Saturday, September 27, 2008


I figured I should post an update. Aidan had the evaluation for the vital stem therapy. We start going 3 days a week for that starting next week. Vital stem is basically like TENS therapy except that it is for swallowing. They put these little conductor pads on Aidan's neck and an electric current stimulates the muscles. It is supposed to strengthen the muscles. From research that I've done on it, it is really successful. I don't know how long we'll have to take Aidan for treatments. If he shows increased improvement with swallowing, then they can do another swallow study. Once Aidan successfully passes a swallow study, we will be able to reintroduce foods by mouth.

Not a whole lot has changed with Aidan since I last posted. The other day during his OT, the therapist had him on a yoga ball and was rolling him back and forth and he was focusing/tracking her, so that is new. He's had some increased seizure activity and has had several storms this week. It's very exhausting when he is like this.

We are also now dealing with the possibility that we are going to lose our nursing coverage because they don't think that Aidan's condition is "serious" enough to require a nurse. They only want to offer us a CNA, but CNA's aren't legally able to administer medication. If Aidan were to have a storm and I weren't here, the CNA couldn't give him anything, they couldn't even give him his regularly schedulded meds. I'm just irritated by the whole thing.

If we had left the trach in, that would have made him qualify for the "hospital" level of care, but because he can breathe without the trach, he's miraculosly cured... yeah, I wish! Sometimes, well, no, MOST of the time, I think that our government absolutely SUCKS! Those who manipulate the system and are here illegally are given anything and everything, but someone who truly needs assistance is left hanging.

I'll be the first to admit that Aidan doesn't always require a lot of nursing intervention WHEN he's having a GOOD day... but when he's having a BAD day and he's storming 4-8 hours at a time, he needs a lot of care. He has medication scheduled around the clock, and I can't always be here. I have a 15 month old who needs me too. Evan has to go to the doctor, I have to go to the doctor or the dentist and run errands. It isn't practical for me to drag a 15 month old and a 2 and a half year old who is immobile into Walmart to buy groceries... I don't have enough hands! Maybe if I clone myself, then I can get everything done. If anyone knows how I can do that, let me know.

To top all of that off, Russ and I went to look for apartments today. We can find several that are big enough and within our budget BUT they are income restricted. We would have to have 7, yes 7 people on the lease, with only Russ working to even qualify to live in one of these places. GIVE ME A BREAK! How in the world is anyone supposed to live and keep their heads above water in this place? It's absolutely disgusting.

Anyway, now that I have ranted. I think I need my therapy... I crochet to keep from going insane... that's what I've been doing lately instead of boring you all with my rambling. Hope you all enjoy your weekend. Some prayers that Russell's job goes permanent or the contract is extended would be greatly appreciated. We actually did find an apartment that is perfect for us and it is handicap accessible. We need to move quickly on it, but I'm cautious because of this whole situation. I know my mom is ready to have her house back to herself and I'm ready to get out. It will be better on all of us. But I don't want to go into something and get in over our heads. Thanks again for all of your support and prayers.



Jacqueline said...


I am not expert on this. But you do have an appeal process through insurance to keep the nurse. Also, the Department of Insurance is there to help you too. Call them and see what your rights really are with keeping the nurse. I have called over what I am being charged for medication. Some times I am successful but I have learned I have to be smarter than the doctors and insurance. Then I get what I want. Sad I know. But that is just part of being a Mom. It qualifies for Super Hero Status! Good Luck!

Kristina said...

Can you get a special dispensation for the apartment since Aidan has special needs? Since you need a bigger space because of his special equipment, you might be able to get some type of something? I really don't have any idea, it's just a thought.

It was always frustrating to me when we made too much money to get into the better apartments and too little to get into the more expensive/less appealing apartments. Good luck.

The Tuba Geek said...


We are hoping they'll allow us to have Bear (our Chocolate lab) in the apartment. But I think that regardless of what they say, we will have a place to live soon.