Crossing A Line

For several weeks now, Macayla has been sleeping more and less responsive. At first we thought it may have been related to medicine changes, but it does not seem to be now as her initial levels were low and she even perked up a bit after being on the meds for a while. We get about six hours of awake time in a twenty-four hour period at best. Even then, she can be slow to respond at times. But she still smiles often and she still seems to recognize our voices.

Unfortunately, she started retaining fluid in her feet this weekend. We are not really sure why, but she has never done this before. The swelling is minor right now and does not seem to be causing any discomfort. Overall, we seem to be crossing the line over into the vegetative realm. It is hard to qualify or quantify a vegetative state in these cases according to our neurologist. He told us that usually a vegetative state occurs when someone suffers a brain injury that causes a coma and then they come out of the coma into a vegetative state. Macayla is coming to it from the other direction. She is descending into a vegetative state and doing so slowly. So, she may be out of it but still give us smiles. It is not like a switch is suddenly going to be flipped and she change her status. Instead, the times we have with her awake will grow briefer and further apart. Of course, we hoped we would never have to cross this line. We hoped Macayla would stay alert until the end, but that may not be as good for her. It is hard to know for sure, but being vegetative could make her less aware and that may make things less frightening for her when they come. How I wish I could just make it all better for her.

The latest change that seemed confirmed for us last week was that she had multiple little (short in duration) seizures on Wednesday that involved her eyes, arms and legs and at the end of each one she would gag as if someone were sticking their finger down her throat. We suctioned but got nothing because there was nothing there. It confirmed for us that sometimes her gagging is seizure related. Either the throat muscles are contracting with the seizures and closing her throat, or there is a loss of signal and it causes the muscles to go floppy for a moment. It's hard to know, but we are starting to see some differences between gagging that is caused by mucus and gagging caused by the throat not staying open.

We appreciate any prayers for strength and comfort.