask for a status. The girl called someone and quickly hung up the phone saying that Katie was still in the procedure, but that wasn't good enough for me I wanted to know what the delay was, she gave me possible reasons but those were just possibilities that could happen I wanted to know what the delay was with MY child. She sent us down to the IR office but the doors to go in there were locked so we paced for a few more minutes and someone saw us and asked if they could help. She knew that they were just getting ready to bring her out of the procedure room so we waited. She was crying when she came out but she stopped quickly when she saw us. We hung out in the little recovery room for a bit then went back to her room. She was in pretty good spirits and happy that nothing had hurt during or after the procedure. Later it got pretty sore and still itches her quite a bit at times.

Not long after we got back from there we were told that we weren't going home that day. Dr. M had decided since we were due for her next cytogam infusion on tuesday that we should just stay and have that done as an inpatient and then head home. I was concerned about the floor having the right tools to do the cytogam, and I was concerned that the nurses would have time to do what needed to be done. The cytogam has to be filtered and run in particular tubing, and it gets run at 3 different rates changing every half hour, and vitals have to be taken every half hour. The attending told us how all of those things would be handled, and oh how I wished she was right... but she wasn't. It eventually all got worked out but of course there was stress involved for me. We had also asked the attending to please be sure our discharge papers were ready by the time we were done, and they were but not without some additional prodding from us and and our nurse.

In the end we left the hospital around 12:30. When we got in the car we called up to the middle school and told them we needed to pick James up early. We swung by there on our way home and all four of us got home around 1:30 or so.

The nurse came by that evening to teach us how to administer the meds at home. It was pretty invasive with lots of questions but we got through it.

This afternoon we went to our home church for 2 Christmas Eve services, the first family service with candlelight and communion, and then the children's service that Steve usually plays guitar for. Now we're home enjoying some quiet family time.

Thanks again for everyone's thoughts and prayers.

Update 12/22/08

2008-12-22T17:48:00.001-08:00

I wish I could tell you that today was smooth and Katie is home but, those would both be untrue.

ChildLife did come by yesterday (Sunday) to talk to Katie about the PICC placement process, and by the time she left we had lots of ways to reach someone to go down with us today. Even so when our daytime nurse stopped by this morning I mentioned it to her and she already knew and it was all lined up. She came by a bit later and said we would be going down at 10:30 and that Marisa from ChildLife had already been told. At 10:30 the sedation nurses from IR came up and put EMLA (numbing cream) on Katie's arm and said she didn't need to come down until 10:45 which worked out well as the team was just about to "round."

The whole team came in with a new peds attending that we hadn't met before. A resident gave report on Katie and when she got to intake and output and the numbers were off so the attending started asking the resident questions. Here's where it got fun for me. The attending asked what Katie's underlying kidney disease had been originally. The resident said "unilateral kidney agenesis" and I must have made a face that reflected my thought which was "that doesn't answer the question." The attending agreed, told the resident that, and then said "even Mom is giggling behind you." I wish I could have laughed out loud the way I wanted to. The resident got drilled a little more and then the attending asked me to answer her questions. A bit further in the conversation they were talking about increasing Katie's fluids and I mentioned that that concerns me because of her bladder being man-made. Later in the afternoon the attending came by again and mentioned how astute I was to bring that up because that was indeed one of Dr. M's concerns about increasing Katie's fluids also.

And thus ended the bright spots of the day.

We went downstairs to IR, Katie's face was full of fear when she had to leave us but we did our best to put on brave faces. We had been told the procedure would take an hour including sedation and prep and dressings and such. She went in at 11 so at 12 I started to panic. Steve made me wait until 12:15 before we said anything. We asked at the desk and the girl dialed the phone asked about Katie and hung up and said "she's still in the procedure." I said "but you didn't ask if there was a problem or complication or another reason they were going long." She spouted possible reasons they could have taken longer than expected. I said "well those are theories and not the actual reason that *my* child's procedure isn't over yet." She tried to direct us down to the IR area (that was a general radiology area I think) but we couldn't follow her directions, luckily someone saw us and asked if we needed help. She knew that they were just finishing up with Katie so we were right there when they wheeled her out of the procedure room. She was crying but quickly stopped when we got to her and into the recovery area.

We didn't stay there long and went back upstairs to her room. Dr. M just about followed us in. She told us how she wanted Katie to have another ultrasound while we were still there and that plans were underway for home health so that we could go home. Shortly after she left our nurse had gotten a call from ultrasound that they wanted us to come down. Molly from ChildLife was our transporter which was nice. Unfortunately the meds Katie had gotten during the the PICC placement started to wear off and her arm started to get sore and she resumed her complaints about her peripheral IV (it was still in place and that hand was pretty swollen and bruised.) It was probably inevitable, it was manipulated quite a bit, and she had lidocaine injections and two stitches. She got mighty cranky and really frustrated. Of course we had to wait and wait and wait down in ultrasound. The actual treatment room down there was cold so she was upset about that, and she was just crying about wanting to go home.

We no sooner arrived back in her room than a resident came in to tell us we weren't going to get to go home until tomorrow (Tuesday afternoon.) It seems (although I came to this realization after much frustration of asking lots of people and getting no answers) that Dr. M decided that since we were scheduled to have the Cytogam infusion tomorrow that it would be just as easy to keep us inpatient overnight and give her the Cytogam as an inpatient and send her home after it. In the middle of me trying to get answers about that, the home health coordinator came by saying that she had things lined up for a visit tomorrow morning, well or course tht wouldn't work but at this time it was 4:40 the place closes at 5 and she wasn't sure she coudl get it changed to tomorrow evening. She she went to make that call and thankfully was able to get everything rescheduled.

I wish I was conveying every frustration or irritation of the day but please know I'm leaving things out because it's just impossible to put it all in.

Katie wasn't happy that I left this evening but Steve was insistent. I wanted to keep James out of school tomorrow and take him to the hospital with me but he has a presentation in one of his classes.

Hopefully I can post tomorrow that we're home.

Update From Sunday 12/21/08

2008-12-22T17:46:00.000-08:00

I typed this on Sunday morning 12/21/08 and then couldn't get access to post it...

Last night (Saturday night 12/20), sometime before 3 Katie's IV pump beeped with a message of "infusion complete." This usually means that the nurse didn't keep track of her pumps and how much time they had left so that she could get in and reset it without waking her patient. So when it beeped again around 3 I was annoyed, I didn't even look at what it said I just pushed the nurse call button (which we almost never do.) Well it said "patient side occluded." Sometimes that just means she needs to kind of shake out her hand or straighten it and then the pump needs reset. This time... not so much... the part that goes inside of her vein had backed out and was in the shape of a Z, so it was ruined. So I got up to start negotiating on Katie's behalf to not restick her right then in the middle of the night. I figured since her next abx dose was due at 5am and her Prograf level blood draw was due at 6:45 that we make the abx a little late and just do one stuck and wait until 6:45 to do it, particularly since her fluids were due to be discontinued today anyway. I had to argue a bit ut we got there.

