Wednesday, March 3, 2010


Jacob is in the sleep lab tonight. He is having his 9th sleep study in his life. They hook him up to all sorts of equipment to monitor what he is truly doing in his sleep. It starts at bed time, and runs until 6-6:30 am in the morning. Dr. E requested the study to get more answers on what to do next. I have also heard that a CPAP or BiPAP won't be paid for by insurance, if you can't back it up with a sleep study.
The first sleep study we ever did was interesting. Jacob had just turned 1. There was a suspicion of sleep apnea. We got in unexpectedly after someone cancelling their study. I had been in a management meeting all day resulting in my brain being completely dead. I had no expectations of the study, and thought that Jacob and I would simply go in and get some sleep. Jacob didn't sleep all night, and the same was true for me. In the end, they removed the EEG to get him to fall asleep. He was seizing all night for the first time in his life, and rather than packing up in the morning, we got admitted to the hospital to treat Jacob's seizures as well as his first pneumonia and RSV. The spinal tap also revealed extremely elevated lactate acid, and was a first signal of mitochondrial disorder. I remember thinking that I immediately had to quit my job when I found out about Jacob's seizures. How could I simply do anything else than watch over his seizures? Oh boy, have we had a journey since February of 2007.
Tonight, I sent Joakim in with Jacob to have them do their first sleep study together. As I went in to Jacob's last sleep study in August of last year, I met a friend from our support group who also had a scheduled sleep study for his daughter the same night as Jacob. The dad said that he always does the sleep studies, so big sister gets a night with her mommy to herself. I thought it was a brilliant idea, and decided tonight was the night for us to do the same. Sarah and I had pop corn and watched a movie before it was time for bed.
Sarah is pretty involved in the trache discussion. She has lots of questions about the trache, and how it will work. She is afraid of what it will do to Jacob, and once more feels that her world is threatened by something that is outside her control. We talk about it, we cry about it. She has her own workbook these days where she writes down her own observations, and I realize she has exactly the same fears and hopes as we do. She is afraid of Jacob dying, and she wants to see a cure for mitochondrial disease. I am sometimes sad that she even knows how to spell and even worse know what that word means at age 7...
We're not closer to a decision about the trache. Maybe the sleep study will help us? Maybe not. I think we all can see the benefits of the trache, if it wouldn't mean such an invasive procedure, and everybody knowing what a big risk surgery is for Jacob. Which alternative will give us the best outcome for our little guy? I really don't know. Pondering back and forth, back and forth.
In the middle of looking for answers, I loved that Jacob started music therapy today again. I saw my little guy coming out of his shell over and over again as he was intrigued by the instruments and songs. Vocalizations and smiles were back again. YEAH!
Tomorrow, Joakim and I will escape for the day. We realized that we didn't have any appointments AND a nurse on the same day! We'll go up for some skiing as Jacob will hang out with his nurse, and Sarah will play with a friend after school. What a treat, and hopefully a good way to clear our minds and hopefully see things in a clearer light!
Love, Maria.

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