Changes

Now that we've finished our exciting week full of fun, family and friends.. I guess I should share some of the changes that have been happening.

I think I mentioned when we went to Disneyland that Jonas had a really hard time coming off his bi-pap long enough to ride multiple rides. Maybe a half hour off at a time is all that Jonas could tolerate. Now Jonas has decided that coming off at all is a bad idea. When we take him off his mask, he immediately starts to cry, panic, and therefore turn purple/blue because he is not breathing. If his pulse ox is on you can see that his oxygen sats drop to 70% or below. That is not a good thing. Baths have become a big disaster leading to big respiratory distress situations. We even needed to start using oxygen while doing cough assist. He couldn't even do this therapy without dropping sats inbetween sets, which is like seconds. This is something you expect when they are sick, but Jonas is not sick. It's the progression of the disease. It's not a good quality of life when you can't breath on your own for two seconds.
We recently had our 3 month visit with Dr. Swoboda and talked about these changes. We've set up some appointments to get some more answers to make some decisions. In the mean time we've started using some medication at least to take a 30 min break. It's called Versed. Jonas has taken this, in bigger doses, before when he had his g-tube surgery and when he was intubated with his pneumonia. When Jonas takes it now, it's being used in a dose that will help calm down. Kind of like anxiety medications. Basically there are 2 reasons why Jonas struggles:

1. The disease is getting worse and he really has a harder time breathing on his own. His breaths are very shallow which doesn't allow for too much oxygen to get in.
2. He has a panic attack. He knows that he is dependent on his bi-pap now and when that security is taken off..he panics.
So this med helps him stay calm and therefore realize that he can breath on his own for a short time. This is how we have been doing baths recently. We use oxygen using a nose cannula just to give him a little boost and help keep that oxygen flowing. The med kind of makes him a little out of it, hence the kind of not there face. So even though he gets a break of his mask. He isn't completely himself. It's a little funny because you can tell he starts to get really loopy right at the beginning when it's setting in.
So we do get some smiles before. It's so good to see this beautiful, little face. To kiss his little nose and forehead, heaven.
Things to think about because even more changes are on the way. Not sure what exactly and that would take a whole other post to explain. For now..I still can catch a moment when he is feeling strong (like above) and I hold on to those.
Changes are not easy and I'm the worst at them, but that's how life is. Can't fight it so we try to make the best of it. I'm still learning.