The big reason we ended up in the hospital is Jameson has something called complex sleep apnea.. This is a combination of both obstructive and central apneas; obstructive being caused by structures in his airway that relax and obstruct his breathing, and central apnea being when the brain actually stops telling you to breath. The part of the brain that controls unconscious functions like breathing, heart rate and temperature is an area that Jameson never fully developed due to his genetic disorder. So because of that he tends to hold his breath when he's sleeping and that's what causes him to desat. These desats are when the amount of oxygen in his blood goes down to a dangerous level. A normal healthy person will probably have a blood oxygen level of between 95-100 throughout the day and night. When Jameson desats, he drops down to the 60s, 70s or 80s and his sleep study told us he was doing that 50-100 times an hour depending on how deep he was sleeping. Because of that, we opted to do the airway surgery to help with his obstructive apnea and at least tackle half the battle. The surgery included removing his tonsils and adenoids, shaving down his trachea and epiglottis, removing part of the turbinates in his nose and doing Botox injections in his salivary glands. It was a tough and extensive surgery but Jameson did amazingly well. The pain ended up being a non issue it was dealing with the central apnea and lungs that ended up being the reason for our long stay.
As of today, we are still struggling with the right things to do for him. We've got him set up on a BiPAP machine now that he is supposed to wear at night and during naps. We have found this to be one of the most difficult aspects of the journey. He doesn't want to wear it (understandable) and I can't explain to him why he needs it. When I try to keep the BiPAP on all night he doesn't sleep well and that in turn causes more seizure from lack of sleep. But without the support he is still desating all night. So for now we are still in limbo on what to do and how to proceed. The doctors and palliative care team at Mayo talked to us a lot about regression and decline while we were there and what that could mean for him. I haven't fully accepted that yet and I still don't know how to wrap my mind around it honestly. I've asked them, how will I know when I'm pushing him too hard? And there's never a right or easy answer for that. I think we will just know.
I hate for this blog to sound sad and depressing because that is not Jameson's life to me. I try my best to make his life only about love and happiness and smiles. I will continue to strive towards doing that as we go through these battles. Today may feel dark but tomorrow could be a beautiful sunny day and I try to cherish every one of those happy days. 😊
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