Friday, June 1, 2012

The good, the bad, and the eye poking!

Things are really mixed with Jax right now.

He had a cardiology appointment a couple weeks ago. He did amazing! His heart looks fantastic! (for him) so good in fact that she is considering weaning his amlodipine. She wanted to think it over, because with him being so fragile, she doesn't want to rock the boat when he's doing so well. I haven't heard from her yet, so I'm wondering if she's decided not to try yet. We both contribute sea level to the big change. The only thing we have to watch is his VSD for signs that he is shunting a lot of blood. When his PH is high, it keeps the blood from shunting through the VSD. But with his PH doing well, he left heart will push blood through that hole into the right side.
Of course his heart and lungs doing so good is fantastic, since this is the biggest worry with him.

But neurologically, he isn't doing so hot.
I'm really praying that when we restart the diet on June 11, that a big change will happen. His neuro even told me its highly possible that his episodes are in fact seizures, but they are so deep in his brain that they don't show up on EEG. EEG's only read the surface of the brain.
But its not just the seizures, he's having other neurological changes.
The biggest thing, he is sticking his finger in his eye!

Its gotten so bad that he is starting to get a sore under his eye from his finger. The only thing I can do is put a no no on his arm. But that will just make him mad, and to me that is much worse. I can't explain or reason with him, because he can't comprehend any of it.
But this dang finger is in his eye 24/7!

Another thing is he goes into these fits that kind of look like he's having med withdrawls. It could even be looked at as a seizure. He freaks out, kicking his feet and waving his arms. He frantically grabs at his feeding extensions, and I've figured out that its Jax, and not faulty extensions like I originally thought was the problem!

See, his med port has been popping open for the last couple months. In the 6 years that we've had his tube, I've never had this problem. Another problem is his tubing from the feeding bag is getting pulled right out of the end that fits into his extensions! I was thinking a bad batch of feeding bags as well, until I saw him pulling and pulling on his tubes!
Again, the only thing that will help is a no no, but I wont put him through that. I just hope that restarting the diet will calm his little brain down a little bit, and we will all be happier campers!

*I've met some new friends in the last couple months, but been unable to add the blogs to my blogroll because of blogger issues! If you are a new follower, or I don't have your blog, please comment me you blog so we can add you!


charity said...

i'm not a new follower iv been following your blog for a couple months now but my blog is

Heather said...

Oh Jaxson, my complicated, beautiful boy. what to do, what to do?

Hoping the diet brings good things and that is agitation lessens. It is just so difficult when they cannot communicate with us, is it not?

His heart and lungs, that makes me happy, as when those two are working as they should, it must make his body feel so much better.

And the eye thing, yikes. Give me the willies seeing him do that. Must be a comfort thing ... even as uncomfortable it looks to us!

Love all around and hopefully we can see you soon.

And, get those boys enrolled in school, says the much older and not so much wiser friend ... I know it is a bummer about year round but it will be good for you all once you get in the groove of it. I know it will

I Just Love You said...

poor guy! maybe the eye poking is just a new "thing" he likes to do? like rachel went through a phase of shoving her whole hand in her mouth and then later walking around with her fingers in her ears. recently it's walking around with her fingers up her nose. (yeah, that's awesome.)

Unknown said...

yeah for Jax heart...but that darn finger must hurt!! I wonder if he is like Maddie...she tickles her eye lash for comfort...if she cannot get a hold of my hair...but I can imagine this must be frustrating for you!! Happy Summer..smiles

Anonymous said...

i'm glad that his heart/lungs are doing so well, but so sad with the seizures. hopefully the diet change wll help - maybe you'll even see less eye-poking.

what is a no-no? are they arm splints?

keeping you all in my thoughts :)

Alison said...

What is a no no???

Lacey said...

Ladies, a no no is basically an arm splint, so he can't bend his arm and touch his face. They'll put them on children when they've had surgery or something and they keep grabbing stuff.

Anon said...

Sweet beautiful boy!!!

Runningmama said...

Thinking of you and hoping the new diet improves some of his neurological symptoms...especially the eye poking. I am so happy that his heart is doing well though!

Beth S. said...

Would protective goggles be an option for a while so his eye can heal? Forgive me if that's a stupid question, it just looks so uncomfortable for the poor babe.

The VW's said...

That 2nd picture is how Gavin looks a lot of the time! Thumb in the mouth, finger in the eye! Gavin's teacher said it's a stimulation thing. Gavin doesn't dig his finger in as deep as Jax does, but it still looks painful to me! Gavin goes through spurts of doing it.....some days he doesn't do it at all, and other days he is doing it all day long. Wish I had the answer how to stop it for both our crazy boys!

Shelly Turpin said...

ouch! Poor guy.
Bella's tube falls out all the time - and she's not pulling. Makes us all nuts, especially me who gets to do tons of extra laundry!

Kimberly Lucchesi said...

Lacey, this is Kim, the nurse with Harmony. If Jax uses an enteralite pump the red port at the end of the bag tubing has a special little indentation in it. That indentation is used to fit the extension plug connection to it to hold it in place. I hope I explained it well. Plug in the red port to the extension and take the plug and stretch it until it fits into that indentation and it will act as a lock. I hope this helps. It won't do anything for the med port but you could tape that shut.

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