Two residents showed up at 7:15 (grrr) and missed the first stick all together. So I agreed to let them just do a regular blood draw so that her Prograf level wouldn't be any later than it already was and we would regroup. The resident doing the sticking was clearly "done" because after the blood draw stick (which was thisclose to going badly) she said "well I'm off duty now so another resident will be back to try again later." Oh, nice, sorry to have bothered you. One of the nurses on the floor had been following along with us and had help me convince them about delaying the orginal restick, and she asked to try to put another IV in, and I let her... that one "blew." When you place in IV you check it by using a syringe of normal saline to "flush" the line, if it flushes and flushes easily then you have a good IV. If it's hard to flush it's a bad IV, or you see a bump form under the skin as you flush it's "blown" and the fluid is now collecting under the skin instead of going through the vein. At this point we had a freshly lost IV site in the left hand, a failed IV placement attempt in the right arm inside the elbow, a fresh blood draw site in the left arm inside the elbow and a freshly blown IV site in the left hand (yes that's two in the left hand because we're trying to keep her able to do crafts.) So we asked for a PICU nurse as usually they’re more skilled and experienced at placing IVs in kids and babies. Later, at close to 9, a very nice, experienced, skilled PICU nurse came over. Getting another IV placed was really hard on Katie because that left hand is so sore, and she cried and cried, but we got it in and if flushed beautifully. We had a small snafu with it not being tightened together strongly enough but we held it together, cut away some of the tape and retaped it.

And that’s where we are. Her antibiotics schedule is now 9am and 9pm which is actually a good time schedule to go home with and it makes it more likely that we can get sprung tomorrow afternoon since the next dose won’t be due until 9pm.

Childlife is supposed to come by any time now to talk to Katie about the PICC placement process. I hope I won’t have any more updates for you until tomorrow afternoon.

Inpatient saga continued

2008-12-20T13:11:00.000-08:00

Thursday evening (12/18) a resident came up from interventional radiology (IR) to have us sign consent forms for the PICC line placement. Which they wanted to do on Friday (12/19.) We told him that one of us parents would need to be in the room and he said "that shouldn't be a problem." Well after I left for the evening a resident came in and said state law prohibitied parents in the treatment room in IR) during the PICC line placement. That was a lie, the state doesn't mandate things like that. Friday morning before I got here (and I got here at 8:20) the peds attending comes in (btw, we don't really like him, we tolerate him as a necessity) and tries to convince Steve that it's unneccessary for us to be in the room. Steve says something to the effect of nice try but we need to be in the room. Then another resident comes in to explain about how there's radiation in the room and it's a sterile field etc. Steve says, nice try but there's radiation when she has the other procedures too and we can be away from the sterile field and still be in the room. So I get here and they round (in case you don't know or recall rounding is where the whole team comes around and discusses your case, it's really just a teaching tool) and they say they're going to discuss our PICC issues with the PICU and see if one of their nurses will do it. (Previously it was always the PICU nurses who did PICC placements at the bedside.) They come back around like 10 or so and say that there's only one over there who does it and she's too busy, and they start talking alternatives which frankly suck because it means being here for the full course of abx and at that point we didn't know how long that would be. So I try to have a converstion (mind you I'm speaking to a person who has lied to us) she keeps using the phrase "peds anesthesia" as the folks who would administer the sedation (it's conscious sedation they don't put you to sleep which is part of the reason we're so adament about being in the room, that and the fact that Katie is TOTALLY FREAKED OUT about the whole process, like starts crying as soon as it gets mentioned.) so I decide that maybe I can talk to someone in peds anesthesia and get comfortable since I know most of them. So I tell the resident that and she agrees to have them come up (which they should have anyway imo and we were told by the first IR residnet that they would come up but they never did until we asked.) Then another idea dawns on me that maybe someone from child life could come in the room with her so I ask one of them as they're walking by and they say "sure we do it all the time." So we talk to Katie about that and this seems like a possibility for her. Then peds sedation comes NOT peds anesthesia, and they were very nice but they tell us things that we didn't know that are frightenting or bring back bad memories, that her arm will be extended onto a little table (she remembers this from the transplant surgery and it was scary), and that the line gets secured with a stitch (her central line after the transplant was secured with a stitch and removing it was a very scary procedure.) So then she's CRYING HYSTERICALLY by the time they leave. But I get her calmed and convinced that we can go forward and the resident comes back (its now 1:30pm btw) and says too late they can't do us now we missed the window because we didn't make a decision early enough. Mind you we were never told there was a window, in fact we had asked for any kind of a time frame and they couldnt' give us one. Basically it was Friday and everybody wanted to go home early (and I'm not kidding!!! we were told "well you know it is Friday afternoon") We PLEADED with them to ask IR to make an exception and we got now where. We got social work involved and nursing called a patient advocate.. nothing. I lost it, I started crying and could not stop. I kept trying to come back into Katie's room but I could not stop crying. Meaghan the social worker saw me and took me to another hallway to talk but I still couldn't stop crying.

Eventually I did and I left the hospital for several hours last night to go get Katie some craft stuff. It's really hard for her not to be able to go to the teen room (as you can tell by the number of times I mention it) so I brought the craft portion of the teen room to her. Luckily for our budget they have all the stocking stuffer stuff out so I was able to get a ton of really cool kits for $1 each. It really helped me to get out of here and get some fresh air and some perspective and distance.

The thing is that we would have been stuck here all weekend anyway even if we would have gotten the PICC because by the time they confirmed what the meds would be (she's on stuff but they were awaiting culture and sensitivity just to be sure that the bacteria hadn't changed from the last culture) it was too late on Friday to set up home health. See you might think that hospitals are 24/7 facilities but in reality unless it's a trauma situation they only handle basic care outside of banking hours. It sucks!

I had hoped today (Saturday 12/20) would be drama free but we did have a smidge of drama this morning, that we were able to fairly easily resolve. They came in and drew her blood, and then at like 9 phlebotomy stuck their head in and said they were here to draw her blood. I said.. umm she was just stuck 2 hours ago. so I go out in the hall and her nurse says it was a bad stick this morning and they had to discard it but she thought the residents were going to restick her so she called them. I got on the phone with Steve (he's at home because of another saga about catheter size and how they can't get the right supplies here so he's waiting until our amazing little neighborhood pharmacy opens to see if they've gotten them in yet) and told him what Carol said and that she said her glucose from that bad sample was 900... LOL she'd likely not be conscious with a blood glucose of 900. So we were prepared to argue that by history that's clearly a bad result and could the y just redraw tomorrow since she's been stable. But the attending basically said the same thing as I did. They may still have to restick her this afternoon after the prograf level comes back and they call that into Dr. M because we dont know if the prograf level would be affected by the glucose or not.. but come to think of it she won't want her restuck because they only run prograf twice a day at 7:30 and 10:30 so might as well wait until tomorrow... cool.

The resident in rounds this morning said that Katie has pylonephritis in the allograft (in english that's enflammation of the kidney in the transplanted kidney) which is different that the diagnosis we had been talking about which is uti of the lower urinary system (aka the bladder.) So I let them finish and then asked if there was something that had changed to change that diagnosis or was that just wording and the resident said not changes she had pulled that diagnosis off of something else (little ugh! because it was just wording but still these guys have got to be more careful and thorough.)

So... the PICC line placement is scheduled for Monday (12/22) and IF it gets done early AND we can get home health scheduled for that evening we could go home then but a.) it's not likely that those two things will happen and b.) even if they did we'd have to come right back here at 8:15am Tuesday morning for the next cytogam infusion. So... we're likely here until late Tuesday afternoon.

