It’s really stressful when my son’s medications don’t arrive on time

Gavin is officially out of his IVIG medication and he's not been able to do his IVIG infusion today as a result. I've spoken with the home care pharmacy that's responsible for delivering these life saving medications and they're out for delivery today. That's good to hear, it really is.. That being said, why do we have to cut things so close? Why not provide an overlap because things happen and an overlap would prevent him from missing his infusions as the result of a shipping delay. That makes sense to me.. At the very least, it would alleviate the anxiety sorrounding this time of month when his supplies are depleted, he needs his infusion and the delivery hasn't arrived.. Life is stressful enough and this would make it a…


We hit an unexpected snag in today’s plans

I feel like I slept pretty okay-ish last night. I went walking first thing this morning while Gavin was doing his IVIG infusion. We hit an unexpected snag in today's plans. The idea was to walk and then take Gavin to get his bloodwork done.. Unfortunately, the lab was closed today. I guess I wouldn't have thought they would be closed but they were. This isn't a huge deal but it cuts us closer to the deadline for getting his labs done. His Clozapine runs out on Wednesday morning and son we absolutely must get them done tomorrow. It's already going to be a busy day because of Gavin's appointment with neurology but we're going to have to make it work. I hate when we cut things this close with…


It’s been a rough morning for Gavin but he totally surprised me

It's been a rough morning for Gavin. I didn't see too much of him until after I got home from taking the boys to school and getting my morning walk done on the way home. When I arrived home, Lizze was watching him get his IVIG infusion ready. I could see from the moment I walked in that he was not in a good place. Sure he was pleasant and polite as always but I could see he was struggling to stay on the road. He got his infusion going and returned to his bedroom sanctuary to wait the process out. Before long, he was back downstairs because one of the infusion sites was leaking a tiny bit. Gavin has historically not done well with problems arising during one of…


Gavin did an amazing job this morning

Gavin did a really good job this morning in regards to his IVIG infusion. He got up early and put it together, woke me up in order to check it and then completed the procedure without any help. For me personally, that's a great way to start the week because so often he struggles with these anymore and a bad infusion sets a tone for the week. Great job Gavin.. Keep up the hard work and keep moving forward.


Emotionally absorbing another heartbreaking struggle, it must be Monday

As with every Monday and Friday for so many years now, Gavin needed his IVIG infusion this morning. Once again, Gavin put the supplies together in order to receive what essentially amounts to an antibody transfusion. This is only necessary because his body is unable to produce the necessary immunoglobulins needed to fight off infection. In other words, his immune system is severely compromised. This morning was no different than all of his more recent IVIG infusions. He struggled to put things together properly. He's been struggling to draw up the medication, without wasting a good amount of it and spent a large amount of time freaking out over the entire process. He's been struggling more as time goes by. There was an interruption in his infusions for two and…


Gavin’s #IVIG infusion was a very frustrating experience today

So Gavin's medication arrived. We went through the newly received supplies and figured out how to draw up the new solution. Previously, we were using 3, 10cc vials for a total of 30cc's of solution.With the new medication, there are 2 vials total. The first vial contains 10cc's and the second contains 5cc's. That makes for a total of 15cc's and exactly half of the solution he had previously been infusing.The total amount of actual medication remains consist at 3 grams.With that out of the way, the bad news is that Gavin likely won't be able to do these on his own, at least for now.I realize he's a bit out of practice but he made mistakes, the biggest of which wasted about 5cc's of the medication. He wasn't even…


It’s a HUGE day for us and here’s why

After weeks of stress, worry, fear, frustration, anger and exhaustion, we should finally see Gavin's IVIG infusion medication arrive today. We don't have a specific time but it's supposed to be before lunch. I can't totally exhale until they actually arrive because this has been a serialistic nightmare this far. There have been a few times along the way that we were supposed to have had these issues resolved and his medications delivered. I'm absolutely hopeful that by this time tomorrow, we will have out this all behind us.


The best news we’ve had in a month

I received a call from Akron Children's Home Health, the pharmacy we get Gavin's IVIG infusion medication and supplies from. Everything is set and Gavin should have his new medication on Thursday morning. There was a slight delay because apparently, there were special contracts that needed to be signed in order for them to even carry the new medication. We also have a bit of trial and error ahead of us as well. They are sending out the tubing they believe is correct for Gavin's IVIG infusion. The medication is supposed to be infused over a certain period of time. The pharmacist wants to get things down to about sixty minutes per infusion. If the tubing works as expected, they will send out more. If it doesn't, we will try…