Kelptyn's doing better with some of the medication changes, so he was able to come home today!
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Kelptyn had some brain swelling starting Friday night so we visited the ER yesterday morning and he was admitted to the hospital again. We believe that his brain swelling this time is a sidekick from his crazy blood pressure medications he is on, but it's still too soon to know for sure. So the doctors are making some med changes. After screaming and fussing for 11 hours because his head was bulging, he was very quick to respond to a high dose steroid and was up to play again within an hour. Kelptyn can turn corners very rapidly and it's a blessing that his young mind forgets about these obstacles as he continues on his journey.
“The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.” ~Ben Okri~ Kelptyn's been given the okay to go home. His blood pressure is still high (probably from the high dose steroids), but we will continue to adjust his 3 blood pressure medications and visit the hospital clinic. Kelptyn's pee has shown a little less protein lately so we are holding off on the kidney biopsy and will monitor it for awhile to see if things improve. We are looking forward to taking Kelptyn home!
Kelptyn is still residing at our "time share" aka Rady Children's Hospital. We now have yet another speciality on board. The Renal team (kidneys). Yes, apparently it's the Renal docs that monitor blood pressure not the cardiologists which are also following Kelptyn closely. Kelptyn's blood pressure has set some all time highs during this hospital stay and so we are trying different medications to get it under control. He's been performing in the 140s/90s while medicated, not so good for a baby. The doctors are continuing to monitor Kelptyn's pee pee. Yep, I guess his kidneys haven't been properly filtering protein so that's showing up in his pee. So the doctors may be more than likely performing a biopsy on one of his two kidneys this coming Thursday. We won't be going home before his biopsy more than likely. On another note, Kelptyn's BMT doctor does not have a solid long term care plan at this point in time. It's been a lot of back-n-forth, hmm and ha-ing around here, since Kelptyn's body has been a bit of a mystery to all. We have already worked through a Plan A, Plan B, and Plan C. We are watching him day-by-day, week-by-week, and waiting to see what his body does. We hope to see his body find a stable system...meaning...decent blood pressure, better control over his GVHD symptoms, no more PTLD, and hopefully he can continue to hold on to some donor osteoclasts in his blood (we can't quite measure this exactly, just watch him for symptoms). Maybe more donor lymphocytes down the road, maybe a transplant, maybe not. Time will tell. Kelptyn however has been more than joyful. He is feeling loads better now that his body is not in respiratory distress and he doesn't have to where oxygen. He lives in the moment fully and we play hard right there with him. Below is a quick before picture and after video for this hospital trip. He gets knocked down, but he gets up again! Bravest, Toughest, Strongest, Little Pirate Ding Dong Video
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AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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