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.