And that brings you up to date. If you read the whole saga you deserve an award but it would be dwarfed next to the one that the three of us deserve :o)

We're Still Inpatient

2008-12-20T07:22:00.000-08:00

This has been our second to worst hospitalization ever in the history of the over 30 hospitalizations.

I'm going to try to cut and paste some of the details from some emails I've been able to get out here and there. Please forgive the typos, and please feel free to leave knowing the following:
-this place stinks (and it smells bad too)
-residents are a pain in the ... neck
-I fear for the future of medicine
-we have NO CHANCE of going home before Monday afternoon and more likley Tuesday afternoon
-if we do get out of here Monday we have to come right back on Tuesday anyway

If you want details, read on...

Thursday 12/18:
First they wanted to draw her blood at 7am and she had taken her prograf at 8pm the night before so it was going to be a bad result so I refused it. Later I got the real explanation on why they wanted to draw her blood early, it was a perfectly good explanation but they didn't know why they were just doing what they were told and when they were questioned instead of saying they were acting on an order from Dr. M they just said "this is what we usually do".. that may be fine for other parents but I know that this is a new batch of residents who just got onto peds a week ago so don't tell me about your "usually" you just got here...ugh. I told Dr. M had they given me the reasonable explanation I would have gladly let them draw her blood earlier and she agreed that I was right to delay them to the time I had previously been told without the explanation.

Getting her meds ordered properly was a two day affair, and people let me tell you, I have a spread sheet of her meds with EVERYTHING on it that I hand to a resident and a nurse, and anyone else who asks about her meds. However even by Thursday morning her Prograf (that HAS to be given ON TIME) wasn't on the floor in time so I had to give it to her out of our meds from home. And her prednisone wasn't ordered (gave that to her from our home stash as well), and they were delayed in getting her Concerta to the floor.

Then there is the ongoing problem of getting her bowel flush solution. I started giving them the list (2 things) of what we needed at 3:30 Wednesday afternoon and by 9pm that night it still wasn't on the floor. Thursday morning the barely english speaking nurse from Wednesday night night said that it did come up but she was confused by the wording so she sent it back. So at that point that wasn't resolved for Thursday evening, but here's the funny part. They told us that the pharmicist would be in to discuss it with us because they're confused. (and please let me tell you what we need... we need one 500ml bag of 3% saline (they mix different concentrations of saline ALL THE TIME), and a bottle of liquid glycerin that they use for medication suspensions (making a pill into a liquid)) I wasn't there when the pharmacist came so Katie handled it LOL. she was right on the money with what she told them. She said she had to repeat herself like 3 times before they got it.

The biggest problem then and now is that Katie is on what they call contact precautions, everyone who comes in to her room has to wear a gown and gloves, and she can't go to the teen room where she LOVES to hang out and do stuff, they have a wii, ps2, xbox, movies, crafts, computers, etc. so that's really upsetting her. They bring stuff to her and we bring stuff from home but it's not the same, she's pretty much confined to her room. We can go for walks if she wears a gown and gloves but that's only so fun.

The best part about Thursday was it was pet therapy day and they brought the dogs to Katie's room since she couldn't go to them.

I'll try to get more details out later but this computer/internet connection is threatening to not save my post and well that would annoy me.

Here We Are Again

2008-12-18T08:09:00.000-08:00

We're admitted and let me just say that ALL of us have lost our patience for this place. We have a new batch of residents and I've been arguing with them all morning about her med doses, times, blood draw times, bowel flush, etc. They're arrogant and dissmissive and I'm frustrated. The last batch was much more compassionate and eager to learn, not so much with this new crowd. I have no idea how long we'll be here. Dr. M. mentioned a PICC (long term IV) and home antibiotics but not until after the latest culture comes back and that won't be until lunch time on Friday. It typically takes a good 24 hours to get home health set up so.. I just don't know. We're all tired and frustrated.

The good news is the concensus, across general peds and Dr. M is that we are not dealing with rejection at all. The kidney function labs are still stable creatinine this morning was 0.7. We are dealing with a nasty set of urinary bacteria that we have to be aggressive about because of the fact that she is a kidney transplant patient, both becuase she's immunosuppressed and because it's so important to protect that kidney from having to deal with anything other than it's normal functions.

Your thoughts and prayers are appreciated!!

Back to UMMC

2008-12-17T06:56:00.000-08:00

I left a message for Nancy this morning, but when Katie's pain got worse I called again to the main office and got Dr. M. As predicted she wants us to come down there, as not predicted we have to go to the ER and we will likely be admitted for a day or so. She doesn't sound like we're talking about rejection she only mentioned problems with clearing the infection. The kidney function labs from yesterday are still stable (that's a good sign.) More later when I can, it may be a while.

New Reason for Concern

2008-12-16T16:16:00.000-08:00

Katie started not feeling well this afternoon and she is having pain and swelling over the site of the new kidney. Hopefully this is just from the infection that we already know about and nothing more. We'll call Dr. M's office in the morning and I suspect we'll be headed to the hospital to see her shortly after that.

Update

2008-12-15T18:06:00.000-08:00

I got a request for an update, sorry I needed that shove.

The irrigations are going REALLY well. If we get the temperature of the saline right she says she doesn't even feel it. She and I invented something we call the "sloshy" dance for sloshing the solution around in her bladder so there's even some laughing and frivolity during the irrigations. I'm not sure that doing it with just the saline is doing any good so we may have to switch back to the acidic acid solution that we used a year or so ago. Katie wasn't happy to hear me mention that be later she said she's going to go into it with an open mind and hope that it's as easy as the saline.

Her teacher is coming by most afternoons and she's really enjoying that.

I was just re-reading previous posts and apparently I forgot to mention that we got permission for Katie to go back to her dance class. She only had 2 more classes before the holiday break anyway but she wanted to go back. She came home with a flyer about taking a pointe class. Of course how could we turn her down so we took her to have her fitted for pointe shoes and she'll start that added class after the holiday break.

We're going for labs here locally tomorrow and dropping off a urine sample for urinalysis and culture, we won't know any results on that until at least Thursday.

Ultrasound results

2008-12-11T15:41:00.001-08:00

We got some not so good news today. The ultrasound report came back saying "significant amounts of debris in the bladder (presumably mucus) as well as in the allograft" (the allograft is the transplanted kidney) so they want us to do twice daily bladder irrigations with saline. That involves inserting a catheter into her bladder, hooking up a syringe and putting the saline into her bladder then pulling it back out or letting it flow back out (through the catheter.) We've had to do this before and it has helped with infections before. Katie is NOT happy because the last time we had to do this it was very painful for her. We were using acidic acid before so we'll use saline this time and see if there are things we can do to make it more comfortable. My concern is the debris in the new kidney. I asked the nurse from peds surgery who called, if the debris being there was a direct indicator of reflux (urine backing up from the bladder into the new kidney, that's something we battled for many years.) She checked and called me back and said it could indicate reflux or it could indicate that these infections (the first one or this latest one or both) originated in the new kidney. Both of which are potential problems that could be quite serious. The reflux could lead to additional surgery and the infection being in the kidney could obviously damage the kidney. So, I'm concerned. They don't want to do the test to check for reflux until the infection is cleared. I'm not sure I understand why but for now we'll go with their plan of antibiotics and bladder irrigations.

