I promised that I would share how Gavin’s doing and what our next move is going to be.
Explaining how Gavin’s doing isn’t a simple task because we don’t really know how he’s doing. I know that probably sounds really weird but that’s the truth. I suppose I could say that he says he’s okay, for whatever that’s worth.
The reality is that Gavin’s off. We know that something isn’t right but there isn’t anything that we can do at this junction. He’s as stable as he’s going to be.
His heart rate has been dropping lower than his current baseline, established over the past year. In fact, after we got home, he looked really pale and I had him check his heart rate and it was in the low 70’s. That’s a huge drop and while for most people that would be considered normal, Gavin isn’t most people.
This is concerning but again, his heart is working fine. It’s his brain that’s got the problem.
His brain is sending the wrong instructions to the rest of his body. His heart is healthy and it’s doing what it’s being told to do. Unfortunately, what it’s being told to do, isn’t right.
Does that make sense?
The order from the Cleveland Clinic and Akron Children’s Hospital is to get him to John’s Hopkins ASAP.
Hopefully this will be something I can begin to plan next week. Dr. Moodley at the Cleveland Clinic had all Gavin’s records sent to John’s Hopkins yesterday via fax. I will call my contact at the John’s Hopkins Ataxia Telangiectasia Clinic and make sure they received the records on Monday.
After they have a chance to review them, we will know whether he needs to seen at the AT Clinic or outside of it.
This is a really big step and one that’s going to require a great deal of planning and a whole lot of luck. We have to decide how to make the trip. It’s roughly a 6 hour drive but Gavin doesn’t do well in the car anymore. If we were to fly out there, we risk him crashing on the flight and that would be really bad. At least if we’re driving we can pull over until he stabilizes. We can’t exactly stop the plane in mid-flight.
Financing the trip is an obvious concern, as is coordinating scheduling so that we can get this all done in as few trips as possible.
I’m really stressing out over this because our journey has almost run its course and we still can’t help him.
Lizze said something really amazing yesterday and it really helps to put things into perspective.
Do you know what it’s like to go your child’s pediatrician for help, only to be told they done all they can do and they refer you to a specialist. You go to the specialist, desperate to help your child but you’re told they can’t help you and you get referred to another specialist. When you visit the new specialist, you’re once again told that they can’t help your child and they send you to Akron Children’s Hospital.
After a little while, Akron Children’s Hospital sends you to the Cleveland Clinic because they’ve done all they can do to help. When you arrive at the Cleveland Clinic, you learn how incredibly rare your child’s condition is and that treatment is very, very limited, as is the information on the condition itself.
Once again, you reach a point where you have taxed the resources available and find yourself sent to yet another hospital. This time it’s John’s Hopkins and they may or may not be able to help.
These aren’t just local hospitals. These are among the absolute best in the United States, if not the very best.
How is one supposed to have hope when you’ve reached the top of the ladder and there’s nowhere else to go? That’s where we are right now. We’re very quickly approaching the top of the medical ladder and have yet to find the answers we’ve been looking for.
We know that something’s wrong and that something, is very serious but we don’t know it’s name and whether or not it can be treated, cured or even slowed down..
Worst of all, we don’t know how much time this something will allow us to have with our son.
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