Jaxson Jaxson!

I know talking about Jaxson and what is going on with him sometimes seems like groundhogs day. That or its just over your head and you get bored. I know this because I am major ADD, and if it doesn't interest me I'm quick to pass over.

I notice a lot on Facebook (although I'm not a huge Facebooker!) that my posts about my cute princess generate much more chatter than if something is going on with Jax. I know she is super cute, but sometimes Jax just needs those extra prayers! And with him, its not a ton of cute antics, unfortunately!

Like right now. He is being a naughty, naughty boy! My ped finally called me back, and while I was upset at how long it took, she did bring up a good point. The airway issues, in this case, is probably reflux. I don't know why I didn't think of this before! She asked about allergies, which I can safely say is not the case because we know he tested negative for EVERYTHING! But when she brought up reflux, I remembered that his nissen is not working, and that we are feeding him into his intestines because we can't trust him not to aspirate. So more than likely he's refluxing stomach acid and aspirating on it. Fortunately, the one specialist I do have an appointment with is GI. Hopefully we can get his nissen fixed quick!
He is breathing much harder than usual, and we aren't exactly sure if its because of the reflux problem. One thing with Jax, because of his severe hypotonia, he breathes super shallow. We had to turn off the alarm on his vent for low volume, because it has such a hard time sensing his breathes that it alarms all night long! That is also why his lungs have improved so much with a rate on the vent. He gets those breathes automatically, and not just sporadically when the vent "thinks" its sensing him! His sats have been really good, and we believe that is because he is breathing harder and actually getting more oxygen in. Although they are starting to drop, and he is going to start to tire of breathing this hard, if he hasn't already. I've had to leave his g-tube to drain, because when he breathes hard, he swallows air, and I'm getting tons out! Tomorrow I may recommend a blood gas, to make sure he is not starting to hold onto CO2. Its actually a nice thing to have life support in your own home. That way I don't have to take him in!

The other, scary thing....I'm starting to see more seizures. I was told the VNS could take up to 2 years to show the full effect. He hasn't had an EEG since having it placed in June, but the magnet is having no effect on these particular seizures. Jax has so many different types of seizures, that the VNS may actually be helping, but not for this kind. The scary thing is, the kind I'm seeing is the kind he had that got worse and worse until he was in status. So seeing them getting longer, has me terrified that we will be in that awful place again! Neurology here is so great, and I know they have a lot more tests to offer than he ever had done in Utah, but the referral process is dreadfully slow. We don't even have an appointment with them yet. If I get too concerned, I'll just take him to their ER, that way they have to see him on the spot!

I'm wondering if we need to restart the ketogenic diet. I hated that diet, but I'd rather have that then these seizures. We aren't sure if the diet stopped the seizures, because it was started before he fully woke up from his medical coma, but they have gotten worse since stopping the diet a year ago. And actually I'd rather have the diet, and the VNS, and be able to stop some meds that we know aren't really working anyway!

Jax is in desperate need of some tuning up! Lets hope we can get these specialists scheduled ASAP!