Cytogam Infustion #2

2008-12-10T16:57:00.000-08:00

Everything went well today but we don't have results from anything, no lab results, no ultrasound results.. we got nothin' :o)

Same Infection New Bacteria

2008-12-09T10:31:00.000-08:00

The culture results came back today and showed the growth of a different bacteria than the one from the previous infection. A new abx is being faxed in to our pharmacy and Steve will pick it up on the way home. They also want to do an ultrasound tomorrow (when we're going to be at the hospital anyway for the next Cytogam infusion) to look at her native kidney as well as the transplanted kidney. Nancy said they will be looking for stones and/or debris. I think this is more precautionary than anything. Katie is not happy about the idea of having an ultrasound because they tend to push on your abdomen with the "probe" trying to get a good look at things. Luckily we know we will have our favorite ultrasound tech Oscar and I made sure with Nancy that they will be briefed on her anatomy and what to look for so they won't spend too much time trying to look for what they would find in a normal anatomied person.

Update

2008-12-06T05:25:00.000-08:00

Just wanted to let everyone know how things are going. We came home and took a couple of days to just rest and get the bug out of our systems. When we left the hospital Dr. M told us that Katie didn't need a blood draw until Thursday (12/4) and that we could do it at our local lab instead of coming down there. That was great news. Yesterday we were having phone problems, so late in the afternoon when we hadn't heard about the lab results I called Dr. M. Things are mostly good. Her kidney function levels are still great and stable. But... she has white blood cells in her urine. I'm not sure whether that's still or again but regardless it's a concern. Dr. M wants to wait and see what the culture shows and see how Katie does between now and when we see her on Wednesday. If she starts to run a fever or shows symptoms of an infection that will change things. I also reported to her that Katie's blood pressure was a bit high when we took it yesterday. This didn't surprise any of us as we restarted her ADD medicine which has been known to cause a rise in her blood pressure. We will likely need to adjust her blood pressure medication. We're supposed to keep tracking it and we'll discuss that more on Wednesday also.

The good news is we don't have to have any labs drawn or go to the hospital again until Wednesday when we have the next Cytogam infusion.

All in all we're really doing great!

We're Home

2008-12-02T12:19:00.000-08:00

All of Katie's labs this morning looked beautiful so they let us go. We had a small scare right before we left when she started to feel queasy again but it turned out she was hungry. Steve and James seem to be on the mend, and I'm honestly not sure where I stand but I'm sure we'll all be fine in a day or so.

Update

2008-12-01T12:02:00.000-08:00

It seems as though there is some kind of gastrointestinal bug going through our house. While Katie wasn't feeling well on Saturday evening I started to not feel well and went to bed early. But since I made it through the night without having to get up I assumed it was sympathy feelings for how Katie was feeling. However, this morning Steve started to feel bad. I mentioned this to Dr. M this morning and she was not surprised and said "the labs would seem to bear out a gastroenteritis piece of the problem." That's clearly not the whole problem, the antibiotics are causing intestinal problems as well. We will also have to watch now that Katie doesn't have a recurrence of an overgrowth of C-diff. I mentioned this to Dr. M also and she was aware of Katie's history with C-diff and will help us keep an eye out and treat for that as needed. In 2001 and 2002 Katie had lengthy bouts with colitis caused by an overgrowth of C-diff. It's very hard to restore the proper balance in your colon after an overgrowth, so hopefully we won't have that problem, but with these high doses of abx it's really a possibity.

So, Katie and I are here at the hospital. I'm in the Ronald McDonald lounge. They have this nice room built and supplied by the Ronald McDonald house which has a nice TV, two internet abled computers, coffee, tea, a small fridge and a nice lounge area. Katie is in the teen room doing crafts. Tonight child life does Bingo here in the RM lounge. Steve is at home sick with the stomach bug, so we're having him stay home until he's more on the mend. The saddest part about that is that the kids don't get to see each other and that's hard on both of them.

The earliest we might get released is Tuesday afternoon. We have one dose left of the abx which will be done tomorrow morning. They're drawing labs in the morning including a Prograf level. Katie's liver enzymes were slightly elevated today, if they have gone back down tomorrow it would be assumable that the rise was related to the stomach bug, if not then adjustments will need to be made to her meds since several of them could cause a rise in liver enzymes. I got the impression that if her liver test looks good and her Prograf level is good then we'll be released.

Readdmitted

2008-11-30T18:17:00.000-08:00

Katie's morning labs showed that she was dehydrated and her blood pressure was elevated. They immediately started running fluids for the dehydration but the elevated blood pressure was an indication that she was possibly not getting enough of her meds orally due to the gastrointestinal symptoms. So, Dr. M wanted her admitted to UMMC. We were transported by ambulance from the local hospital to UMMC, not because of a true urgency just so that they could make sure we went from point A to point B without any other stops and so that the transfer could be smooth from a medical standpoint. She's back at UMMC. We believe she will be there at least until Tuesday afternoon because Tuesday is day 7 of the abx. I'll try to keep the blog updated.

I had a request for how I'm feeling, and I'm really feeling fine. I still have some abdominal soreness from time to time but mostly not where my incisions are. When you carry excess fat and they cut through your abdomen they kind of rearrange the fat and I seem to have a strip where there's no longer any padding LOL. It was funny, today one of the residents looked at me and said "where did she get her kidney?" I said, "umm from me." He was surprised because I look completely normal. I'm home this evening but I'll spend tomorrow evening at the hospital with Katie.

Tough Time

2008-11-30T06:31:00.000-08:00

Yesterday's abx infusion went great. However, in the early evening Katie began complaining of not feeling well, and by 6:30 she was clearly not feeling well. I'll spare you the details but she's miserable. We had to page Dr. M last night for instructions and Steve is going to talk to her again this morning. She's not been through this process with a kid with bowel issues so we may have to see if she can bend some rules for Katie.

Katie and Steve are back at the local hospital this morning. I'm on my way out to drop James at the gym and then join them.

Update to IV Antibiotics Plan

2008-11-28T13:46:00.001-08:00

We got a call from Dr. M this afternoon. She's so wonderful! She called to tell us that Katie's labs all looked good, renal function and Prograf level, but that she still does want to do 7 days of IV antibiotics (abx). However, she'd like to try to make it more convenient for us and offered to work with our pediatrician's office or a more local ER. The most local hospital happens to have a peds ER where we've had a good experience so we suggested that (because we both (Steve and I) agreed our ped's office couldn't do it) and it just so happens that Dr. M knows docs there. She called them and called us back and a doc she knows is on today and will be on tomorrow, so here's our schedule.

Tomorrow (Saturday) between 8 and 9 a.m. we'll go to the local hospital ER for just the IV abx.

Sunday between 8 and 9 a.m. we'll go to the local hospital ER for IV abx and labs but no Prograf level.

Monday closer to 8 we'll go to the local hospital ER for IV abx and labs with a Prograf level.

