Tuesday, February 16, 2010
New year and healthier in lots of ways but...
I'm so grateful for who Katie is able to be now because of the transplant and for those reasons I try not to lament the problems that have come with it. We are still battling just about back to back bacterial urinary infections. We decided, with the medical team, not to treat them until she becomes symptomatic but that has eventually happened with the last two infections. Once she's symptomatic it stinks and of course takes longer to get better. I'm starting to think that we need to go back to treating her every time there's an overgrowth of bacteria instead of waiting until there are symptoms. Don't get me wrong, her symptoms are no where near what they could be, mostly pain and just feeling badly. I just don't know how we get out of this cycle. One of the thoughts I had way back during all the hospitalizations was to decreased her immunosuppression (IS) to try to reach a happy medium where she wouldn't reject the kidney but could fight these infections. However, that seems like it won't work. The level of one of her IS meds has been running very low, we've been increasing it to try to get it back to where they want it so it's been decreased without us trying. The other one has also been decreased twice since November so there's really nowhere to go with that one either... I just don't know what else we can or should do.
Sunday, December 20, 2009
Bad blogger!
My apologies for being a bad blogger. Time has just gotten away from me. I even let our big anniversary go by without a post! We're past the 1 year mark, can you believe it!!!
Back in November we saw the new peds nephrologist at UMMS, Dr. J. She is lovely and we really appreciate some of the different perspectives on peds renal care that she is bringing to the table. At the time when we saw her Katie was showing as having a large amount of bacteria in her urine, however, Dr. J has seen this in her bladder compromised renal transplant patients and said that at some point we'll probably have to stop treating them and consider it to be a colonization rather than an infection. This is one of the things I had been saying since we had gotten to that same point with urology before we got to the point of transplant. Dr. J and I discussed it and Katie's nonexistent symptoms of infection and decided there was no time like the present and we're not treating these over growths of bacteria unless she becomes symptomatic. Two other big changes took place in November as a result of labs as well. Katie's white blood cell count is too low (another clue we have that this over growth of bacteria isn't an infection) and this is likely due to some of her medication. So she was taken off of one of the meds for the EBV mismatch. Also we discontinued her prophylactic antibiotic since that seems useless. Finally, we reduced one of her anti-rejection meds (Cellcept). The other change was that we are now only doing labs once a month, that's a huge plus for Katie.
This month's round of labs has brought more changes. Her renal function is still steady as a rock so that's good news. However, her white blood cell count is still too low. We have reduced the Cellcept even more starting this week and have had to go up on her other anti-rejection med (Prograf) because that level was a little low, not too terribly just a little. She still has that over growth of bacteria in her urine but still shows no signs of infection. They do want to repeat her labs in 2 weeks but we'll be off for winter break so it will be a little easier to get that done. The stinky part is that in order to get a Prograf level we have to get up and to the lab early in the morning.
With the med changes over the past two months her med list is now down to 1/2 page! I can't remember the last time it was this short. It's almost memorizable again.
School has also seen some big changes for Katie as well. She seems to be making more and more friends everywhere she goes these days. She had her tri-annual IEP testing in the last few months and has been released from her IEP. We will move her accommodations over to what's called a 504 plan so she will still have things like her water bottle needs to be with her and extended time for assignments and such but this change paves the way for us to move her out of her current classes. Since she began with her IEP she has had to be in classes where there is additional adult support. These classes have tended to have more behavior issues as well as the additional learning issues and the behavior issues have been very distracting for Katie. We're hoping that soon after the new year she can move into a different team of teachers and transition into classes where the learning is more important to the students than in some of her classes now.
Thanks for your continued support and prayers!
Back in November we saw the new peds nephrologist at UMMS, Dr. J. She is lovely and we really appreciate some of the different perspectives on peds renal care that she is bringing to the table. At the time when we saw her Katie was showing as having a large amount of bacteria in her urine, however, Dr. J has seen this in her bladder compromised renal transplant patients and said that at some point we'll probably have to stop treating them and consider it to be a colonization rather than an infection. This is one of the things I had been saying since we had gotten to that same point with urology before we got to the point of transplant. Dr. J and I discussed it and Katie's nonexistent symptoms of infection and decided there was no time like the present and we're not treating these over growths of bacteria unless she becomes symptomatic. Two other big changes took place in November as a result of labs as well. Katie's white blood cell count is too low (another clue we have that this over growth of bacteria isn't an infection) and this is likely due to some of her medication. So she was taken off of one of the meds for the EBV mismatch. Also we discontinued her prophylactic antibiotic since that seems useless. Finally, we reduced one of her anti-rejection meds (Cellcept). The other change was that we are now only doing labs once a month, that's a huge plus for Katie.
