Today was a very long day at the hospital, 9 hours! He received a test dose of bulsulfan which can cause seizures so as a precaution they administered zofran for nausea and ativan, an anti-anxiety drug to prevent seizures. Connor noticed the effects right away and said that he doesn't feel "right" that he feels like something different is happening and then he started slurring his speech and just acting very goofy- it was really funny. The nurses warned us that as the ativan leaves the body that some kids get angry or will cry uncontrollably, they expected that to happen at 4 or 5 pm. It finally hit at around 10 pm when Connor was just so homesick and cried himself to sleep. He first was trying to hold back his tears due ot our bet and then he just kept talking about how he missed home and he started pouting more and I told him that it was OK to be sad and to cry, that we know that he misses home. And then he said I can't cry b/c of the bet and I told him that he can get a pass and we finally negotiated to 10 passess while he wept his heart out. He is now trying to work up to 20 passes :)
He doesn't have much of an appetite today - but no mouth sores or nausea. He hates taking the oral medicine at home but he is tolerating that OK too.
Thanks for your prayers and comments.
3 comments:
Connor you are the bravest guy I know. Always thinking of you ....
Nanny
Praying for Connor every day.
Hi Steph,
We have never met, but I heard about your son thru A3M a couple years ago and recently found ur blog thru Joe/Andrew's blog. My son recently went thru BMT. He was diagnosed with an immune deficiency disorder when he was 2 months old. Though it's not the same one as Connor's, it's similar in that my son has a defective immune system. We are at day + 93 post transplant. I will be praying for Connor and your family as you go thru the pretransplant regimen. It can be so tough in so many ways. Hang in there...
Alice
Post a Comment