Monday afternoon Dr. M and Nancy will figure out what to do about Tuesday's abx. Dr. M will want to see us then anyway so we'll do that dose at UMMS she just wasn't sure if she could set it up to be done in peds endocrinology where the Cytogam infusion was done or if we would have to do it in the ER again.

IV Antibiotics Day 3

2008-11-28T09:03:00.000-08:00

We went to the hospital again this morning. The IV insertion was pretty rough today. The technician who did it was less than happy that Katie wanted the IV in her hand, but since we had used numbing cream on her hands that's what she really wanted. The technician was pretty passive/aggressive about it, she kept saying she didn't think the hand was a good idea but she would do what we wanted, but it would be more likely to fail but she would do what we wanted etc. Then when she did stick her she had a hard time getting the IV to bleed and kept asking Katie to make a stronger fist when she had her hand as crunched as it would go. The infusion was short and painless, it was done before the labs were back so we had to wait a bit longer. Unfortunately Dr. M is not as pleased as she would like to be with the labs. Her kidney function is still stable but her white cell count isn't dropping, so we have to go back tomorrow and Sunday for more of the same. Tomorrow she wants labs again including a Prograf level so we need to get there at 8 again. After she sees tomorrow's labs she'll decide about whether we need more labs on Sunday or not. It stinks but it's better than being in patient so we're trying to remember that.

1st ER Antibiotics Visit

2008-11-27T11:22:00.000-08:00

I just had to come in and share that our trip to the ER was relatively short and painless. They did in fact know we were coming. The meds and history questions were really minimal. We arrived at the actual ER area at about 9am and we were done and home by noon. We will have a different attending and different nurses tomorrow BUT we will have the same resident! Katie was telling him about her Daddy's stuffed mushrooms that he usually makes on Thanksgiving and he said "Yum" so we'll take him a few tomorrow.

First Cytogam Infusion and IV Antibiotics

2008-11-26T15:42:00.000-08:00

We were at the hospital for the better part of the day. The original reason for the trip was Katie's first Cytogam infusion. This is the med she needs to fight the EBV (Epstein-Barr Virus) antibodies that I have and she didn't. Dr. M came over to see is while we were there and let us know that her creatinine is still stable at 0.7, and her BUN is at 18 down from 25 last week. However, the last urinalysis showed another increase in her white blood cell count. That combined with the fact that Katie has some tenderness over the site of the new kidney lead Dr. M to be concerned that we aren't treating the UTI aggressively enough. So, we had an IV infusion of antibiotics while we were there, and we have to go back to the peds ER tomorrow (yes that's Thanksgiving Day) and Friday to have two more infusions. Tomorrow it will be the Mommy and Katie team so that Daddy can stay home to cook. Friday we're not sure who will take her, we'll figure that out tomorrow based on how it actually goes tomorrow and how I'm feeling. The ER attending is *supposed to be* expecting us and is *supposed to have* the orders for what needs to be done, but, well, we'll believe it when we see it. Wish us luck.

Labs Day

2008-11-24T10:34:00.000-08:00

We had to go to the hospital this morning for labs and we had to wait around for the results which will be rather typical for a few months. Around 11 we heard back from Nancy with the results, her creatinine is still at 0.7 which is great. However, her white blood cell count is up even more indicating that the urinary tract infection is pretty strong. Dr. M contimplated putting her in the hospital over night for her to have 2 days of IV antibiotics, but she had agreed if Katie was asymptomatic and "looked good" that she would try treating it orally, luckily she is both of those things so we got a prescription and were off on our way. We need to log her blood pressure twice a day for a while since the bottom number is a little high.

We go back on Wednesday for the first outpatient cytogam infusion. This is the med that is to treat the Epstein-Barr Virus discrepency between my kidney and Katie's blood. It's likely to be quite a long day as the infusion itself takes 4 hours.

Nancy is supposed to call us this afternoon with Katie's Prograf level and to confirm her new prednisone does that starts on Thursday.

Rough Spot

2008-11-23T15:41:00.001-08:00

That title sounds much worse than this is but... Katie is having a rough day. She's having some side effects from the prednisone specifically difficulty sleeping and moodiness... not a good combination. She's very upset about having to go to the hospital tomorrow and now says she didn't know she was going to have to go back this often even though it was clearly explained to her. She's complaining about the number of pills she has to take when it's less different meds now than before but about the same number of things to be swallowed. It was clearly explained to her that we were trading one set of meds for another and one set of problems for another but with the moodiness she's just upset about pretty much everything :o(

Big Giant Thank You

2008-11-21T13:14:00.000-08:00

I just wanted to post to let everyone know that we are all very touched by all the cards we have received. Each one is just a mini blessing, reassuring us that we are more cared for than we can possibly imagine. A big, giant, thank you to all!!

No news on the meds we'll be using to treat the UTI because there wasn't a culture ordered yesterday. We got a call today asking us to go to LabCorp and drop off a sample to be cultured.

We got out a bit today because I felt worse today than yesterday and worse yesterday than the day before. Moving is definitely key to my recovery.

Katie has an odd situation, there is what feels like a piece of metal stitch that can be felt under the skin in an area adjacent to her incision. It is causing her pain both at rest and when moving. We called the surgeon's office this morning and I think Steve got a call back from them but I'm not sure, if he did that leads me to believe they said it's probably nothing serious. I'll try to get more info on that and post about it later.

Today's Labs

2008-11-20T13:36:00.000-08:00

Today's labs were great, her creatinine is 0.7, her prograf level is 9.1, both are good results. Unfortunately she also has a urinary tract infection of some kind so tomorrow we'll start treating that. It's usually not much of a reason to worry but I guess with the immunosuppression it's a little bit more worrisome than before. We should know what med we'll use to treat this infection sometime tomorrow.

WE'RE HOME!!

2008-11-19T12:45:00.000-08:00

The title about sums it up. Katie was released from the hospital around lunch time today. We have to go right back in the morning for labs but luckily Dr. M understands the power of one's own bed LOL.

I also had my follow up appointment today with transplant services and I'm cleared to drive. I mentioned my magazine job and that I wasn't planning to go back to it until after the first of the year and he said I may need to ramp up my activity when I do go back after not doing anything like that for so long. I'm free to go back to my MT work when, as a family, we have time for me to do that. Right now there are a lot of meds to get used to and a lot of blood draws and such so... we'll see.

On The Floor

2008-11-18T16:43:00.000-08:00

I have had a bit of a rough evening so I apologize for being "short."

Katie was moved out of the ICU yesterday (Monday) late afternoon, she is in a regular floor bed and a very nice room it is too. It's one of the recently remodeled rooms on the floor.

She is still doing very well and the current plan is to look at tomorrow(Wednesday 11/19)'s labs and as long as they are where Dr. M would like them to be then she will release her to come home. We will have to go right back down there on Thursday for labs but after that we wouldn't have to go back until Monday.

I know lots of you have been waiting to be able to visit. At this point I'm thinking we should wait until she gets home since that will hopefully be tomorrow. So anyone who wants to visit please give us a call as soon as tomorrow afternoon and we will let you know who plans to come when and find a time in our schedule for you to come by. I hope you can understand me being a little controlling about visiting. Please remember that Katie is on medications to suppress her immune system so it is important that we keep her from as many germs as possible. Her dosages of these drugs will be able to be decreased over time but she will always and forever now be on drugs to suppress her immune system. If you or a family member have a cold or flu or any other contagious virus, please wait and come see us when everyone is well.