This month's round of labs has brought more changes. Her renal function is still steady as a rock so that's good news. However, her white blood cell count is still too low. We have reduced the Cellcept even more starting this week and have had to go up on her other anti-rejection med (Prograf) because that level was a little low, not too terribly just a little. She still has that over growth of bacteria in her urine but still shows no signs of infection. They do want to repeat her labs in 2 weeks but we'll be off for winter break so it will be a little easier to get that done. The stinky part is that in order to get a Prograf level we have to get up and to the lab early in the morning.
With the med changes over the past two months her med list is now down to 1/2 page! I can't remember the last time it was this short. It's almost memorizable again.
School has also seen some big changes for Katie as well. She seems to be making more and more friends everywhere she goes these days. She had her tri-annual IEP testing in the last few months and has been released from her IEP. We will move her accommodations over to what's called a 504 plan so she will still have things like her water bottle needs to be with her and extended time for assignments and such but this change paves the way for us to move her out of her current classes. Since she began with her IEP she has had to be in classes where there is additional adult support. These classes have tended to have more behavior issues as well as the additional learning issues and the behavior issues have been very distracting for Katie. We're hoping that soon after the new year she can move into a different team of teachers and transition into classes where the learning is more important to the students than in some of her classes now.
Thanks for your continued support and prayers!
Sunday, October 18, 2009
She's 12!!
We had the big birthday around here this past Friday and my babies are now 12.
On the health front Katie is doing well. She does actually have a UTI right now that we are treating. I'm a little concerned that we're into another string of UTIs. We have been considering switching her renal care over to Johns Hopkins. When we met with them they did say they have experience with transplant patients who have augmented bladders like Katie who have had recurrent infections. They have had to do some altering of meds or other things to get the infections to stop. However, if we do that we'd have to have appointments in the middle of the day (no mornings or afternoons until January) and school make up work is a big issue we're dealing with right now. So, we're not sure what to do at this point. It seems like missing a day a month shouldn't be a big deal and missing a day a month shouldn't be what makes us stay away from care that might know more about Katie's uniqueness but it just all has to be considered.
We are less than 30 days from the year anniversary of the transplant...
On the health front Katie is doing well. She does actually have a UTI right now that we are treating. I'm a little concerned that we're into another string of UTIs. We have been considering switching her renal care over to Johns Hopkins. When we met with them they did say they have experience with transplant patients who have augmented bladders like Katie who have had recurrent infections. They have had to do some altering of meds or other things to get the infections to stop. However, if we do that we'd have to have appointments in the middle of the day (no mornings or afternoons until January) and school make up work is a big issue we're dealing with right now. So, we're not sure what to do at this point. It seems like missing a day a month shouldn't be a big deal and missing a day a month shouldn't be what makes us stay away from care that might know more about Katie's uniqueness but it just all has to be considered.
We are less than 30 days from the year anniversary of the transplant...
Tuesday, August 25, 2009
Update
Sorry for the time between posts. Katie has labs every 2 weeks now. She had them on Friday 8/21 and we got the results today. Her Prograf level of low, it's 3.3 and the goal is between 5 and 8. I'm concerned about this because of the Prograf side effects and that Prograf is actually neprho toxic and we've already been through a Prograf toxicity that caused a biopsy. The biggest visible side effect is hand tremors which Katie struggled badly with immediately after the transplant. Every time we go up a dose the tremors get worse and with school starting this will be more of an issue. We'll discuss this with Dr. M when we see her next week and it will definitely be a point of discussion with Dr. N when we see her (that's the Hopkins doc we'll be seeing at the end of September.) Katie's creatinine is 0.8 which is great! Her white blood cell count is coming down. It's not too low yet and could just be a sign that we're not dealing with any level of infection, but if it goes too low they might have to adjust her dose of CellCept, one of the other immunosuppressive drugs she's on, since that's a known side effect of it. This is all quite the balancing act. As we get further out from the transplant the Prograf goal will lower and it's already lower because she received a living related donation.
So that's where we are. School starts next week and we're all hoping for a great year for Katie with no hospitalizations.
So that's where we are. School starts next week and we're all hoping for a great year for Katie with no hospitalizations.
Wednesday, July 29, 2009
Still doing well
Katie had another set of labs with urine culture on 7/24 and that culture result was no growth. It was at LabCorp and we know their threshhold is different than the lab at UMMS but it's still good.
