We were also reassured that if treating it with medication does not seem to work, there is yet something more that can be done surgically to help his brain gain more room that is not as risky as his previous procedures. Time will tell and Kelptyn will continue to be our leading star. So Kelptyn will say "bu bye" and walk out of the hospital to go home today. And we'll follow him out once more as he teaches us what it means to carry on.
It's been an interesting past 6 days. Early Sunday morning the tough guy flying was quickly grounded and screaming through severe head pain as his eyes bulged once again. Kelptyn's BMT doctor was a hero as usual and admitted Kelptyn to the hospital to give him pain meds right away. I'm not sure anyone can fully explain why Kelptyn's body had yet another ICP episode, but today he is seeming more like himself on a higher/stronger steroid dose. This is not a long term solution, but we've had many experts weigh in this week on his case and we have decided to continue with an extremely slow steroid wean to see if it buys Kelptyn enough time to get through his rapid brain growth period (maybe that's why they call it the "Terrrible Twos") and give his skull some time to catch up as he remodels bone.
We were also reassured that if treating it with medication does not seem to work, there is yet something more that can be done surgically to help his brain gain more room that is not as risky as his previous procedures. Time will tell and Kelptyn will continue to be our leading star. So Kelptyn will say "bu bye" and walk out of the hospital to go home today. And we'll follow him out once more as he teaches us what it means to carry on.
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The first week of summer has been a blast. Kelptyn didn't have to visit any doctors for a whole week! If all goes well, he won't see one until next Friday. And things have been going oh so well. We haven't seen Kelptyn THIS happy for quite some time. This week we had a lovely Father's day at home, picnicked at the beach, played at the park, visited Papa at Sea World, went to Rockin' Toddler time, and walked to the beach a couple times to get sand in our toes. Kelptyn's rash is looking better and his chimerism shows 86% Tcells, 0% Mcells from last Friday's blood draw. It has been 6 weeks since his most recent surgery and we are hoping for 6 more weeks just like this one. He is unstoppable and keeping us very busy as a toddler should. Keep flying Kelptyn. |
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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