I'm tired. I'm done. Done with this. All week we've been talking about getting Matthew to Minnesota, getting him the care he needs; getting him on a plane to Minnesota. But today, those plans all fell to pieces. I found out today that the doctors here in Omaha have not been talking with the doctors in Minnesota as I had previously thought they were. They even went as far as to tell us to get plane tickets today for tomorrow's expected trip. But as the day wore on, the truth came out. There has been a large lack of communication. I am frustrated by it. Frustrated seems to be a word I type alot lately. We do not know what is planned for tomorrow. As of right now, we will not be traveling by commerical plane. Just as our neurologist was telling us Matthew was "too stable" to go to Minnesota, and that we should wait to go to Minnesota until we have some time to see what these new medications will do, he noticed he was having a seizure. I hadn't had a chance to tell him yet that we had seen a few of these today. He immediately ordered another EEG. He had 4 more of these "events" The doctor read the EEG and says he thinks he's having seizures. He's not sure if all 4 are seizures. When I asked him about the plan now with this new information, he tells us he is too "unstable" to fly. They have given him MORE seizure medication. They wanted to give it by IV, but Matthew has no IV access. They tried, without success, to get an IV in. So they have given the medication in his g-button. It will take longer for the medicine to act in his system.
I'm not understanding the logic by this. One minute they don't want to see him in Minnesota because they are being told he is stable; the next he is too unstable to fly.
I'm tired, and irritable and not okay with going home or staying in Omaha. All I want is to go and get the care that Matthew needs so we can go home and return to our normal family schedule.
I have not gone into all the details of today; it would takes pages, and I am choosing not to rehash it, again. I've visited with the charge nurse and the head physician tonight and I believe we will all be having a conference tomorrow. We need to get on one page. Right now the epileptologists in Minnesota are also very frustrated that these doctors do not have things in order here. Matthew deserves better.
"I know the plans that I have for you, declares the LORD. They are plans for peace and not disaster, plans to give you a future filled with hope." Jeremiah 29:11