I’m going to keep this pretty short as we have our hands full today. When I can, I’ll do a more detailed post but for right now this is all I’m capable of. We met with the Immunologist this morning at Akron Children’s Hospital. If you recall we were referred there when it was discovered that Gavin’s lgM and lgG were low. We thought that the our biggest problem was going to be scratch testing. We couldn’t have been more off target if we tried…
We didn’t understand what low meant. As it turns out Gavin lgM and lgG are extremely low. They are so low in fact that he will at least need monthly infusions going forward or we can put him on a pump and at home at least once a week. Basically, a small (subQ) needle goes into his belly and the pump infuses over a 2 hour period of time. Lizze and I were both speechless and in shock. We didn’t have a clue that this was going on.
She also discovered that Gavin has pneumonia as well and put him on heavy duty antibiotics. We thought it was allergies because we were asking about changing allergy meds. She said that she thinks that the meds aren’t working because he doesn’t have allergies. She thinks he is chronically sick and that the allergy symptoms are actually chronic sinusitis. At this point the guilt sets in. How did we not know this? How is this even possible? How could we have missed this?
As we get closer and closer to the light at the end of the tunnel everything begins to fall apart.
After examining Gavin and reviewing the labs she believes that Gavin has Ataxia Telangiectasia, a degenerative neurological disorder that explains much of what we couldn’t explain until now. My understanding is that we still need to genetically confirm this but right now we have to give him back his immune system before we can do anything else.
She explained that people diagnosed with Ataxia Telangiectasia usually only live to their teens or early twenties. It took everything we had not to break down right there. We didn’t want to alert Gavin to anything.
With that, I suddenly realized that light at the end of our tunnel was what I had feared most……..a train..
That are going to call us ASAP and tell us when to show up for the first infusion. She wants in done in the next three days. On the way home we stop to get ALL the collective blood work done that needed done and get x-rays to confirm the pneumonia. Gavin was super brave for both and had 7 or 8 vials of blood taken.
I wanted to write all of this down before I forgot anything. I figured this was as good a place as any. I feel like I’m forgetting things but I don’t think I did. As I was talking to my mother in law on the phone while writing this AEP shows up to shut our power off. This not a good day……..
UPDATE: I realized what I forgot. They are testing Emmett for the same disorder because of his chronic fevers. How could I have possibly forgotten that? What’s wrong with me? ……………………