Everyone home now after 7 more nights in the hospital. Scott is streched out on his bed, commenting how comfy it is. He was a bit worried about taking his 6mp tonight, as we had it in new liquid form, from a compounding pharmacy here in Brandon (who is luckily covered by our insurance). After he took it, he said it had little taste to it, and he settled down greatly. Finally relaxed for the first time in about 10 days.
Today marked the beginning of week 11 of his treatment, or day 71. A total of 27 nights in the clink so far. One nasty big yellow bag left 2 weeks from now. He's gotten through 5 of 20 rounds of Elspar shots in his legs. I was just looking through the complete treatment protocol, and things become "weekly" if we can get through this next scheduled hospital stay.
Stephanie has just collapsed into our bed. Hopefully she gets a full night sleep. She spends every moment at the hospital (and won't have it any other way). The nurses actually tell her it is like having an extra hand, as she does many of the things they tend to do for most kids. I don't know how some people leave their kids there alone, but it happens more than I care to think.
So we've made it 10 weeks into this nightmare. We've learned a lot, yet have a lot more to learn. Scott's endured an incredible amount, yet still has an incredible amount to endure. He's went to sleep in a good mood, as he realized he will have an entire week away from the hospital AND clinic completely. He needs that. His body needs it.
If anyone is interested, I've obtained an electronic version of his entire treatment protocal as a .pdf file. Just email me and I can email a copy to you.
Off to bed for me now too. 3 days off for me. 4 off for Derry. And hopefully a nice quiet week for Stephanie and Scott.
Scott & Sunny
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1 comment:
I hope you all had a peaceful weekend and a lovely Easter complete with a traditional Easter Fruit Loops feast. : )
Lots of love to you all.
xxxx
S.
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