Moving right along

2008-11-16T15:48:00.000-08:00

I'm sorry that I'm unable to be more communicative. Since I was released I use all my daytime energy to help occupy and take care of Katie, and by dinner time I'm exhausted and can just work on getting home, eating, relaxing a bit and sleeping.

Katie continues to do very well. Her kidney function has gotten even better than yesterday. They discontinued her IV fluids today and as long as she's able to take enough fluids by drinking they will keep that disconnected. That means that in between infusions of meds still being given by IV she isn't connected to an IV. The plan for today had also included removing the central line IV, although it hadn't yet been done when I left around 5pm. The ICU attending doctor is trying to convince Katie's team to remove the foley cathether that is draining her bladder constantly and apparently everyone is point at each other on who will make the final call on that.

One of the two immunosuppressant meds (Prograf) is adjusted based on blood levels. Her Prograf level has come up very quickly which is a good thing, they have actually been decreasing her Prograf level. Also they have already begun to taper down her steroid (prednisone) dosage, which is very releaving to me and other members of my family who have lived through long term high doses of prednisone.

Her nurse gave her a "spa day" today, they washed her hair (with a special hospital stuff that didn't seem to do a great job but it made her feel better) and gave her a bath in bed. The nursing care has really been super in the PICU.

Well, my belly hurts and my back hurts so I'm off to bed.

We are officially post transplant

2008-11-15T04:13:00.000-08:00

I'm sorry that it has taken me so long to get here. I was not given good information about my recovery... more on that later.

Katie is doing VERY well. She is progressing as well as possible. Her creatinine is all the way down to 0.7 and folks that's the creatinine of a normal health person born with two normally functioning kidneys. They have been able to disconned the aterial line that was being used to track blood pressure, and have also taken her off of oxygen. I have been over to see her 3 times now.. I think. There hasn't been any discussion of her getting out of the PICU and this is really a monitoring issue. Dr. M still wants her oxygen saturation monitored constantly and her blood pressure monitored more often than the every 4 hours they typically do on the floor. She hasn't really said what it is that she's waiting for that she'll loosen those restrictions. However, we're fine with that because since we've been here we've remembered how good the care is in the PICU and she does have one of the isolation rooms so it hasn't been bad.

My recovery has been much more difficult than we anticipated. We were told 1-2 days hospitalization... well that must have been for when Superman donated a kidney. I have had a LOT of trouble with gas pain. They blow up your belly with gas during laprascopic procedures so they have room to work and they will tell you that they get it all out before the finish but they are full of malarkey LOL. I'm hoping to convince them to spring me today but I'm not optimistic since I still needed IV pain meds last night. In the event I do get sprung I need to go home to my own bed to repair my back as it has been killing me since day 2. None of the chairs here have any lower back support and the beds... well they're just awful.

There have been a lot of issues with my care but I'll have to try to remember to get into them later because... my back is killing me in this computer chair.

All the thoughts and prayers are and have been very appreciated. I'll try to update again when I can.

I apologize for any typos.

Last Pre-Surgery Update

2008-11-12T02:31:00.000-08:00

Dr. M finally called at about 8:50pm last night, she said everything was a go. As I type Katie and I are ready to walk out the door (along with Daddy, James, Grandma and Grandpa.) We will try to get an update posted to the blog this evening but no promises.

Please be thinking of us and prayers are much appreciated!

Update

2008-11-11T16:23:00.001-08:00

Ok, here’s the most updated information. At about 5pm Nancy called and said that all but one of the tests was back and everything looks like a go. She had sat in on a pre-transplant meeting about Katie and none of the transplant people expressed any concern about going forward. There was one last test that hadn’t come back, it was due back around 7pm. Dr. M wasn’t willing to give us the final green light until she saw the results of that test. As Nancy said, “Dr. M is very thorough,” which we appreciate about her. It's now 7:20 and we haven't heard from Dr. M...

The Last Snag... we hope

2008-11-10T16:09:00.000-08:00

I'm just about typing through tears so bear with me.

I just got off the phone with Dr. M (nephrologist.) And quite honestly I'm just going to repeat what she said because I don't really understand this very much. Part of the blood from the last blood draw (on 11/3) was used to do a final cross match (mixing of my blood with Katie's). This time the result showed an antibody that Katie has had for sometime reacted with my blood. In the previous cross match that antibody was there and yet didn't react. She has consulted with Dr. S (peds transplant surgeon) and the director of the lab at the hospital, as well as colleagues at other transplant centers. The general consensus is that this is a non-issue. However, she would like more information. Katie and I are off to the hospital in the morning (well one of the office buildings down there) to have blood drawn. They will run another cross match with some of each of our blood, as well as running one with two samples of Katie's blood. If this antibody reacts with itself in Katie's own blood then this is definitely a non-issue. If that doesn't happen and it reacts again with my blood then Dr. M will discuss this with Dr. S and they may decide that they want to do some antibody lowering treatments which would mean that we have to postpone the surgery. There isn't any indication by any of the professionals that this will mean my kidney won't be the one we use for the transplant.

I can't imagine what it will do to this family if this surgery has to be postponed.

Quick update

2008-11-05T08:43:00.000-08:00

We did hear back from Nancy. Dr. B (anesthesia) is ok with Katie's potassium level so the urgency to bring it down is gone. However, we are still to do Katie's flush twice a day. Between that and her fatigue she's officially not going back to school.

We are to give her lisinopril on Saturday but not on Sunday, this worries me about her blood pressure but I guess it will be fine.

I also got a call yesterday about a trace amount of blood in my urine. They were going to check with the doctor and see if they wanted the test rerun but I haven't heard back.

I've kind of been wondering about how things will go with the rest of Katie's meds. I hope that they will add them back in only as needed. I mean she's on 3 blood pressure meds, a med for acidosis, potassium and phosphorus reducers, and iron that she may or may not need after transplant.

We got our first look at her immunosuppresant drugs yesterday, one of them is a very small capsule and the other is average sized. Not that their sizes really matter, she swallows up to 10 pills at a time now, but it was interesting to get to see them.

Pre-op Testing

2008-11-03T16:38:00.000-08:00

Today was pre-op testing. Another day of living through how disjointed the hospital is and trying not to let it upset me... I didn't do a very good job. We arrived at the "PREP" center and were given forms to fill out as if they'd never known us before. An admissions rep (in a fabric walled off area in the waiting area where everyone can hear her) "confirmed our information." Then Katie was called to the back, we insisted that I go along but that rattled them. We weren't sure that the additional labs that Dr. M wanted were ordered so we had to try to reach someone in her office which took a while. Someone from anesthesia came in and he seemingly had no information from Dr. Bellefleur (Katie's personal anesthesiologist who I had spoken with Friday evening), and was guessing at what meds she should and shouldn't take the morning of surgery. He used phrases like "I understand we're considering possible transplant," and "I would figure," "seems as though." Those are phrases that I don't tolerate, either you know what you're talking about or I have no use for you, there are enough people in this process already. A few sentences in with him and someone came to get me so I left Steve to deal with him. I had blood drawn, gave a urine sample, then anesthesia popped in and said she needed to review my chart (wow what a concept) and would I like to wait with my daughter (again, wow.) They were finishing up with the anesthesia idiot, who ended up getting rather snippy with me because he was just making things up about what meds should could and couldn't take, he didn't want her to take the Lexapro but Dr. B and I had gone through her meds one by one with her giving me instructions, the only one that was/is still in question is the Lisonpril but Dr. B said Dr. M would instruct us on that. It's awful to have to ignore doctors but the communications just stink there.

