Friday, April 25, 2008

Hospitalization and Botox Update

Dear Son was released from the hospital yesterday for treatment of gastroenteritis. He came home from school on Tuesday and seemed fine and was actually quite happy. He had a late supper (via the g tube). He was half way through his dinner when I had left his bedroom for ten minutes. When I returned I had noticed some white foam around his mouth and thought he might have had a seizure. I turned on the light to investigate when I noticed he had vomited severely (through his mouth and nose) and was lying in vomit and an enormous volume of liquid stool (the amount is beyond words). I became quite alarmed at the sheer volume of the situation since I had never seen anything quite like it. I paged the doctor immediately thinking something terrible had happened. While waiting for the return call, I cleaned everything up. (This was a feat in itself since I couldn't lift him off the bed without the hoyer lift. This meant, I had to figure out a way to do the entire bed change, clean up and new sheets without lifting him out of the bed.) It took a half hour. I was concerned he may have aspirated since he was on his back when I came into the room and I had left him propped on his side. When Dear Son vomits, he tries to problem solve by rolling on his back which is dangerous.

No sooner than I had it cleaned up, he began to vomit more severely and I called 911. We went to local hospital and then transferred to Big Academic Medical Center. The concern was aspiration and dehydration. I was up the entire night on Tuesday and it didn't feel very good. Fortunately, a fever never developed so he was taken off IV fluids and we were able to come home last night. They assured me it would not get any worse.

Since we got home, he has continued to lose a lot of water via his bowel so my main concern right now is dehydration. I am giving him more fluids than normal. He seems a bit warm so I am watching for any fever.

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Botox Follow Up

For some time now, Dear Son had been experiencing severe night time choking. In January, we tried botox injections for him however the result was short lived. It lasted around three weeks and the effects tapered off over time. Typically, they'll try the botox injections every four months if they work. Since the effect did not last until the next injection time, the ENT nixed a second attempt. Our next step would have been removal of the saliva glands and if that didn't work, a trach might be necessary. I really didn't want that to occur.

I spoke with Dear Son's Pediatric Neurologist regarding the issue and he suggested we try a scopolamine patch. Dear Son has been using it since April 1st or so and the results have been downright amazing. The patch worked right away and stopped nearly all nighttime choking. Prior to the patch, Dear Son might spend the entire night choking so severely that he didn't get much sleep. The patch reduced 99% of his nighttime choking and he's been sleeping very soundly ever since. He sleeps so soundly and quietly now, that it took me a few days once he got the patch because I didn't hear him breathe at all. It's been a few weeks and now that he is getting some really good sleep, he seems much happier and more like his old self. He came home from school on Tuesday and gave me a ton of kisses while sitting in the rocker. (He leans his head over towards mine for me to give him a kiss or if I put my hand near his mouth, he licks it, that's how he kisses.) I can't get over the dramatic transformation.

Interestingly enough, the insurance company had initially refused approval of the botox and had recommended scopolamine. The pediatric ENT had some conversations with the insurance company and explained to them that scopolamine is an adult prescription and not recommended for children. He explained that Robinal was the pediatric equivalent of scopolamine. We had tried Robinal however it did not work for Dear Son at all; the fact that the scoplomine patch working is fantastic! We are lucky to have such a good pediatric neurologist. In addition, since Dear Son is sleeping well, I am finally getting some sleep.

7 comments:

Poppy Q said...

Oh Dream mom, what a scary time. I am glad that things have been sorted though, and that the patch is working so well. It is awesome that both you and your son can now get some sleep. I know you need it.

Thinking of you both and wiggles.

Julie and poppy Q

Heather! said...

Poor guy, that sounds horrible! Can you ask his doctor's about tubing him some probiotic powder?? That is what our ped suggested when my girls had GI bugs. It really did seem to help with the healing. Hope he can get his energy back before too long and doesn't have any further motility issues following this.

Emily's Mom said...

Dream Mom, what an awful experience for you & your son! At the time, that must have felt simply overwhelming, and my heart just broke for you reading about it. I've actually shed tears cleaning up alone after my daughter (who has Angelman's Syndrome) during bouts of severe flu and rotavirus. When I read your post, however, I realize that I have experienced nothing about which to complain.

As a "fellow traveler" in the world of special needs parenting, I almost hate to write these words, for no matter how sincere, they are only words. I wish I could do more; I wish I could be there to give you some real hands-on help.

I am glad you are finally getting some sleep. God bless both of you!

Emily's Mom/SE Wisconsin

Baby Island said...

First and formost, having to deal with diareah is one thing but volumns of it and all by yourself, quite another entirely!! I'm feeling for you! Hope DS gets out of this nasty itis soon without any fevers!

Now as for the patch, WOW!! Thats awesome!! I am soooo pleased to hear this and what a difference some sleep has made for him and you!! Love the kisses too!

Daisy said...

Oh no, I am sorry your son was so sick. I'm glad he's back home and I hope he gets all better soon.

I think that's great news that the patch worked so well! I'll bet getting some sound sleep will be good for everyone.

Shannon said...

Oh how scary. I am really happy to hear he's home from the hospital and on the mend.
How's mom doing?? I know how exhausting it is when our kiddo's are in the hospital. Do you stay there with him??

So the patch works huh?? That is really good to know!! As I told you in another entry I have been frightened at the prospect of my son getting botox and I feel a bit relieved to know that the patch may be worth looking into before heading towards the injection.

Jan's Funny Farm said...

It must be wonderful for both of you to finally be able to get some good rest after going through such a long time of losing so much sleep. Sleep is restorative and necessary.

We hope Dear Son is doing better. That would have been terrifying for you to go through.

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