The hospital is a three hour drive from our house, one way. And it usually took 4-5 hours to get started and let his medicine drip in. Definitely an all day process! And an extremely tiring one. Getting an IV is tough on pretty much any kid (and many adults!) but you add in autism and all the sensory issues that go with it and it's pretty much a nightmare. It took always took me and Brad and as many nurses as they could round him up to hold him--with him kicking and screaming-- so they could start the IV.
But as hard as it was, it was so worth it, because for the first time either, his health was decent. He was always SO sick as a kid and we couldn't figure out why. When he was finally diagnosed with an immune deficiency at the age of 4, it all made sense. His immunologist tried to treat it with other methods, such as prophalactic antibiotics, but it just didn't work and he still stayed sick. Immunotherapy is pretty much the last straw, but it worked. We could tell such a difference in him right away. He actually felt good and we could get out and do things, which was such a blessing after being cooped up at home so much during his early years when he was sick all the time.
So that once a month IV treatment was hard, but it changed our lives. All the nurses were so sweet and took such good care of us. They did everything they could to make it easier on Korban and were very understanding of his autism. We would always try to take him to do something fun after his infusion, in hopes that he would remember the fun things and not just the "pokes" as he called them.
We settled into a pretty good routine over the years, but then some problems crept up. Korban's veins started getting kind of weak from all the sticks. Twice his vein collapsed mid-infusion, causing his medicine to seep into the tissues of his arm and making it swell up like a balloon. We could also see his infusion start to "wear off" over the course of the month. He would be super tired and not feel well as it got close to time for his next infusion.
In late 2015, we discussed these issues with Korban's immunologist during his check up. She talked to us about switching from IViG to SCiG (subcutaneous immunoglobulin). This meant me and Brad would get trained on how to give Korban his treatments at home. Instead of an IV, we would use tiny little needles that go right underneath the skin on his belly. It hooks up to an infusion pump and his medicine goes in that route over the course of a couple of hours. Also, the treatments are given every week instead of every month, which generally keeps the patient's levels more stable and prevents the "wearing off" effect.
They were actually starting a research study on a particular brand of SCiG medicication, and we were able to get in on that. We started it in February of this year and are so thankful that Korban has done amazingly well with it! We still have to go to Birmingham once a month for them to draw his blood and check his immune levels. This is only for as long as we are in the research study; he won't need check-ups that often once the study is over.
I was really worried that the blood draws would be traumatic for him, but they haven't been. The nurse over the research study did an excellent job earning Korban's trust. We also use the same numbing cream that we put on Korban's belly before his SCiG treatment to numb his arm for the blood draw. That helps a lot, and of course Jet does too.
We had Korban's monthly check-up in Birmingham today and all went well, as far as Korban goes. His levels are great. He feels good and is tolerating his treatments very well. It was ME that was struggling today. I managed to leave his infusion pump at home. We didn't realize it until we were 45 minutes out of Birmingam. So we had to go back and get it, which of course made us quite late. I felt bad for messing up the nurses' schedule at the hospital. Korban didn't understand the change in routine and had a meltdown. Brad and I were ill. But we made it. My mom went over our house, grabbed the pump, and met us in AL with it, which saved so much time and was a huge help. I was shown a lot of grace by the hospital staff. So things weren't as bad as my mind tried telling me this morning.
Bizarrely, we had a fire drill in the midst of Korban's treatment. The alarm was SO loud and there were flashing lights but Korban didn't fall apart. Jet did awesome. That's a whole lot for a dog to take in, but he handled it like a real champ. We had to go stand outside on the sidewalk until the drill was over. We walked outside and Korban yelled "Oh no! I forgot my shoes!" We took off like it was a real fire, which I suppose is what you're supposed to do during a drill. When I looked down and saw Korban standing out on the sidewalk like this
I got completely cracked up. All I could think about was the viral video of Sweet Brown talking about the fire where she said "I didn't get my shoes or nothin'!" And her most famous line "Ain't nobody got time for that!" I love that woman!
So all that drama today, but it all worked out and I wished that I hadn't have gotten so upset over leaving the pump at home. I mean, I wish I hadn't have left it at all, but mistakes are going to happen and it's usually our response to them that matters the most. I didn't do so well today, but I've got a lot to think about for next time.
The funny part is, I looked at Timehop this morning and realized that Korban's very first IViG treatment was five years ago today. It is amazing to look back and see how far we've come.
Asleep in his daddy's arms after fighting the IV so hard. Look how little he was!
This was after his treatment today. He's carrying the cooler with his next three weeks worth of treatments in it, slurping on a sucker, and hanging on to his beloved Jet. All his health issues have been challenging, but I'm so thankful he's doing so well and for all the progress we've made. It's amazing to see him grow and change, and I know I am one blessed mama! We appreciate everyone who has loved on us, encouraged us, and prayed for us through the years. Please keep it up! Looking forward with hope to a bright future for our sweet boy.