Happy St. Patrick's Day!Dear O'Son is all ready for the holiday today. It took a while but I managed to get a smile out of him. Yay!
The last few days have been quite challenging. Dear Son started having more seizures lately and when I couldn't get them under control, I called the pediatric neurologist. The medicine change helped the seizures however his choking increased significantly at night (one of the side effects of the meds is increased drooling) due to the increase in saliva. This is compounded by the fact that he is not able to clear his airway very well. He's fairly weak and has great difficulty coughing to clear the airway; at best, he'll simply yell out to clear it. I have elevated his hospital bed as high as it will go however it still isn't enough to help much with the choking. As a result, he is choking most of the night on his saliva.
The botox injections we had on January 22nd peaked around the three week mark and were less effective as time went on. He was scheduled for a second injection on May 6th however it is clear he will not be able to make it until then. I had scheduled another appointment in April with the ENT to discuss possible next steps-removal of the saliva glands and a Nissen (he did not have the Nissen when his g-tube was installed in 2004). I suspect that is where he is headed based on the failure of the botox.
In the interim, I'll speak with the ENT today to see if perhaps there is another drying agent or medication that he could use to assist in the reduction of saliva.
7 comments:
Happy Saint Patrick's Day! I love the fancy hat, especially the pretty sparkles.
Dear Dream Mom, That is a great picture of your Dear Son. Thank you for sharing it!
Though I have long read your blog I have never commented before. However, I just wanted to take a moment to tell you that I truly admire the way that you write about your dear son and your life with him. When many days go by without a post from you I worry that the worst has happened...but I'm always praying it hasn't.
I know it sounds silly, but I wanted to thank you for loving him so much. It is so evident by your words and your photos. It would be so easy to see his life as a burden, but I can tell you see it as a gift.
Thank you for sharing.
Happy St patricks day Dream Mom, Dear Son and Wiggles. Nice to see a smile from your lad.
Good luck with the paeds doctor. Sounds like a bit of a mission, and hopefully you can find a solution, as this must be quite worrying.
I have been pondering the question you asked, and will post about it soon.
Have you got any plans for Easter? Hopefully a break from school and work, and some time to put your feet up?
Your friends,
Julie and poppy q
Hope you two had a good st. patrick's day. Dear son is so grown up and so handsome!
Hope y'all can get the saliva/choking under control.
Happy St. Patty's Day, although a little late. We stopped by to catch up on you two and are glad to see Dr. Son smiling so handsomely.
Our little boy was completely unable to swallow - or so little that it was hardly worth anything. He had a G-tube for feeding and had to be suctioned often to help with dealing with saliva. Obviously it is very unpleasant. Teething was an absolute pain. All that saliva!
So we learned to position him with his head down e.g. elevating his feet and laying him on his side. He sometimes slept like that without the need for suctioning (and without choking)all night. Just let the saliva run out.
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