Today, Matthew had been doing so well since Friday afternoon,(he has actually been seizure free since friday) that they decided to it was time to move him back up to the normal floor and out of PICU. We arrived on 4th floor around 3pm. At 3:30 I looked over and Matthew was twitching. It was short; about 45 seconds. By 5:00 he had had 5 of these less than 1 minute twitches. Then around 5:30 he had fallen asleep (or so it looked) and then his o2 saturations dropped; dramatically...like to 74% and they wouldn't come up. We got the attention of the whole 4th floor and a few doctors too. Scared me. His pupils were still reactive, but pinpoint small, and he was not arousable. By the time we got him back down to PICU around 6:15 he was awake and smiling. Bizarre. I was comfortable being back where we would receive more one on one care, though.
All was looking well, and they were weaning him off of his oxygen tonight, we went to rounds and he was smiling and happy. Around 10:00, he did it again. Looked as if he was sleeping; perfectly still, and his sats dropped again to the low 70's. No one is quite sure what is happening. This is another reason we NEED to be in Minnesota.
Speaking of Minnesota, the saga goes on. Our neurologist I think is painting a much better picture of Matthew to his epileptologists than what is really happening. He told them we had been stable all weekend. Due to this, they don't want to see him until Thursday. So we sit. Tonight around 5 pm, I decided to take matters into my own hands. I called the doctor myself. I told him what was going on was unacceptable. I told him Matthew was starting to seize again and that it was important that we get him up there. He told me there was nothing we could do tonight and that they will address it in the morning. I intend on calling again in the morning. The squeaky wheel gets the grease.
I'll be honest, I'm scared. I feel trapped. I'm not sure we're being listened to. I feel like if we don't get there soon, it could be bad. BAD. It feels like we've let this go on too long. I'm starting to be very nervous of what Matthew's future is going to be; especially if something doesn't happen soon.
Please, PLEASE pray that God will make the doctors very acutely aware of what is going on here. Pray for Matthew. Nurses ask me how much of Matthew's baseline activity we are seeing. I'm telling them 10-20%. Pray that his little body holds on, and that his little brain is protected from the storm of seizures. And please pray for me and that the right words come from my lips. That everything I do glorifies God.