Today has been pretty uneventful. Matthew started having a little bit of a hard time breathing this morning and ended up back on oxygen. The amount of anti-seizure medication Matthew is on makes it hard for him to be awake and also to be strong enough to cough and clear his airway. So all the extra "stuff" he has in his throat has been our nemesis. They made a decision to but him back on the medicine to help with his secretions; and that helped temporarily. Around 4, the crud was back and he was coughing but couldn't keep his airway clear enough. I know when I have a bad cough that it feels better to sit more upright. It's hard to sit upright for Matthew though without lots of support, and he ends up sinking down in the bed and being uncomfortable. Suddenly, I remember that I had seen Matthew's floor positioner out in the car earlier today, so I asked if they thought it would help. The nurses said it was worth a try and I ran to the car and got it. Within minutes of putting it in his crib and getting him seated; his oxygen levels were up, he was more comfortable and he fell asleep. And then we both took a 2 1/2 hour nap. Yeah for us!! He has been so comfortable ever since. He still has some mucous to deal with, but it isn't a constant thing. We're weaning him back off of his oxygen and we're checking blood levels again tomorrow for his seizure meds. I think he is on WAY to much; and that is part of our problem. We are still seeing some twitching activity, but not a lot and I'm not making too big of a deal about it; because I really don't think we can accurately treat it until we get to Minnesota. I can't tell you how badly I want to be there. I know we will get a solution once we are there.
I don't think because of his oxygen requirements today that we'll be leaving tomorrow; but perhaps Friday. I will visit with his neurologist tomorrow to see if perhaps we can get tentative plans in place for when we are going to Minnesota, so I can get plane tickets. I'm partially hoping we can just go when we get dismissed on Friday; but also partly wanting to have the weekend home with my family (although I work all weekend) and then off early next week. We'll see what they say tomorrow.
Thank you again for all of your prayers and support. We couldn't do this without you!!