Katie was visibly run down and tired all day. She's having dizzy spells when she stands up from sitting or lying. It's hard to watch. She just laid back on the exam table the whole time we were in the PREP center.

My anesthesia person came in and was well informed, ran though my history, asked a few questions, listened to my lungs and heart, and that was it. We resolved the blood draw issue and were off to transplant services. We had arrived at the PREP center at 8:10 and we didn't leave until almost 11.

We went over to transplant services. I had to see the financial person, and the social worker. Then we met with Dr. Character (LOL)... I mean Dr. Schweitzer, Katie's transplant surgeon. He's such a character. Katie asked where her incision would be and he drew it on her in pen, which was actually really cool. He went through a lot of risks with us, both from the surgery and after the surgery. It was really nice have that be an open relaxed converation, usually we get that info from a resident who's anxious to be done with us. This was a real thoughtful conversation where we got complete information not just terms thrown on a piece of paper and speedily read back to us.

When we got home I immediately took off to do my magazine job, then went to pick Katie up from Dr. Gallagher's office. When I got home there was a message from Nancy in Dr. M's office about the labs. She said they are pretty much unchanged. Potassium is still at 5.4. But she said that Dr. M seemed ok with that??? We're confused because Dr. M told Steve that it HAD to be 5.0 or below or anesthesia could refuse to put her under. And she didn't tell us if we should continue to do two flushes per day or not. She also said we should discontinue the Lisonpril on Sunday?? So I left a message in her voice mail asking for clarification on the Potassium issue, and asking if she should take the Lisonpril on Sunday or if Sunday is the first day of no Lisonpril.

We're pretty sure that Katie won't be going back to school before her surgery, at least not full days. There are only 5 days of school before her surgery, and they are the first 5 days of the 2nd marking period, the rest of which she will miss anyway.

As I mentioned above, Katie is really not feeling well. She's drained, tired, dizzy, and just generally doesn't feel well. When she's home she just lays in her bed watching tv, or doing sedate things in her bed. She's taken to carrying her blankie around with her everywhere she goes. It's hard to watch but everyone keeps telling us those are the things that will change immediately after the surgery as long as the kidney "takes."

So that's where we are, any questions ask away...

Another Snag

2008-11-02T11:13:00.000-08:00

Katie's potassium levels are currently too high to put her under anesthesia. We had labs on 10/28 and Dr. M. called us the next day to say that we needed to try to hydrate her and also to add more kayexalate to her bowel flush solution and redraw the labs on 10/30. So we did that, and it did come down but not far enough. So on Friday Dr. M asked that we do 2 flushes per day with the increased kayexelate. So in order to facilitate that and not take Katie from her Halloween activities we pulled her out of school early that day.

She and I are both off for pre-op labs tomorrow, we expect to spend most of the day at the hospital We both have to have labs drawn, give urine samples, and have histories and physicals again. I may or may not be meeting with someone from anesthesia. It's been very frustrating trying to figure out this day because no one can tell us exactly what will happen and there's no time schedule. The recheck for the potassium has been ordered to be included with the labs already being drawn tomorrow, hopefully that won't get messed up.

If we can't get the potassium down this way, we may have to try some dialysis. So Katie and I talked to a very nice lady at our church today about local dialysis centers, and she's going to call some of her camp friends who have been through it. Ultimately if we can't get it down, we would have to postpone the surgery until enough dialysis gets done that it comes down.

I also spoke to the anesthesiologist for Katie on Friday evening. That was a bit funny, we were at our church's trunk or treat event at the time. She gave us some new info and some revised from what we knew before info:

We will need to stop one of Katie's blood pressure meds a few days before the surgery and Dr. M will discuss this with us on Monday evening or Tuesday 11/3 or 4.

She will give Katie some oral Valium upon arrival to the PACU , she will place the first peripheral IV in the PACU while she's awake as we did for the cystoscopy, then will give her Versed through that first IV.

Katie and I will both report to the Peds PACU (I was planning to ask tomorrow where I should report.)

Katie and I will be taken from the PACU to our respective ORs at the same time because there is so much they want to get done on Katie before the actual surgery starts including: a central line, an arterial blood pressure monitor which can later be used for blood draws, a couple of other peripheral IVs, and a Foley catheter for her bladder. The volume of IVs is for a couple of reasons. The central line is much more stable so it will last longer. Peripheral IVs are rarely good for more than a few days at a time, when someone is going to need the care Katie is going to need a central line is preferred. The other lines will be in place to assure access when it is needed, so should one or two of the lines fail for some reason she can still get her the medicine she needs. The peripheral lines will be pulled as they fail and as long as there is still a functioning line they won't be replaced they will have served their purpose.

She will not be using an epidural for pain control but instead a PCA that will dispense Dilaudid a very good narcotic pain control medication.

So... that's where we are. Any questions, ask away.

Transplant Conference

2008-10-28T16:38:00.000-07:00

Today we had our transplant conference with Dr. M, her nurse Nancy, and the pediatric social worker assigned to us Megan.

We got a lot of information, and had some really great discussions. Here are some points from today:

Katie will actually start taking her immunosuppressant meds a couple of days before the transplant.

They expect her to be in the PICU for 1-3 days. The reasons for her being there is because of the level of monitoring that is needed immediately following a transplant. Typically transplant patients get one of the 4 isolation rooms in the corners of the larger "bull pen" area. The social worker is going to start working on the PICU nurse manager to allow James in to see Katie while she's in the PICU (they have a rule prohibiting kids under 12 to visit.) They expect Katie to come out of the OR with an epidural. She will have several IVs and they will be running lots of fluids so that she produces lots of urine. She will have at least one blood draw per day throughout her hospitalization, early on this could be as many as 2 to 3 blood draws per day. They will try to use IVs for these as long as they continued to be available for this.

We had previously been told (by Dr. M) to expect a 5-7 day hospitalization but today she said 1-2 weeks :o(.

After she's discharged we will be seeing Dr. M 2-3 times per week at first, this will taper to once per week, then every other week, then every 3 weeks, and so on.

We had a long discussion about the use of prednisone (which is a steroid) in transplant patients. Steve and I had read (and printed out) various studies about discontinuing steroid treatment, or not using any steroids at all. Dr. M was obviously very well read on the subject. She discussed with us that removing steroids means adding or increasing dosages on other meds so everything is a trade off. All of the meds involved can have undesirable side effects. There's no denying that long term steroid use is or at least can be damaging to the body on several levels. Dr. M participated in one of the studies we read. She has, since then, begun reducing dosages of prednisone, and she tries within 6 months to have her transplant patients down to very low doses every other day. Her patients have responded well to this protocol and haven't seen the damaging side effects continue once they are down to the low doses. She's not opposed to trying to discontinue the prednisone after a minimum of a year. We were very happy with the discussion, this is a conversation we will revisit.

