Let me begin by saying that we all survived today. That’s the long and short of it. We survived.
Gavin’s IVIG Infusion did finally happen this afternoon. The meds didn’t arrive until almost 1 pm and so by the time we got him prepped, it was time to pick up the boys from school.
This infusion didn’t go so well for Gavin. His body really seemed to struggle this time and he went into a moderate Autonomic Crisis.
The transient rash (which is only possible during a crisis) appeared about 3 times during the infusion. He began to sweat and became disoriented. He wasn’t able to tell me where he was or what day it is. That’s not a good thing. (The picture below shows the rash)
For some reason this process seemed to take so much longer than normal but I guess it lasted about 2 hours or so.
Gavin did eventually stabilize but this was really concerning for me.
I thinking that we have have to give him Ativan prior to these infusions in the future. The Ativan would supress his nervous system and in theory, reduce the chances of him going into a crisis.
On Monday I will have to call the Cleveland Clinic and speak with the Autonomic specialist and get his thoughts. For the record, Ativan is the only drug known to help reduce or prevent a crisis of this nature.
The rest of the day was really difficult.
Lizze is having a really, really rough time right now and so she spent most of the day in bed trying to rest.
The stress of the day had us at odds for a little while but we got everything worked out.
I can’t really explain how much stress I’m feeling over everything going on in our lives right now. So very little is within my control and that’s a really helpless feeling for me.
To be completely honest, I’m having a rough time sorta holding everything together. I don’t see that changing anytime soon either. It is what it is I guess.
I always try to focus on or at the very least, identify the positives from the day. I suppose that the silver lining from today would be that we simply survived the day. Gavin survived his IVIG Infusion and his crisis didn’t last too long. Gavin’s meds showing up was a good thing as well.
It’s not always easy to find anything positive in our daily struggles but there were definitely a few positives today….
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Wow, this could have been a very scary incident to handle. Thankfully, he pulled through. I agree a home health nurse would be very helpful for your situation.
You have a lot on your plate ,hope everyone is feeling better soon ..
Omg I hope Gavin is ok! Hang in there buddy!
Bless his heart! You both are brave guys. I know it just has to nerve-wrack you to go through this process. I hope everyone is feeling better soon.
Poor guy sending prayers
I know that scared feeling of “just stay alive kid”. It is awful. The great thing is you are probably not losing your mind as you have reall hard things to handle. On march 20th we go get my son’s first ivig infusion. he has had it before once after bone marrow transplant. i don’t think he had a reaction or i would have remembered it since i undoubtly remember all the bad things lol. i did schedule to take off work to stay with him after we get home. My new work is being great as I told them in the interview i have to be off that day and a half day once a month for his infusion. i hope it works. we dont have the autonomic issues (that I know of) so i am not in panic mode yet. I want/need something to finally make my kid better. but then i have to remember that since he changed a med he hasnt had shingles which is horrible in your private area (he had shingles three times at 20 years old). his weird neck headaches havent happened in a while. i dont know if his mouth ulcers are better, the pain meds is working, or he is not wanting to tell me how bad it is cause it hurts me. Anyway even though it is sad, any day we actually wake up from the night before is a good day! I hope I didnt depress anyone to bad i just know the terrible feeling rob is feeling and i don’t have an answer to help (I am a fixer)
Wow. I’m sorry. Glad he is doing better now. Hope it doesn’t happen again. Prayers for you all.
Covering y’all in prayers. I’m seriously in tears right now… But God’s got this. He has you guys in the palm of His hand… http://biblehub.com/isaiah/49-16.htm –> Scroll down and read the commentaries pls as they are very encouraging.
I think of you so often `cause I think so much of you.
Thanks everyone. He’s doing fine now but it really makes me nervous that this happened today and makes me even more nervous about next week…