Today our family visited two very important specialists: ENT & Genetics. We started with genetics where we signed consent for Exome Sequencing. It is a confusing topic but from what I understand they will take blood samples from Lauren, Logan, Joel, and I and send it to a lab. They will then run Logan's DNA looking for mutations which may explain Logan's symptoms. They will use our blood samples to compare with his as needed. The genetic counselor said they will first test for about 4,000 genes that are known and if no answers, they will run it for genes that have been identified in the human genome but go unnamed and unexplained as to what they are. I still don't quite get it but what I do know, it will take around seven months to get results. We may come away with a defined answer, an undefined answer, or nothing at all. What I know is, we are knocking down a lot of time searching for a diagnosis by doing this one lengthy test.
Both the kids did great for their blood draws. Lauren was especially brave. She had no idea it was coming and had no clue what it was for. She didn't even ask why. She just kept saying "no more pointies mom". She is so amazing and doesn't even know it. I hope someday she understands how amazing her gift to Logan was today.
Next we went across the hall to see Dr. S, ENT. I scheduled this appointment to discuss the possibility of going ahead with ligation of Logan's parotid glands and excision of the submandibular glands. In English this means tying off the glands above the mouth and removing the glands under the jaw. The goal of this procedure is to decrease the amount of saliva he produces in order to decrease the amount of aspiration. Dr. S said it is about 70-80% effective and results are seen quickly. There is always a risk of infection for which they would put him on antibiotics. Post op pain which is generally controlled after discharge from the hospital. He said there would be a one or two night stay.
Dr. S. commented that he was surprised we waited this long! I was a little confused as he did not seem to have an opinion either way when we discussed this in April. But I can say I am glad we gave it a good try with medication interventions first in order to know that we were ready and in the right mindset for this surgery.
We also discussed the chances of the procedure not working. Even with removal and tying off of the major glands, he will still have all of the salivary glands in his mouth producing saliva. The discussion then moved to a tracheotomy. This would be creating a new airway through his neck where he would breathe from to help significantly decrease aspiration problems. This remains a last resort but is still on the table. He said we should know in 4-6 weeks after the salivary procedure if it worked and then can proceed from there.
So after the discussion, Joel and I decided to go ahead with the surgery. We hope this will improve his quality of life, decrease the need for oxygen, decrease the suctioning, as well as decrease the pneumonia's. Temporary pain for a hopeful long term gain. I feel as though we have been doing the best we can to manage his care and do what is best for him. We have been so fortunate to have time to make these decisions. That is not a luxury many parents have with sick kiddos.
Surgery is scheduled the week after Thanksgiving. Please keep Logan in your prayers in the coming weeks. We need to keep him healthy in order to get the surgery. He will also need your prayers to guide him through his surgery and recovery. I can't imagine how scary these things are at his age. And lastly, could you throw in a couple of prayers for Joel and I? We could use a little uplifting too! These times tend to be the hardest.
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