Friday, June 14, 2013

Sleep Study and Hematology Update

Sam has had two prior sleep studies. His initial sleep study was just before he turned three, as Matt had found him a few times, gasping and grey when he was sleeping. We were given an apnea monitor at home that went off often. When they did the initial sleep study it was determined that he had severe obstructive sleep apnea, and therefore he would need his tonsils and adenoids out. That initial surgery was in January of 2010. Last year we started noticing that he was getting restless again in his sleep and was requesting four or more pillows. He started coughing a lot while sleeping as well. We were sent to an ENT, who did a procedure (I don't know the name) in which they sprayed this numbing medicine in Sams throat and nose, and the doctor took a small camera up Sam's nose and down his throat. He was looking for anything that could be causing the difficulty at night. Apparently adenoids can grow back. We are praising God because Sam's have not. But unfortunately the doctor believed he saw something else concerning in the back of Sam's throat. The doctor believes that Sam has an "enlarged lingual tonsil". Apparently this isn't a super common problem in young children, and it is quite a big deal to fix them. A lot of times children need to be intubated in the post op period while the swelling goes down. All that to say, we had another sleep study. Sam was such a trooper through it all. They attach somewhere around 40 different sensors to various parts of his body. Many of them being on his face and head. But there were also two belt type monitors on his chest and abdomen, sensors on his legs, and his toe. He did so well! While we were at Children's we also met with our hematologist. She is just phenomenal. I feel so fortunate to have her, and her physician assistant Jennifer on our team. Dr. Grace is wonderful at explaining everything and answering any and all questions that I have. Children's had been working on a very specialized test for the last several years, that they believed would help them better determine what exactly was the problem with Sam's platelets. But unfortunately the test didn't give them any ideas. The only thing that we know for sure is "Sam definitely has a bleeding problem. His platelets absolutely don't function appropriately, but it is so bizarre I have never seen anything like it..." And on and on the conversation went. We unfortunately just don't have any new information than we did before the test. His platelets just don't work right. And because they don't know why or how they aren't appropriately functioning, there isn't really anything they can do that will help. So essentially we just wait for the crisis and then have the action plan. This of course is not at all something I like to hear. I want a preventative plan not a crisis plan! I am so thankful for Dr Grace though. She has written up an action plan for us to bring to an ER or have in the school etc in case of emergency of what needs to happen. She has also written prescriptions for us to have specific meds on hand that will help in case he starts bleeding at home, in order to avoid the hospital if possible.

No comments:

Post a Comment