Rachel is doing better today. She was awake for most of the night - no surprise, because she literally slept ALL day yesterday. I did get to dress her in some of her 'new' sleepers I picked up at the used kids store nearby. I know this sounds strange but when she almost died yesterday, one of my thoughts was, 'oh how sad, I might not get to try those clothes on her..' It is weird sometimes, the things that cross my mind in the middle of these situations. Yesterday during her spell, there was some music in the background that reminded me of a movie, in which someone gets word of a death. And it made me laugh. Strange humour relief. I have talked to other parents that go through this and they say the same things. One parent told me that when her daughter was seizuring, she was annoyed because her husband had put her down on the floor and she was covered in sand from outside. I guess it's a 'new normal' that I wouldn't have understood unless we were in it ourselves. Still it is a 'new normal' I would rather live without. There's alot about myself and my ways of dealing with this that I don't understand. But I do know that with each 'crash' we experience afterwards, I need to lean on God for strength - or I would be so lost. I don't know how else we could keep doing this over and over.
I just talked with Dave on the phone. He walked Rachel over to the Hospital for her Dr. appointment. She just had her echo. As usual, she could only see one pulmonary artery. It is likely the only source of blood flow that she has to her lungs and it's diameter is roughly 1 1/2 - 2 milimetres. I don't remember what it has been before. But that is pretty tiny! Yesterday during her spell, the attending doctor told us that medically speaking - it is INCREDIBLE that Rachel is able to recover from these spells, given how minimal her blood flow is when she is 'ok', nevermind the effect that having no flow to her lungs does to a body. (if there is any flow during the spell, it is extrememly minimal). God could still take her peacefully in her sleep (what we ask for!) but it does look very likely that this is the way that she will die. There might just be one spell that will go on too long for her body to handle. I really need to keep leaving this in God's hands and trust that whatever the time, or way that she goes - that He will be with us in it, helping us.
One thing that comforts me is that she is likely not in pain once she is in the full blown part of the spell. The doctor explained the reasoning for this yesterday - something about how her brain kind of shuts off, but I forget now. She also said that her hard breathing is her body maximizing on the tiny oxygen she is able to get in. (her glotis closes too) But she is likely not conscious of what is happening. I find the stage just before the spell really starts to be the worst - because it seems to me then, that she is very uncomfortable and her cry is so strained and high.
I was intending to pack up this morning but we just got word that we can stay longer! There have been some cancellations. This is good for us because we are running low on respite hours. We will stay until tomorrow morning for sure, and maybe longer.
Tomorrow night is her Birthday party!!!