Bad blogger!

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!!

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

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

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

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!!

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

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!

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!

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

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

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

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

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

The California Trip Report

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

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!

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

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

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

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

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

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

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

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

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

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!!

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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..

... 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

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

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

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...

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

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.