After the preparatory medications have had enough time to kick in, it’s time to draw up the IVIG and begin the actual subcutaneous infusion..
These are the medical supplies needed to prepare the IVIG solution, load the pump and inject the medication into Gavin’s body.
We need the actual pump, the tubing and needles, extension tubing, 60cc syringe and needle, 50cc bottle of Gammagard, 10cc bottle of Gammagard, obsites and alcohol wipes.
I begin by drawing 60cc of Gammagard into the 60cc syringe. This is the total amount of medication that will be pushed this morning.
Next I attach the tubing to the end of the syringe and load it into the pump. It’s import to flush the tubing in order to push all the air out of the lines. I do that by turning the pump on flushing the air out of the lines.
Once the pump is primed and ready to go, it’s time to place the needles in the designated areas on Gavin’s stomach.
We wipe away any access Lidocaine cream and wipe the area with an alcohol wipe. Next I remove the red cap off of the first of three needles and carefully press the needle into the fatty tissue on his belly.
This process is repeated two more times. Obsites are placed over the needles once they have been placed into his belly.
After the needles are placed and secured, we simply turn the pump on and the IVIG infusion begins.
One of the biggest things we have to watch for is fluid leaking out from under the obsites. This would indicate that the needle isn’t seated properly and the fluid is not being properly infused.
That’s about it. The process takes about an hour and a half. We have to monitor his vitals and visually check the infusion sites to make sure there are working.
One of the problems that we have noticed is that Gavin begins to go into an Autonomic Crisis almost immediately after the infusion begins. We can tell because he develops a transient rash that only occurs during an Autonomic Crisis.
The rash appears on his chest first and within minutes, literally migrates to different parts of his body.
As with his first subcutaneous infusion last week, Gavin stabilized quickly and there was no cause for alarm. This is probably the stickiest part of the entire process because if he doesn’t stabilize, we’re in serious trouble.
Both times now, Gavin has fallen asleep for the entire infusion. This makes it easier on him emotionally and easier on his body, physically.
When the pump has finished and the infusion is complete, we simply pull the obsites off and the needles come with it. They are disposed of within the Sharps Container and Gavin spends the rest of the day taking it easy.
There are three large bumps where the Gammagard was infused. These are a bit painful but disappear as his body absorbs the solution.
That’s about it.
Next Friday we will rinse, lather and repeat. This has to be done every single Friday for the rest of his life. It’s a bit daunting to think of it like that but it’s the reality of the situation.
There are a million things that could happen, causing everything to change once again.
However, right now everything is as good as can be expected and for that I’m truly, truly grateful.
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This is Merrick. Having his 2nd infusion in our Dr’s office just so I could learn how to do it.
We are in South Africa and my 3 kids also have weekly infusions. Friday is our day too. Will think of you every Friday too.
also does he do well with the tegrederm? my kid is alergic to almost all kinds of adhesive and it drives me crazy. he has to have it to put over his pain patch because they dont stay on good, then when he uses any tape and we take the tape off his skin comes with it. the other issue is that when he sweats sweat gets under the patch and the tape wont stick for sure because of the wetness. it has been an ongoing problem.
glad it went well. hang in there. i really liked how the cats were right there with him. glad he sleeps thru it. i didnt know if you have to give him benedryl or anything before (that may be too personal)