Friday, June 08, 2007

Update II

Since my last update, things started to get better. They made a change and increased his chest PT to every four hours and that made a dramatic difference for Dear Son. It was like he was a new man the next day. They then attempted to get him off the oxygen and went a little too fast and had to go back and increase it a little bit since the oxygen saturations kept dropping. I was hoping he'd be released Thursday morning however his oxygen saturations on room air were a bit low, at times dropping back to 88 or 89, and overall just a bit too low. They decided to keep him in another 24 hours to make sure he could handle the room air just fine and continued the chest PT every four hours.


I met with the ENT yesterday. They will be doing botox injections into the saliva glands to help with his night time choking. As you may recall, Dear Son has a lot of issues with night time choking since he is unable to manage his secretions (this is part of the progressive motor dysfunction/progressive degenerative disease). Normally, when saliva is released in your system, it is pushed into your mouth. When they administer the botox injections, it will prevent both of these, thus hopefully making it easier for Dear Son. He decided against doing the botox and Nissen together (the Nissen would assist with reflux) so that we can better measure the effectiveness of the botox vs. performing them both at the same time. They were uncertain as to how much of his issues were caused by being unable to manage his saliva vs. reflux. My best guess is that 80-90% of his choking is due to choking on his saliva with the remainder being reflux. If effective, botox injections are done every three to four months (it wears off). If we decide later he needs the Nissen, they can perform both the botox and the Nissen at the same time. If the botox is not effective (there are a small number of cases where it doesn't work) or if his issues continue with the botox, we can then talk about the next step, which would be removal of the saliva glands. I am hopeful we would not have to have that done. The botox injections are done once a month at Big Academic Medical Center and require a radiologist present during the injections. This should be done by the end of June and they will contact me once the schedule has been set.


Dear Son is very alert and back to his charming self. I left the hospital today since I had to work today and tomorrow and his Dad is covering and staying with him. Dear Son enjoys that since his Dad has plenty of country music loaded on his iPod.


I expect Dear Son to be released from the hospital today (Friday morning). He will be released with an antibiotic so he can complete the ten day course. I am excited that's he coming home and even more excited that they were able to control the pneumonia before it got any worse.


Thank you for all of your continued thoughts and prayers. It meant a lot to us.

15 comments:

Jodi said...

That's great news. I know he will enjoy being home much more than the stinky ol' hospital.

Anonymous said...

Hooray! Coming home!
Janet

Karen said...

I am so glad he is doing so well! Thanks for the prompt updates. I have to ask, what does chest PT consist of? Sounds interesting!

Most of the babies in the special care unit at the local chlidren's hospital I have seen have Nissens...it seems like it makes a huge difference for those little preemies.

Lois Grebowski said...

Yipeee! Dear son is doing better and coming home!

girlfriday said...

Good to hear that your son will be home. Also good news to hear that there is treatment to prevent recurring pneumonia. prayers for good homecoming.

Anonymous said...

Wonderful news! I know you will both be relieved to home. What a strong young man you have, and as always, what a beautiful heart you have.

Jamie from Portland Oregon

Sara said...

I'm so glad he gets to come home. I know how hard it is to have a child in the hospital on a long term basis.

Yay for antibiotics!!!

Karen said...

So glad to hear that Dear Son is coming home soon. I'd never heard of using Botox for salivary glands before. How interesting. I hope it helps.

isles said...

I'm so glad he's getting better. Whew!

Anonymous said...

I'm always surprised at the things I learn on your site. I didn't know they were using botox to control secretions in patients who were chronically NPO for risk of aspiration. I imagine it's expensive but a nice alternative to another surgery.

Glad things are re-stabilizing.

Ex Utero (using Sarabeth's computer)

Dream Mom said...

Karen-Chest PT involves taking a small round rubber disk with a handle on top and patting the patient's back and chest to break up mucus. It's particularly effective in patients like Dear Son who spend most of the time lying down and aren't able to sit up or to control their own secretions. After they are done, it usually makes them cough up the secretions. It is performed by a Respiratory Therapist.

Big Academic Medical Center performs around six botox injections every month and group them all on the same day since it requires the services of a radiologist. The have one ENT who performs the vast majority of them and another ENT that is learning how to do them so they are all done together. It is effective in the vast majority of the cases there; botox does need to be redone every 3-4 months when it wears off.

I remember the old days, prior to botox being used for wrinkles, when it was used for kids with CP with excess tone in their ankles/feet to help them walk.

Interestingly enough, I checked with the insurance company to see if the Nissen (we are holding off on that) or the botox needed to be pre-certifed. The Nissen only needs to be pre-certed if it's in-patient but the botox always needs to be pre-certified due to it's wide usuage. The insurance company and I had a good laugh over that.

Anne K. said...

I haven't read posts for a week or so, and am just catching up - so sorry for what you've been going through, but so happy for the most recent positive update. Please know many people are sending warm thoughts and wishes your way.

gail said...

Hi Dream Mom, I accidently ended up on your blog...found it rather hard to read as I have a 10 year old (almost 11) daughter who has a novel genetic disorder. She is severely disabled and found so many similarities with you. Think it is great you can share your story.

Hope you are home and all is good, Gail.

neonataldoc said...

I, too, hope that things are going better.

zoe said...

Hope that Home Sweet Home is on your horizon very soon! Praying for you both.

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