Saturday, February 27, 2010


happened this week. We're sitting in Dr. E's office. Jacob has a rough time after taking the ride down to Children's hospital. The suctioning is intense, the breathing is intense. Dr. E is concerned, worried.
And for the first time in all these years, Dr. E is recommending a trache. Something that she has so fought against despite severe sleep apnea and respiratory issues. "As Jacob is changing, I have to change", she says. It seems so simple, but for us it's a major rethinking after having settled on that the trache would just not happen for Jacob - for better or worse.
The thinking is that the trache would give Jacob comfort. It would not be to extend his life. It would be an easier way to suction him as Jacob's gag reflux is not as strong any longer. It would be a way for Jacob to get some relief as he has obstructive breathing during periods of the day. It would be a way to protect his airways, and avoid pneumonias. It would not be to replace his own breathing.
It seems so simple, but it's so not simple. I am hearing from Jacob's neurologist that Dr. E is really struggling with her recommendation. It's not easy for her, it's not easy for us. Jacob's neurologist gives us pros and cons, and the whole conversation puts Jacob's life upside down. When Jacob's neurologist should be having a Friday evening with her family, she is talking to me on my cell about life and death. About the mitochondrial kids she has seen dying last year. About how scared she is about the surgery for Jacob. How we all would regret, if something went wrong during the surgery. How Jacob's Belgian doctor has his opinions on the matter as well.
How we feel overwhelmed to once again having to make the impossible decision. How this decision needs to be based on Jacob's life line that none of us has. How this decision needs to be made based on Jacob enduring another surgery or not. How we can balance Jacob's comfort with the cons of a trache.
Our heads are spinning, day and night. Not knowing what to decide. Not knowing what is best for our son. Having to still put faith in our own best judgment once again without knowing all the answers or outcomes.
We know we can't ignore this. This is coming from the one doctor who knows Jacob better than any other doctor. The one we trust the most. We know she struggles, but she did bring it forward. I need to talk to her on Monday to see where she stands after a couple of days of thinking. We're also going to the sleep clinic next week to see what a CPAP could do for Jacob, would it be enough? At least for a while? We're then having another meeting with Dr. E & Dr. C the following week to discuss the trache further. We also need to get opinions from ENT and anaesthesia regarding the risks of a surgery for Jacob. If Jacob gets worse this week, Dr. E wants to admit him right away to quicker decide on next steps.
There are many question marks, and no right answers. We're once again putting one foot in front of the other trying to make sense. In a week, I am supposed to speak at Jacob's school's ball. I am hoping I can do that with a little bit more confidence about what to do next.
Hoping for clarity,

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