Like Ralphie coming down the stairs in Christmas Story, Chaser was wheeled through the double doors of school with his Rudolph costume! He pulled it off well! He celebrated his school Christmas party yesterday- and he had a great day- unfortunately he had to say goodbye to Debi, his school nurse who has been with him since day one. Not only did she take incredible care of him, she became a friend to him, as have the rest of the awesome staff there. Debi, thank you for all you have done with Chaser, and good luck on your new adventure at the hospital!
We had an hour phone conference with our General Practitioner from Mayo yesterday to discuss the appointments last week right. I expressed to her that I was very uncomfortable, infact- sick to my stomach, with the thought of removing some of his major salivary glands. I get that we have to consider his health and do all that we can to protect it, but different from many clinical opinions, God is running this show, and I don't want to do anything that could make life more difficult when he has recovered- to what extent he recovers isn't up to us, but we need to do all we can to get him there. Having said that, here is the situation we are facing:
After reviewing the scope and witnessing the amount of salvia that engrossed his voice box, the Dr's are very concerned that Chase is not doing anything to protect his airways. With the previous Lung cultures showing a "petri dish" of bacteria- originating from his salvia, it is clear he is aspirating some.....to what extent and if/ and what amount of damage it is doing to his lungs, we don't know. The team is proposing we remove 2 of his major salivary glands, and tie off another 2....potentially eliminating 75% of the secretions that he is struggling to control. Theoritically, he would be able to handle the 30%, and as previous patients that had this procedure done, he could live a normal life after a recovery. We are struggling with this- and I need to know there is absolutely nothing else we can try prior to this- we have tried botox to the glands 4x's- the last 2 were not effective....actually may have made matters worse? He is currently on Robinul to dry them up. This is very effective from an outside view, but once we saw what we did with the scope, it appears to not be effective either. and then there are the potential side effects of the Robinul..... which brings us to another major issue....
His stomach emptying results came back, and it could have been better news. It turns out, his stomach is digesting his food at 30% the rate it did last year when we took the test- could be due to two things, a side effect of Robinul (slows down the movement of the food in his stomach), or a break down of the nervous system- removing the glands would potentially allow us to take him off the Robinul, and eliminate this.....
With Chaser going down to Mayo on Jan 7th to get his Botox injections, he is already going to be put under general anesthesia, they are suggesting we remove the glands at the same time. Again, we both need to know this is the last option. So I requested we do another scope- maybe Chase had a bad day...this was the first time we had seen his voice box covered. I requested another Chest CT scan- If his lungs are showing damage from aspirating, there is clearly a problem....if not- then maybe its not as bad as this one shot in time showed. I requested another stomach empting test....again, this was one time, want to make sure results are same again....and we requested to talk to the surgeon again face to face to reiterate our position and be positive this is the best solution....and possibly only remove one gland- She said she would see what she could do. 10mins later, the phone rang- "we have you schedualed with the surgeon at 8am Monday morning! Man gotta love Mayo. So we are back Monday morning to discuss, and give us something to think about over break. This is by far the biggest decision we have been up against since his accident. I hope the Big Guy slaps us in the face with his plans!
Have a great weekend.
God is Good!