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.