Matthew was weaned from his sedative last night at 6pm. He awoke around 9 pm and he had a rough night. He was awake; but the doctor didn't want to extubate him (I won't go into any details on this other than we had a very frustrated nurse and mom by morning). So all night he coughed and cried and fought the tube. Even though he is intubated, you can tell he is crying by his facial expressions. You can't hear it, but you can tell. So, I didn't sleep well because I was up and down with him trying to comfort him. I was happy when morning came because I was sure they would pull the tube. This morning, his lab work showed that his phenobarbital level (a medication used to control seizures) was still low in his blood. It was a little confusing to the neurologist because he was getting this medication twice a day orally and also daily IV boluses. His blood levels, though would not go up and had even decreased today. So they doubled his IV dose. Immediately after that dose he feel asleep and was comfortable. I was talking with the nurse shortly after she gave the IV dose of phenobarbital and told her that the doctor had also increased his oral dose. She said...what oral dose? I told her that he should be getting phenobarb in his button twice a day; and she said he hadn't been getting this. So upon further evaluation; the doctor had not written the original order, but had written that he had started it in his progress notes. That could be a big reason why we are still seeing these twitches. I will be perfectly honest with you when I say that I don't believe in my heart that all of these things we are seeing are seizures. I could be wrong; but even the nurse today said that she doesn't think they are seizures. Another big reason I want to get to Minnesota.

So all day today the doctor has said that if he wakes up enough, we will extubate him (take the tube out). He has slept comfortably all day, which is comforting for me to see, but I still want the tube out, so I wish he would wake up. He is on what is called CPAP, so the ventilator is essentially off, and it will only click on if he doesn't breathe for 20 seconds. When he doesn't breathe, it alarms and the ventilator turns on. It did alarm once today when he was sleeping really hard, but he was just breathing shallowly, and was able to keep his oxygen saturations up, so they aren't even concerned by it.

I was able to get a nap this afternoon, as I could tell that my patience was growing thin, and I knew that I was sleep deprived. The doctor on tonight has promised me that whenever he wakes up, even if it is three AM, he will wake up and come extubate him. He has been our favorite doctor so far, so it is comforting to know he is on tonight. I will try to head to bed earlier than normal tonight, so if he wakes, I'll be able to be up with him.

Thank you all for praying. I'm sorry it took so long, but earlier I was not in the right mind frame to update. I will update again tomorrow. We have a new neurologist on in the morning and intend to have an in depth conversation about if/when it will be applicable to transfer him to Minnesota.