Tonight’s posts will have to do with some changes that are coming. The two changes that will be discussed, beginning with this post and ending in the follow up a few hours later, should bring about positive results.
In this post, I wanted to share a change that is being made to Gavin’s biweekly IVIG infusions that should improve his experience.
Let’s get everyone caught up.
For starters, why is Gavin on IVIG and what does it do?
I’d have to look back for the exact date but roughly 4 years ago, it was discovered that for some unknown reason, Gavin’s immune system had become permanently and severely compromised.
No one has any idea what happened or why but there it is.
As a side note, this happened about the time he was diagnosed with epilepsy and began suffering severe autonomic dysfunction..
He’s sort of a medical mystery that perplexes even the top doctors at the Cleveland Clinic.
Anyway, as a result of his immunodeficiency, Gavin needs to receive donor antibodies to replace what’s missing or defunct within his own body. These donor antibodies come in the form of IVIG or more specifically, GAMMAGARD.
At this point in time, Gavin receives IVIG infusions twice a week in order for him to stay healthy.
The medication is in liquid form and is pumped subcutaneously into his belly. This is done via two small but sometimes painful needles that I place directly into his very minimal belly fat.
The first two years he had to go to the hospital to have a 6 hour long IVIG infusion via IV. It lasted for roughly 30 days, so he only had to do this once a month.
Unfortunately, when his autonomic dysfunction began, it was no longer safe for him to make the drive to Akron Children’s Hospital. This led to the infusions being done at home.
As his condition worsened, the frequency needed to be adjusted in order to keep his antibody levels up.
That’s pretty much the story and since everyone is now on the same page, we can move on to the change that is being made, beginning tomorrow.
When Gavin receives is biweekly infusions, they can take anywhere from 1 – 4 hours, depending on needle placement and other complications. It normally take about 1 – 2 hours from start to finish.
Beginning with his next shipment of supplies, which is in the morning, we are reducing the length of the tubing to drastically decrease the time it takes to infuse the 30 cc’s of medication.
In the past, an infusion using the shorter tubing took less than 30 minutes to complete and Gavin’s really prefers to use the shorter tubing because it’s less time the needles have to be in his belly.
When he receives his infusion in the morning, he will be using the shorter tubing and as long as his body can tolerate the more rapid infusion rate, this will be the new norm for the time being.
Gavin’s pretty excited and it makes me feel good to be able to provide him with some comfort in regards to these infusions.
This will be an overwhelmingly positive change and I’ll be sure to let you know how it goes.. 😀❤️👍