Admittedly, I’m a bit overwhelmed and preoccupied with this whole Childhood Disintegrative Disorder thing.
Some of you have been asking about Gavin IVIG infusion yesterday because I hadn’t yet spoken about how the new infusion site went.
So here’s the deal…
Let me start off by saying that Gavin is the bravest kid I’ve ever met.
The things he endures on a daily basis would be consider intolerable by most adults and yet he never complains about his lot in life.
Yesterday’s IVIG infusion was the first attempt at infusing his donor immune system into his thigh, rather than his belly.
In the last 2.5 years of him receiving these at home, he’s had to endure over 520 needles being placed into his stomach area. That number is low because there have been plenty of times where the needles needed to be replaced.
There’s too much scar tissue in his belly area now and so nothing wants to perfuse the way it should.
For the first time, Gavin had the needles placed into his upper thigh by yours truly and he was able to successfully complete his infusion.. It still took 3 hours but I suspect it’s because he has very little body fat.
It was very painful afterwards because the numbing cream wore off.
He’s in pain today but isn’t complaining about.
He did so well yesterday and I’m extremely proud.
Trust me when I say that having 30cc’s of fluid infused into your thigh is very unpleasant but Gavin handled thing with grace.. ☺
Rob Gorski It might be worth checking into. The big question for me would be how Gavin would do when having the port placed. They gave me a shot of Versed when they put mine in. I was awake but didn’t really care about anything. I felt some pulling and tugging in the area, but no pain at all. I don’t know if his other conditions would allow for something like that, or if he is even a candidate for anesthesia.
We’ve done subQ for about 3 years, 3 needles for about 2. Funny, my E much prefers the thigh to his stomach, which dreams him out. We’ve gotten it down to about 2 hrs when we got a replacement pump and the right tubing. He always uses a heating pad set on low. I’ve also heard of using an ice pack before or after and taking Tylenol. E has such a high pain tolerance it amazes me. I’ve poked myself with one of those needles, ouch! He barely notices anymore.
i am going to ask my sons doctor aout subQ infusion. we have been going for about a year now once a month from about 10 to 3. He has to get two bags of fluid as well. time before last none of his veins would work so we had to go do the infusition for 2 half days. then last week i got the appointment date mixed up and then my son couldnt go then anyway cause even though he was hidrated he said his veins were like the last time that it didnt work. UGGGGH!!!!! So we go on 10-14. the nurse on the phone was acting put out and was kinda being mean when she said they were all booked up etc she didnt seem to care when i said that if he missed a month he would be in the hospital, which did she want to do make the appt in a timely manner or him be in the hospital. she said she had to ask the dr. of course i couldnt just leave it there, i told her to just ask if the dr wanted the $6500 or not (he doesnt even see him). I forgot why we were not doing SubQ. I am going to ask. The only good thing about going to the dr is that at least he is outside for a minutes and i drop him off at the door of the hospital (he is 23 with Behcets) so he will at least walk
We have only been doing subQ infusions for about 1 year. I picked subQ because I knew he’d be more comfortable at home and I didn’t think he could cooperate for 3 hours (IVig) with an actual IV (he’s 5). If it’s already taking Gavin 3 hours (!!?!) to infuse, have you thought of asking about the actual IV version? That’s more like 3 hours once a month..
Good luck to you both. A bad infusion always makes the next one harder for me to do. I hate having to do them, but they are an absolute necessity. This experience HAS made me extremely thankful for plasma donors! and taught me that I NEVER want to work in the medical field. Ever.
While that probably wouldn’t end up being a plan b or c, it would possibly be an option for doing this via IV…
Something to keep in my toolbox. Thanks
Has anyone ever looked into Gavin having a port placed? One needle stick and the infusion would be much easier.
That’s a good question.. I don’t think we have because the home infusions are subcutaneous and a port wouldn’t afford that benefit.
i am going to ask my sons doctor aout subQ infusion. we have been going for about a year now once a month from about 10 to 3. He has to get two bags of fluid as well. time before last none of his veins would work so we had to go do the infusition for 2 half days. then last week i got the appointment date mixed up and then my son couldnt go then anyway cause even though he was hidrated he said his veins were like the last time that it didnt work. UGGGGH!!!!! So we go on 10-14. the nurse on the phone was acting put out and was kinda being mean when she said they were all booked up etc she didnt seem to care when i said that if he missed a month he would be in the hospital, which did she want to do make the appt in a timely manner or him be in the hospital. she said she had to ask the dr. of course i couldnt just leave it there, i told her to just ask if the dr wanted the $6500 or not (he doesnt even see him). I forgot why we were not doing SubQ. I am going to ask. The only good thing about going to the dr is that at least he is outside for a minutes and i drop him off at the door of the hospital (he is 23 with Behcets) so he will at least walk
We’ve done subQ for about 3 years, 3 needles for about 2. Funny, my E much prefers the thigh to his stomach, which dreams him out. We’ve gotten it down to about 2 hrs when we got a replacement pump and the right tubing. He always uses a heating pad set on low. I’ve also heard of using an ice pack before or after and taking Tylenol. E has such a high pain tolerance it amazes me. I’ve poked myself with one of those needles, ouch! He barely notices anymore.
While that probably wouldn’t end up being a plan b or c, it would possibly be an option for doing this via IV…
Something to keep in my toolbox. Thanks
Rob Gorski It might be worth checking into. The big question for me would be how Gavin would do when having the port placed. They gave me a shot of Versed when they put mine in. I was awake but didn’t really care about anything. I felt some pulling and tugging in the area, but no pain at all. I don’t know if his other conditions would allow for something like that, or if he is even a candidate for anesthesia.
That’s a good question.. I don’t think we have because the home infusions are subcutaneous and a port wouldn’t afford that benefit.
We have only been doing subQ infusions for about 1 year. I picked subQ because I knew he’d be more comfortable at home and I didn’t think he could cooperate for 3 hours (IVig) with an actual IV (he’s 5). If it’s already taking Gavin 3 hours (!!?!) to infuse, have you thought of asking about the actual IV version? That’s more like 3 hours once a month..
Good luck to you both. A bad infusion always makes the next one harder for me to do. I hate having to do them, but they are an absolute necessity. This experience HAS made me extremely thankful for plasma donors! and taught me that I NEVER want to work in the medical field. Ever.
Has anyone ever looked into Gavin having a port placed? One needle stick and the infusion would be much easier.