Tough Day, Tough Boy

It was a long day yesterday-one of the longest we have had besides surgery, but Connor was amazing for us! He had a really hard time with the infusion today...once it started running the most dangerous part is the first 30-60 minutes. He was so tired that we laid down together on the tiny cot in our tiny room...and 45 min. into it-Sam sees large spots popping up everywhere on Connor-raging hives.

The nurses shut off the machine and paged the doctor for what meds to start giving (ended up being more Benedryl, more Hydro-cortisone, and Solumendol)...the doctor comes and looks concerned, but decides to restart it after a 30 min break and the hives cooling down and at a slower rate...fast forward another hour and it is shut off again-this time for blood pressure problems...another cool down and then we finally finish. Then we stayed a while to make sure he was okay to leave. Whew!

He probably had his vitals signs taken over 25 times! At least they keep a very close eye on him. But he can't stand to be touched so it was hard to see him so upset ALL day...

Thanks for all the well wishes-we go back next Thursday to do this all over again, so keep em comin! Thanks to Holly for calling to check on us and Aunt Laurie for helping out with Samantha & Belle. This would be even more difficult without all the love and support.

Today Connor missed playgroup and just had a kind of relaxing day. Did us all good!
We are still waiting on a plan of action for the Decadron-How to administer, when, and how much...should figure it out by next week I hope-especially since Connor is starting to have more symptoms lately.

God Bless,
Debbie