Monday, September 07, 2009

Dear Son Update

Dear Son's seizures are much improved. The latest medicine change seems to have worked and I am no longer seeing any more seizures. They have had two incidents on the bus where they thought he was having seizures and the bus pulled over however after talking to them, I am not convinced that it was seizure activity.

That being said, Dear Son did have some issues this weekend. On Friday night, I noticed he breathing was pretty rapid. I gave him his midnight meds at around 12:30 a.m. or so and noticed he was breathing rapidly, around a breath a second. He felt hot like he might have a fever so that coupled with the rapid breathing gave me concern. I gave him some Motrin to fight the fever and knew that I couldn't go to sleep with him breathing so poorly. In the past, when Dear Son starts breathing this fast, he will usually deteriorate quickly in two hours or so, so I had to watch him carefully.

At our last visit to the pulmonary doc, she had written a prescription for some albuterol for the nebulizer. She recommended that when Dear Son's breathing got bad, to give him two nebulizer treatments a day until it improved. I had the prescription filled but never used it; as for the nebulizer, I had a new nebulizer that I got for Dear Son a few years back but had never used it. I was determined to keep Dear Son out of the ER and did not want to spend Labor Day at the hospital! I took the nebulizer bin that I kept in the garage and read through the instructions and then sterilized everything. I figured if I needed to, I could give him a breathing treatment to help him out. I stayed up until around 2:30 a.m. or so and by that time the fever was breaking and he breathing seemed better so I went to bed.

On Saturday morning, he looked terrible. His breathing was crappy and his fever was coming back. I gave him some more Motrin and his breakfast via the feeding tube. By that time, he was wheezing pretty bad and his breathing was poor. His face looked terrible, his pupils were dilated and I was fairly certain I'd have to take him to the ER. I don't think he could look any worse. He felt warm but didn't have a fever altough I had just given him the Motrin three hours prior so he shouldn't have one. I gave him a breathing treatment and some time after that, he started coughing or trying to cough things up. Within a few hours, his breathing seemed better.

On Saturday evening, I started him back on the Doxycycline, an antibiotic he takes for acne. I had been getting the antibiotic at the local pharmacy and switched to the mail order prescription. The mail order prescription was delayed (Yes, I had mailed it in plenty of time.) so Dear Son had a lapse of about a week or so where he didn' t get the antibiotic. While I could have contacted the local pharmacy for it, I thought it was only going to be a day or so before I recieved it since it said it had been shipped however when I didn't get it, they had to locate the shipment. I thought it was o.k. to miss a few days-after all, it's used for acne and it's not like it's used for seizure control. The Doxycycline however, being a low dose antibiotic, had kept Dear Son well. We had started it a few years ago to control his acne and I had noticed that he hadn't gotten sick when he used it. Now I remember that he needs it all the time, and that it has benefits beyond just acne control.

Once Dear Son started back on the antibiotic on Saturday night, things improved and he is now feeling better again and breathing normally without any fever. Yay!

I did write a blog post today and hopefully will get some time to put the finishing touches on it in the next day or so. I apologize for the delay in posting. I dropped the camera that I use to take pictures for my blog and broke it. I am not sure if I can get it fixed or if I'll have to get a new one. I have also been very busy with some personal items on my to do list that are taking a lot of my time. Nothing is wrong, it's just that I had to make time to take care of these issues and that left little time for blogging. I should be able to get back to a regular schedule this week.
9/8/09 Monday Update: I spoke too soon. Dear Son had a bad seizure this morning while waiting for the school bus. It escalated fairly quickly. I used his VNS three different times and finally had to take him inside and use the Diastat (rectal Valium) to stop it. Luckily the nurse who rides his school bus was able to help me. He is sleeping now. Unfortunately, I have to call off work.


Thimbelle said...

Wow - so sorry to hear that Dear Son had such an unhappy weekend. Did you get any rest at all?

Dream Mom said...

Thanks, Thimbelle. Yes, I did get some sleep.

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