Wednesday, May 16, 2012
The LAST IVIG?!?!?!?
Gosh we have been looking forward to this day for what seems like forever. Sammy however is not happy to be done! I can't get over it really. I think he has connected the pieces that he feels better after IVIG and wonders how he will feel during the trial off... We trialed him off a couple years ago and it didn't go very well. But we are going to try again, well that was the plan prior to the fiasco of today.
So last month when we came in for IVIG it took 113 attempts to get the IV in!!! It was absolutely horrible. He was such a trooper about it though. Anyways I have thought about that often in the last month leading up until today. And so I have been praying that God would get the IV in smoothly and that is exactly what He did! The nurse got the IV in on the first attemp! So that was fantastic. And it was funny because Sam told Justine the nurse EXACTLY where he wanted her to put the IV in and she did:-) BUT then things started to go down hill...
First we had to wait FOREVER to start it because the unti was incredibly busy. Then when we finally started it about forty minutes into it Sam had a reaction. It was so scary, all of his vital signs were affected. His heart was racing, his blood pressure and temp went up, his respiratory rate went up, he got splotchy all over his chest and his arms became mottled. It was terrible. And because of the bleeding disorder he couldn't have benadryl so we just had to wait it out. It took nearly four hours for him to stabilize. Once he finally got back to his baseline we got to go home, but by then it was after midnight. I am so thankful that my friend Sara came with us. It was such a blessing to have her there. PReston was intermittently crabby, and so it was nice to not have to take care of them both alone.
I still haven't heard back from his immunologist about what the plan will be now. SO I am hoping to hear tomorrow what he thinks we should do now. I am hoping he is still willing to go ahead with the trial off.....
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