Sunday, December 18, 2011

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!

15 comments:

ANewKindOfPerfect said...

Lacey, I am sorry that your posts about Jaxson leave you feeling ignored. I think of your sweet boy every day! ((hugs)) I would think his VNS should be adjusted higher/faster/whatever. I would honestly take him in soon if he is acting like he did before he went into status. It would suck to go to the ER, but it would be better than going to the ER in status. :( When is your appointment with Dr. Wozniak?

Junior said...

praying for Jax, hugs.

G-Zell said...

jaxon is def a cutie pie. Merry Christmas to you all. :)

Sandryte said...

Pour Jaxson - he has to bear so much! But he is so adorable, this small hand and cheeks, and good eyes - he such a beautiful person!

He is surely covered in our prayers!

Our Family said...

can't your ped get you worked in sooner? i know when we really needed appointments our ped always got us in. sending good thoughts your way!

nicole said...

Praying for little Jax!

Lane said...

I will keep sweet Jaxson in my prayers! He is such a fighter!

Scrappy quilter said...

Awe Lacey,don't ever stop writing about Jaxson. He is the sweetest little guy and precious beyond measure. Praying for him!! Hugs

Michelle said...

Keeping you in prayer. Jaxson comes to my mind at night, when I'm thinking of my blog babies. I know he's not a baby, but that's how I think of the folks I've come to love via blogger. Praying you will find some answers and doctors' care sooner than later.

Meghann said...

I love Jax! I'll pray extra hard the specialist come through for you.

Alison said...

Jaxson - stop scaring your mummy!

Amy said...

Lacey be proud of you. You have done so well with all your children - escipally Jax. I go in spurts posting as time allows. Heck I need to get on my blog and post. I am so bad - sorry Jax - we love you!!!!

Janet said...

Always praying for sweet Jaxon. He reminds me of my Aziza. I hope that Jax and the whole family have a healthy and Merry Christmas!

Janet Caswell (on your FB!)

Anonymous said...

Please know that although your little girl is a CUTIE, my heart belongs to Jaxson!!! I have a little boy that had a brain injury and they remind me of each other. He is so special to us and I just want you to know his accomplishments get celebrated and when he's sick he gets prayed for by me and my church. We won't ever give up on him!

Shelly Turpin said...

I think of Jaxson all the time. I worry about him. I read on a vent email about a Mama that adopted a little girl on a vent from out of state. The first thing they did was admit her and get to know her. She got all of her specialists lined up and after a few days, she went home with nursing and equipment in place. I have no idea how or why she did it that way.
I keep hoping things will fall into place for y'all very very soon. I worry about you and him. How goes your medicaid application?