Labs

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!!

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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...

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.

This Donor is Exhausted!

Today was my long day of donor testing. I could go into detail but suffice it to say... it's over and I survived. The actual testing wasn't bad at all, it's the human factor that annoys the snot out of me. Everyone seems to think that things will be fine from this point forward, although there is still considerable drama over the one medication that I take that is typically a treatment for diabetes. The donor coordinator nurse said she will have all my results in about 2 weeks and will call me then to review them and let me know about any follow up testing required due to the results.

Katie has Dr. Voigt (her surgeon/urologist) and a renal ultrasound tomorrow, and then an EKG and echocardiogram on Monday.

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

Looking at Dates for Surgery

That's right, one of the things we discussed today with Dr. Mendley was possible dates for surgery.

I had a TON of blood drawn before our appointment with Dr Mendley, and also a urine sample. I'm very nervous because I have had protein show up in my urine before and I'm hoping that that either won't happen or it won't be a deal breaker.

Dr. Mendley wants to try to help Katie with her energy level between now and the surgery so we're going up on her Procrit (bed blood cell booster given as a shot) to every 2 weeks from once a month. And her phosphorus went up a little so we're adding more of one of her capsule meds called Phoslo.

Since we have me as a match, and all that's left is the workup Dr. Mendley said we should start talking dates. We asked that we please not do anything in October because of the birthdays adn that would likely be too soon anyway. The first week of November is out because of something going on at the hospital. She said the earliest would probably be the 2nd or 3rd week of November. Since Katie is relatively stable waiting a month from then wouldn't be out of the question either. She asked us to think about it, talk about it as a family and let her nurse know what would be our preference. Obviously there are doctor and surgery schedules that have to be worked around but they will work with us as much as possible. Steve and I would just as soon get the surgery done so we can move on, so I'll be emailing Nancy (the nurse) to let her know that the earliest they think will work is fine with us.

After the appointment Nancy gave us the order for the EKG and Echo, and the chest x-ray. The former are scheduled for 9/22 and the latter was done on a walk-in basis today. Katie also needs to see Dr. Voigt and I set that up for 9/19. On the 30th we will go to the pediatrician's office for her to get an MMR booster, a tetanus shot and a tuberculosis test.

We were able to meet with one of Dr. M's transplant patients today and his Mom who was his living donor, so that was great. They were very kind and generous with their answers and I have their contact info if we think of anything else to ask them. The patient is younger than Katie (only 7) and a boy, but it was still great. I do however want to get serious about trying to reach some of her friends from camp kydnie. Email hasn't worked so I'll be making some phone calls tomorrow.

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

Good News!

Small piece of news before we move to the big news... we found out last week that Katie's creatinine was back down to 4.6 and that made her happy, but it wasn't a dramatic enough drop to cause any change to our course.

We were out of town for the weekend and came home to a message from one of the donor coordinators that my blood work results were back. So I spent all day today trying to get in touch with her and finally succeeded at around 4pm this afternoon. The news is ALL good: we have the same blood type, our bloods mixed together well, and the cross match came back with a 4 out of 6 match. Typically parents are a 3 out of 6 match to their children, so we're better than average. So we have the go ahead to continue with the rest of my workup.

The timing ended up working out very well because we see Dr. Mendley tomorrow. Katie and I need to have blood drawn and having it drawn at the hospital is just a little better than an outside lab. They apparently have to take quite a bit from me but the donor coordinator says I will be able to go on living after the volume they're going to take.. seriously, that's what she said. Katie just needs one vial drawn and it is for UNOS purposes (United Network for Organ Sharing). They are ready to list Katie on the UNOS list so that her time could start running if she should need a cadaveric kidney. Your position on the UNOS list for a kidney transplant is completely based on the length of time you have been on the list so just in case a family or friend donor doesn't work out they want to list her now. UNOS requires monthly blood work so this will be the start of that, and we will do that until her surgery is done.

So, you may be wondering where we go from here. I have to have a full medical workup to make sure I'm healthy enough for surgery. On Thursday, September 18th I will spend the day at the hospital. I meet with a bunch of people, a social worker, the donor coordinator, the donor surgeon, and an adult nephrologist. And I have several tests, an EKG, a chest x-ray, and what's called a CT angiogram which is a specialized CT scan done with contrast so they can see how my renal anatomy is layed out. As long as there aren't any problems with any of those results we go forward.

