Going home tomorrow, maybe?

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Joined: 12/01/05
Posts: 1000
Going home tomorrow, maybe?

It looks like we will likely be able to go home tomorrow. There are a few issues to deal with first. Isaiah's doing so well with his stimulator, which is great. However, the excess muscle tone going away suddenly has left him with very low muscle tone. He needs to re-learn how to move and to support himself. Right now, he can't walk, sit up, swallow, move his bowel, etc., because he is used to involuntary muscle contractions doing it all for him. So we need to get a PT evaluation, feeding evaluation (OT), etc. And I have also requested extra nursing care for the weekends for a few weeks while he recovers. I don't want to leave the hospital until we have all of our ducks in a row. Once we get home, it will be a long road to recovery, but we will at least have everything in place that we need. I've requested these two weeks off and a limited work schedule after that until Isaiah's back on his feet.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I first want to apologize for not responding to your other post before his surgery, but please know you have been in my thoughts and prayers. Definitely don't leave before you are ready. I'm glad this part is behind you and pray recovery goes smoothly for you all. (((Hugs)))

Joined: 05/05/04
Posts: 435

It sounds like a long road, but you seem as well-prepared for it as anyone can be!! (((hugs)))

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Thank you so much for the update, and glad that it is positive!

I’m glad that the surgery seems to have gone well and that Isaiah is in a place where PT can help him. You must be so proud of him!

Gardenbug has not been able to access the site, but I will update her as well. She has been asking.

Joined: 12/01/05
Posts: 1000

Thanks all! Sarah, I'm sorry Gardenbug can't get on. Tell her I said hi.

We came home on Friday. His dystonic muscle tone returned the following day. We think it is a combination of stress, constipation, needing to heal, being sleep deprived, and the rest of the anesthesia leaving his system. We are hopeful that he will return to a state somewhere between where he was on Wednesday (almost no muscle tone) and Thursday (too much muscle tone). We were able to get overnight nursing care and daytime home health aid extended to 7 days a week for 4 weeks, which is SUCH a blessing. PT is recommending 4 days a week of outpatient PT rehab. Speech Therapist recommended doing a swallow study in 2 weeks, when he's had some time to recover, and we are to follow up with the surgeon in 2 weeks to see if the machine needs to be turned up at that point. Both the neuro and the surgeon say that it could take 1.5 to 2 years to get the device turned up to the optimal level.

The other great news (I forgot to mention) is that we were able to get rechargeable batteries, which means it will be 9 years before he needs surgery to replace the batteries!!!

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

That is awesome news all around. Continuing to pray he heals quickly.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

I'm back and so glad to read your updates.
All the VERY BEST to Isaiah and the entire gang!
Thank heavens for the extra assistance.

Joined: 05/05/04
Posts: 435

How awesome that the batteries will last so long!! That's a huge deal to not need surgery to replace them!!!

I hope he improves quickly and it doesn't take the full 1.5 to 2 years to figure out what the right level is for him!

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Is he doing any better since being home? I was reading up on his procedure, and was surprised that he was having such success so quickly. I hope it doesn't take too long to tweak thing so they are best for him.

Definitely a good thing to have the rechargeable batteries.... but how does that work?

Joined: 12/01/05
Posts: 1000

"sarahsunshine" wrote:

Is he doing any better since being home? I was reading up on his procedure, and was surprised that he was having such success so quickly. I hope it doesn't take too long to tweak thing so they are best for him.

Definitely a good thing to have the rechargeable batteries.... but how does that work?

It's charged (and programmed) remotely with a device that lays on the skin above the battery. Pretty interesting. There's a halter to hold the charger while it's charging, but it's made for an adult, so it will be useless for him. The device is very rarely used in children.

He's doing pretty well. He had a great day today, but he's having a lot of trouble this evening. We've been battling constipation ever since the surgery. He was having to urinate every 1.5 to 2 hours the other night, waking up having to pee or already wet the bed. I called the doctor, and he requested an abdominal x-ray to check for constipation. Sure enough, he was. We've had him on stool softener and senna laxative all week, but apparently that's not good enough. We're trying MOM tonight to see if that will work better. The problem is that if he is constipated his meds do not work as effectively, as they are absorbed through the intestines. We will not know how well he is really doing until we can get him regular.

Funny, but I think this is the only board where I can write the above without people thinking, "Whoa, that's way TMI."

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

"2sonsplus1" wrote:

Funny, but I think this is the only board where I can write the above without people thinking, "Whoa, that's way TMI."

LOL We do totally get it. Sorry he's constipated. Will continue to keep praying. (((Hugs)))