The main immunosuppressant med they would like Katie to be on is Prograff. Initially she will be on Prograff and Cellcept. In addition to those she will also be on prednisone, and something to prevent mouth thrush, and some additional IV meds I'll explain later.

There are a couple of things of concern that can be received by Katie through the kidney I give her. One of them is CMV, and the other is EBV (Epstein-Barr, the virus that can cause mono.) I am negative for CMV but, unfortunately, positive for EBV. This means I have antibodies from that virus. I may or may not have had mono at some point in my life. The EBV antibodies will travel from me to Katie along with my kidney. She will need to be treated by IV antibiotics for either 6 or 12 weeks after transplant, and she will remain on an antiviral medication for longer than if we didn't have this EBV issue to deal with. If she develops the EBV virus it can cause rejection of the kidney. Even if she doesn't develop it, having the antibodies and treating for them leaves her suseptible to a particular kind of lymphoma. Obviously I feel horribly guilty. But the fact is that finding a kidney that is both CMV and EBV negative is pretty unlikely. Dr. M feels this is an acceptable risk to get a kidney so closely compatible.

There were a few other incidental things from the meeting but they can wait for later.

When we got home we got a call from Dr. M that Katie's creatinine is up along with her potassium and albumin. We're hoping she's dehydrated and that getting her to drink lots will bring us back down to reasonable levels. She didn't mention what would happen if those levels don't come back down.

Moving right along

2008-10-22T11:30:00.000-07:00

Ok... things have started to move very quickly.

I got a call earlier this afternoon from the donor coordinator that my blood pressures have been cleared. There is now nothing else standing in the way of me donating a kidney to Katie. Debbie was sending an email to Dr. Mendley and her nurse Nancy. She is also setting up the pre-admission testing date for me and coordinating that with the same thing for Katie so we can be there at the same time.

Then Nancy called to set up a pre-transplant consultation with Dr. Mendley. She gave me two dates and a few sets of times so that she can find a room for us to meet in. So that meeting is going to take place on either Monday 10/27 or Tuesday 10/28 (yep that's just a few short days from now.) I asked her where we were on getting a confirmed surgery date and she said she believes that everyone is still planning on 11/12 but when she calls me back to confirm the date and time for the pre-transplant meeting she will have that confirmation for us as well.

One step closer

2008-10-21T18:13:00.000-07:00

At long last we finally have the results of the retest of the one that came back bad... and it came back good!! Yay!! We're very excited.

Just one more hurdle to cross. When I was at the hospital for my donor workup my blood pressure was high. That was kind of understandable considering they took it at the end of the day, and considering how that portion of the day went. However, it's not acceptable for going forward with surgery. So, I need to be able to show that that has come down. This evening I'm taking my blood pressure at home and I've gotten two readings with the bottom number under 80 which is what the committee (that approves donors) wanted so, it looks like we should be good to go on that.

As soon as we're officially past this I'm hoping we can nail down the surgery date.

BAD LAB PERSON!

2008-10-17T19:03:00.000-07:00

The lab messed up really badly and made it so that the test couldn't be run. I'm redoing it tomorrow and we hope to have results early next week.

Katie is off to Camp All Star tomorrow. It's an overnight camp for kidney disease kids. She had fun there last year, hopefully she will this year too.

If you happen to be in contact with verizon wireless any time soon, please tell them you do not appreciate their treatment of your handicapped friend/family member. Katie was out with Steve today shopping for a new cell phone when she had a belly button leak and was denied access to their restroom. We're addressing it with them but it couldn't hurt for more people to mention it. And yes they were advised of her conditions and what the need was.

Cystoscopy and a Birthday Party

2008-10-14T11:42:00.000-07:00

I'm sorry it has taken me so long to blog about the cystoscopy. I've started my new job in medical transcription, and Katie's birthday party was this past Saturday, and one of her counselors from camp kydnie came down and spent the weekend with us (which was GREAT!)

Here's what I wrote at the hospital (on Wednesday 10/8/08):

We got on the road at 10:20... only 5 minutes after we wanted to leave. Unfortunately, about 10 minutes in to the trip we realized we had forgotten blankie and floppy, Katie's beloved baby blanket and stuffed bunny. So, I dropped Steve and Katie off at the hospital and headed back home. I got back to the hospital at about noon and reunited with them in the PACU (pre/post anesthesia care unit.) Dr. Voigt literally followed me in to tell us that his OR schedule is way backed up because a baby was born with his intestines on the outside of his body and he needs to take care of that first. Obviously, we were very understanding.

However, Katie couldn't eat or drink and she got pretty annoyed about that throughout the day. She didn't go into the OR until close to 5pm! The procedure went really well. Dr. Voigt said that her bladder looked better than he expected. He did take 5 small biopsy samples to be sent to pathology. We supposed to call his office if we haven't gotten those results by this Friday (10/17/08.) Katie spent very little time in recovery and we were on our way back home around 7pm. She went right to bed.

Luckily we had asked Grandpa to come and hang out with James until we got home. Since she was originally scheduled to go into the OR at 11am we kind of thought we might have been home by the time James got home from school at 3pm but.. that didn't happen. We even had to ask Grandpa to cook dinner for James.

For the next day she was a little sore when she cathed but by Friday she was completely back to normal.

Here are some pictures from Katie's Birthday Party:

This one is of Katie and one of her counselors from Camp Kydnie, her visit really made our weekend!!Everyone had a great time. At the party everyone tie dyed a t-shirt and a pillow case and decorated a canvas tote bag. The next day Katie, James, her counselor and her cousin/bff dyed all the left over stuff... I'm still washing everything up.

And finally... I dropped off the sample for the more extensive test for me and we should have the results by the end of this week.

Trip to the OR before the big surgery

2008-10-05T11:19:00.000-07:00

Katie has to have a short procedure this week on Wednesday afternoon. It's an easy procedure called a cystoscopy. Her surgeon wants to send a camera in to take a look at her bladder and also take a biopsy of it. He just wants to make sure he won't find anything unexpected when we get in there to do the transplant. She will miss the whole day of school on Wednesday and then school is closed on Thursday which works out very well in case she's not completely back to normal by then. Even though it's a quick, easy procedure that she has actually had done many times, it still invovles anesthesia so there's always risk.

Just to follow up on my previous post, I haven't received the lab slip to go pick up the materials needed to do the new test. I'm hoping to receive it this week so that I can plan to do the test next Tuesday since I really need to do it on a day when I'm home all day.

Snag

2008-10-03T17:33:00.000-07:00

We have hit a snag in the path to having me officially approved to be the donor. One of my tests came back with a result that's not acceptable. We're going to run a more extensive test in a different way to see if we can get the result we need. For those of you inclined, please pray that this new test gives us the result we need so that we can move forward. Thanks.

Just a little update...

2008-09-23T16:20:00.001-07:00

It was brought to my attention that I didn't list our possible surgery dates here. We are looking at November 12th or the 19th.

Also, I did reach the new director and the new assistant director of camp kydnie today (they were on staff before but are in new positions.) They had emailed Katie's counselors that we're trying to reach but they said they will email them again.

We have Camp All Star coming up the weekend of October 18th, and the weekend before that we're having a birthday party for Katie.