Katie also has to have more testing done which we hope to start scheduling tomorrow, she also will need an EKG and an echocardiogram. She has to see her pediatrician for a tetanus shot, and she needs a renal ultrasound and a visit with her regular surgeon.

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

Next Blood Draw

We finally heard back from Dr. Mendley's nurse today. Katie doesn't need to have her blood drawn again until the week before we see Dr. Mendley again. That appointment is on September 9th so we'll take her Tuesday the 2nd for that blood draw. By then it will have been 5 weeks since I had my blood drawn for the typing and tissue matching, hopefully we'll hear by then if I'm a match or not.

Grandma also had her blood drawn a week or so ago, and today we had a packet sent out to Aunt Maryann. Uncle Ricky found out he has to have his gall bladder removed so he's not going to be able to be considered as a donor.

Even if we run out of family, lots of people at our church have offered to be tested as well as some people that I work with so we'll find a kidney somewhere.

HI

hi its me katie/transplant girl i really am not happy about my lab results but i had alot of blood taken about 10 tubes. also i love getting emails or cards so if you want to ask my mom (amy in baltimore) for the info.

Lab results

As you may recall Dr. Mendley wanted labs drawn again on Monday 8/11. Since we were at the hospital we had transplant services draw them. And as we were instructed before I called yesterday to get the results. I heard back from Nancy today and Katie's creatinine is back up to 4.9. I know that we all were secretly hoping that it would go down to 4.0 so that we could maybe stall the transplant process, but it seems that that isn't going to happen.

Evaluation Day

So today was our transplant evaluation. We arrived at transplant services at 7:45 a.m. and we left from there at 3:00 p.m. Obviously it was a long day. We had been told that it is a shorter day for peds patients, but it didn't end up working out that way.

First we saw a video and slide presentation. The video was about the benefits of transplant, mostly discussing how much improved someone's life can be after a transplant, mostly if you have been on dialysis. They also discussed how important the post transplant medications are, but we already knew we would just be trading one set of medicines for another. And I've already told Katie that the number one cause of organ transplant failure is noncompliance with medications.

Then we saw the financial coordinator. There was a bit of drama over how our referral was worded but that got worked out before we left.

One of the nurse coordinators for the transplant service reviewed the questionnaire that we had answered for Katie.

We also were visited by both of the living donor coordinators. They told us that Steve can’t be considered as a donor because he is under 50 and has high blood pressure. It sounds like a strange rule and I’m not sure I understand but if he was over 50 and had high blood pressure under good control, then he could be considered. They had me fill out some information, and then later went over that with me. As I expected there was a lot of concern over the medicine that I take that is used to treat diabetes. I’m not diabetic and my blood work will bear that out, I’m taking that med for a different reason.

Then we had lunch, I’d like to say it was yummy but it was at the hospital cafeteria, so… not so much.

After lunch we saw the dietician. She really didn’t have any information for us, she took information from us, and was pretty pleased with what Katie gave her as her typical diet. I’m not exactly sure what her role is, but I suspect they see a lot of diabetic patients, and those who are less diet conscious than we are, so maybe they need more assistance.

Then we met with the social worker, again, I’m not exactly sure what her role is. She said she could help coordinate school issues but we have to get any “orders” from Dr. Mendley. I doubt that I’ll need her because I’m used to working with the schools, but we’ll hang onto her information. Both she and the dietician were very nice, and very knowledgeable, and not thrown by Katie’s non-kidney uniqueness.

Finally, we met with Dr. Eugene Schweitzer the surgeon. He was… ummm… different LOL, and not what I expected, but very nice. He didn’t really say much. He looked at Katie’s abdomen, and he checked her pelvic and ankle pulses because the blood source for the new kidney will come from the main arteries and veins serving her leg (on which ever side the new kidney is placed.) He seemed to say that he doesn’t actually do the surgery, that he just directs the pediatric surgeons, but Dr. Voigt (her urologist/surgeon) seemed to say that he would “be in the operating room.” I’m sure that will all get worked out.

And even though those things could have been accomplished in just a few hours, instead they took 7 hours.

