Still doing well

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

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

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

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

Update

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

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

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

Take 2!!

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

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

WE ARE INFECTION FREE!!

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

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

Tears of joy!