Her Prograf level is giving us a bit of a problem so we're upping her dose and redoing labs this week again.
The orthopod said that he felt her back pain wasn't a result of scoliosis or kyphosis and that both are out of the treatment eligible range. He feels that her muscles are week and tight from lack of use from being sick and sedate for so long. He prescribed physical therapy. She had her first appointment yesterday and the physical therapist came to the same conclusions without knowing exactly which muscle groups the orthopod had named so that was comforting. Katie has exercises to do and will be going to therapy a couple of times a week for a month or so then we will reassess.
We stopped by the middle school today to give the nurse Katie's new PE restrictions which are tremendously lightened compared to her return to school last year, and much better than "no PE" which is where we were before the transplant.
Her Prograf level is giving us a bit of a problem so we're upping her dose and redoing labs this week again.
The orthopod said that he felt her back pain wasn't a result of scoliosis or kyphosis and that both are out of the treatment eligible range. He feels that her muscles are week and tight from lack of use from being sick and sedate for so long. He prescribed physical therapy. She had her first appointment yesterday and the physical therapist came to the same conclusions without knowing exactly which muscle groups the orthopod had named so that was comforting. Katie has exercises to do and will be going to therapy a couple of times a week for a month or so then we will reassess.
We stopped by the middle school today to give the nurse Katie's new PE restrictions which are tremendously lightened compared to her return to school last year, and much better than "no PE" which is where we were before the transplant.
Saturday, July 18, 2009
Update
I thought I should throw out an update for everyone. We had labs with a urine culture on 7/15 and saw Dr. M on 7/16. There is bacteria in the urine but it's at a low concentration so we're not going to treat it. Dr. M said of her patients who have had problems with UTIs after transplant it usually settles down after a while and the sometimes flares back up again later. I kind of wish she would have said she's been through this before with patients instead of us thinking this was based solely on Katie's unique anatomy... All of her other levels look good. She's down to one small dosage of one blood pressure medication which is a good thing.
On Monday we're off to see the peds orthopod doctor at Hopkins to discuss the scoliosis and kyphosis. And we finally got the appointment to see the peds nephrologist we want to see at Hopkins but it's not until September.
We have labs again on Friday 7/24 and then we're going camping as a family for the very first time, should be lots of fun!
On Monday we're off to see the peds orthopod doctor at Hopkins to discuss the scoliosis and kyphosis. And we finally got the appointment to see the peds nephrologist we want to see at Hopkins but it's not until September.
We have labs again on Friday 7/24 and then we're going camping as a family for the very first time, should be lots of fun!
Wednesday, July 1, 2009
Take 2!!
It turns out we did get from there to camp without another UTI. That result reported below was actually from the stool culture we dropped off (we're trying to get Katie cleared from the contact precautions she's been on since February during every admission and that is done through stool cultures) and NOT the urine. The urine in fact came back as NO GROWTH!! That means there is NO bacterial growing in her urine! This is the first time that a UMMS sample has come back no growth since before the transplant!
How did this come about you ask? Well, Katie started having an icky side effect from the penicillin, and since it was amoxicillin that caused an over growth of something called Colostrum Difficile (C-Diff for short) and both are in the cillin family I called to see if we could reduce her dose or something. Well while looking at the report again, Dr. M's nurse realized the mistake. So we have stopped the penicillin, we're treating her bowel flora for the imbalance caused and...
WE ARE INFECTION FREE!!
How you ask when the stool culture did come back with a result... well all it said was "abundant growth" not a quantitative amount and with Katie's anatomy there's bound to be odd stuff in her system, as long as it's not too much, or causing symptoms, we are good to go!!
And finally!! that stool culture result was the 3rd out of 3 that we needed so, in the event we need to be inpatient again, Katie is free of the contact precautions!!
Tears of joy!
How did this come about you ask? Well, Katie started having an icky side effect from the penicillin, and since it was amoxicillin that caused an over growth of something called Colostrum Difficile (C-Diff for short) and both are in the cillin family I called to see if we could reduce her dose or something. Well while looking at the report again, Dr. M's nurse realized the mistake. So we have stopped the penicillin, we're treating her bowel flora for the imbalance caused and...
WE ARE INFECTION FREE!!
How you ask when the stool culture did come back with a result... well all it said was "abundant growth" not a quantitative amount and with Katie's anatomy there's bound to be odd stuff in her system, as long as it's not too much, or causing symptoms, we are good to go!!
And finally!! that stool culture result was the 3rd out of 3 that we needed so, in the event we need to be inpatient again, Katie is free of the contact precautions!!
Tears of joy!
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