So, what’s next. We’re not completely sure. The transplant center doesn’t deal with pediatric patients that often so they’re quite bewildered and “off set” when they have one. But they seemed to think that we should be moving forward with Katie’s work up. However, I think Nancy intended for us to wait until a donor is chosen. We’re now less than a month from our next appointment with Dr. Mendley which is when Nancy wanted to move on with the rest of Katie’s work up, so I’m not sure a donor will be chosen by then. We were told today that the first round of donor testing (blood work) takes at least a month (Nancy had said 2-3 weeks), my blood was drawn today so that clock is ticking for me now. My Mom has asked to be considered next, her questionnaire has been completed, and we hope to get her blood drawn in the next week or so.

I’m going to call Nancy tomorrow and discuss a few things:

1. That my Mom will be the second donor considered and not Steve, or my brother as I had told the social worker.
2. That we will need some help with school because we’re not sure Katie can make it through a whole school day.
3. And to see if she’s willing to schedule some of the rest of Katie’s workup now so that we can get rolling.

Any questions? I’ll do my best to answer them. You can post them here or email me at steamy2@comcast.net, if you want to reach Katie I’ll forward your mail to her, I just don’t want to post it here.

7/30/08

Katie had blood drawn on Monday (7/28) and we were to call today for the results and to see when we need to have blood drawn again. The good news is that her creatinine went down to 4.45, that's awesome! She wants the labs drawn again in 2 weeks. Katie will be glad to hear that she doesn't have to get it drawn again next week.

I also asked Nancy (coordinator from the peds nephrology side) how long the dental clearance for is good for since Katie already has a dentist appointment set up for 8/9 and she said it's good for a year so she's faxing that to Steve and that will be one big check mark on the list of things that need to get done.

Finally, right before I spoke to Nancy the transplant services secretary called and asked all kinds of questions that that hospital already knows, and that frustrates me. She wanted Katie's DOB, insurance information, height, weight, race, etc. It's frustrating to me that they don't seem to have access to her complicated medical history. So the most recent addition to the list of questions for 8/11 is "How will there be continuity of care when your data system doesn't seem to be connected to that of her other specialists even though you are all in the same facility?"

Sunday, July 27, 2008

We went to church today and announced to our church family (those who hadn't heard) that we're heading toward transplant. It was a little emotional, and it brought to mind again the fact that a lot of people think that a transplant is a cure for all of Katie's kidney issues, and it just isn't, it's just another treatment for her kidney issues. We're going to trade one set of diet restrictions for another, and one set of medicines for another.

Also today Katie thought of a question we need to ask at our first appointment. She wants to know if I or her Dad are her donor will we be able to recuperate in the same hospital room. That's a good question, and one that had passed through my mind but then I had forgotten. I'll add it to the list in our doctor's appointment notebook.

Ask away...

I forgot to add, please feel free to ask any questions you may have, we really don't mind answering questions. You can simply comment here on the blog and I'll get back to you.

Beginnings

Katie’s only kidney never worked as well as a healthy kidney. We knew that very early on, but there were other medical issues that had to be managed and at the time, the kidney was low on the list. However, at some point that neither her Dad or I can remember, she had a bladder infection, during that infection bacteria made it up into her kidney and we were introduced to the pediatric nephrology department, and Dr. Susan Mendley. I think it was sometime during 2005 or 2006 that we finally got the official “chronic renal failure” diagnosis. So our journey to kidney transplant began the day she was born, but it began in earnest recently.

7/14/08: Just another blood draw for another nephrology check up, nothing out of the ordinary.

7/15/08: After years of keeping Katie’s kidney function in a workable range of 1.9 to 3.6, we got a phone call that it has risen to 5.4. The nurse who called said they wanted Katie to drink 3-4 liters of fluids a day and for us to redraw the labs on 7/19. Those results would be available by our checkup appointment on 7/22. The nurse, talking to us on behalf of Dr. M, seemed to indicate that maybe Katie had gotten dehydrated. I agreed that that was very possible since she has been in camps for the past two weeks, so was spending more time outdoors. And I admitted we had skipped a cathing there or there which I really knew was a problem, but sometimes you have to balance having a kid and having a kid with medical issues.

