Little Dude is completely wiped after a full day down at Mayo. Although it was an exhausting day, it was a very preductive and educational day for us all around- from head to toe.
Starting with the head- we didn't have a schedualed appointment, but we have been concerned with Chasers increased startled reactions lately, so we requested a visit with Dr. Patterson- his neurologist. As always the Big Guy made it happen, and they squeezed us in. Dr. Patterson did some probing, pushing and made some loud noises, and determined it was the same reaction that we had seen in the past. With no signs of seizure activity anywhere present, no EEG necessary! Uffdah! That was a huge relief! He also commented that his involuntary reflexs seemed normal.
We met with the ENT team to discuss his swallowing and secretions. They did a scope down his nose and checked out his throat. We got to watch as Chasers saliva danced around his voice box with no protective reaction from him what so ever. (That explains why we haven't heard a "Go Sioux" from our little man yet!) The good news is it was clear enough to witness this, as it sure wasn't last time. The bad news, is he should have been coughing to bring his secretions back up and clear out that part of his throat. We have been using Robinul to thicken and dry up his saliva, but apparently it is not completely effective. We discussed other options, one of them being removing a couple of the salivary glands to decrease his saliva by up to 70%- unfortunately, this is not reversable, but has been done on patients that were able to communicate and live virtually normal lives- The AREO Digestive team is going to discuss on Friday and let us know what they think is best. Although it was not great news to hear, it was a blessing that they caught it and that we can do something about it. The downside to doing nothing is taking more chances that he could aspirate and get pneumonia again....and again-.
We then went to GI dept and took a chest xray to check his the Nissen procedure he had done on his stomach last year. They injected some barium into his G-Tube to fill his stomach and watched on the xray as it moved from his stomach to his small intestine....?(Im not a Dr yet, forget where it went )- but anyway, it was where it was supposed to go! No problems with the Nissen procedure.
Then we met with Dr. Brandenburg to discuss his tight muscle tone. We decided to up the dose of Dantrolene to 3x's a day, and she is possibly adding more botox to his procedure in January- depending on if we have the salivary glands removed, this will allow more botox to be used on his arms and legs.
We then cruised over to pick up an at home sleep study machine to use on Chaser tonight. This will measure his O2 and heart rate througout the night...and as a bonus, we got to sit in a 20min class on how to run it and use the velcro that comes with it!
We didn't directly get an answer on the constant throwing up, but we discuss some possible causes-
-Robinul...side affects can be vomiting and nausea
Everytime we make this trip, we meet people that have been following and supporting Chase. Thank you all for your continued support! And a special "shout-out" from Chaser to Heidi! Was great to meet you.
Lisa and Chase are back tomorrow to return the sleep study recorder, and to meet with GI to get results from the stomach emptying test the did yesterday. Lets hope we get some more answers. More to come.......
Have a great night.
God is Good!