Links of interest: Creatinine http://en.wikipedia.org/wiki/Creatinine
Renal failure http://en.wikipedia.org/wiki/Renal_failure
Cathing http://www.healthcare.uiowa.edu/cdd/patients/cic.asp#basics

7/22/08: We arrived at our checkup hoping for good news. After waiting in the waiting room for way too long we were greeted by a resident. Since our hospital (UMMS: University of Maryland Medical Center) is a teaching hospital we’re used to this. He had the labs with him so as soon as I answered a few of his questions, I asked him about her creatinine … it was 5.17, and her BUN was 53!!!. When Dr. Mendley came in, she went through the preliminiaries and then she said “well we’ve been discussing when we would begin talking about transplant, and now we are there.” The said for us to contact Dr. Schweitzer since he does the pediatric transplant evaluations, and they would notify Dr. Voigt (our surgeon who has taken Katie ot the OR 20 times), and she called Nancy (the nurse) as we will apparently become quite well acquainted. Things became a bit of a blur. I know that I asked if there was any chance the creatinine would come down causing the process toward transplant to be slowed, and she said maybe if it came down to 4 she might stall it slightly, but she clearly wasn’t expecting that to happen. She and Nancy told me to be sure to tell Dr. Schweitzer’s office that I needed a pediatric evaluation, and this appointment would be an all day affair, we should bring any living donor possibilities with us, there’s lots of testing for Katie and for any living donor possibilities. Katie would need an EKG and an echocardiogram and that can’t be done through transplant services because they only scheduled those for their adult patients, Katie’s would have to be done through pediatric cardiology. I mentioned that I am likely to be the donor, this seemed to please them. We were given a standing lab order for weekly labs, but told that we may not need them every week but that for a while we would. We were to having the next blood draw on 7/28 and call two days later to find out when the next draw should take place. Nancy talked some more about the rest of the team that we would be introduced to at our first appointment, a social worker, a financial planner, a dietician, an transplant nurse. And finally, we were scheduled for our next appointment with Dr. Mendley in 6 weeks on September 9th.

Links of interest: BUN http://en.wikipedia.org/wiki/Blood_urea_nitrogen

7/23/08: I called to schedule the appointment with Dr. Schweitzer for 8/11, the person I spoke to could only give me a day, not a time, someone else would call me with a time.

7/24/08: I received a strange call from transplant services, they asked for Katie, and wanted to “put her in their system.” I explained she should be in the UMMS system. Then she asked a few strange questions, and said that she wasn’t sure what time we should come because kids don’t come at the same time as other patients. And she asked if we knew we would only be seeing the doctor not the rest of the team.
I emailed Nancy, the phone call seemed odd, and I still didn’t have a time, and I got confused and thought maybe I was supposed to be scheduling something else, like the cardiology tests.
She called back and I had a long conversation with her. The appointment on 8/11 should look like this:

Arrive between 7:30 and 8am, maybe see the financial person before 8:30 maybe not
8:30 – 9:30 there is a presentation, we think a video, that discusses the procedure, the post transplant meds, the blood draws, etc.
Then we will meet with the following:
Transplant nurse (this will likely include the first blood draw for Katie, Steve and I)
Social worker
Financial person if we didn’t already meet her
We will meet with a living donor coordinator

Nancy went on to say that the initial round of donor testing takes 2-3 weeks to come back. She also mentioned that she had seen in an old discharge note of Katie’s that I was taking an antidiabetic medication, so I explained that my medical history has some possible reasons for me to be excluded but so does Steve’s as he has a history of kidney stones. So she suggested that we have us both evaluated until the team excludes one or both of us. I asked her what kind of time frame we were talking about here, she said the quickest she has seen it happen is about 3 months, she thinks we’ll be looking at November or December. When we see Dr. Mendley again she’s hoping the team has decided on a donor, and we will get some things and more info from Nancy:
· Order for chest x-ray for Katie which we can have done that day if we choose (and
we likely will).
· Order for dental clearance (luckily Katie already has a dental appointment that week.)
· Nancy will need a copy of Katie’s immunization record, and she will need a current (within
a year) tetanus shot that should be done through her primary care doctor.
· She will also need a TB test, which again should be done through primary care.
· At that time we will receive the order and phone number to schedule the EKG and the
echo.
· She will also need to see Dr. Voigt, and have a renal ultrasound so we’ll work on getting
that set up after the 9/9 appointment too.

And so our journey, in earnest, has begun, I will make every effort to keep this blog as updated as possible.