Thursday, November 5, 2009


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


Anonymous said...

I love that verse Jill. I'm sorry to hear about the frustration. It seems like you have had way too much of that lately. I'm sure Matthew is frustrated too. He is so lucky to have you there fighting for him. Take care of yourself. I hope to see you soon.
Kim B

Cheryl said...

Please hang in there! Medical care seems to leave A LOT to be desired and it gets worse each time we have to go. Praying for you.

Kristen said...

I hope the conference meeting serves highly effective to get everyone working on one page, with Matthew's best in mind! Your frustration level must be through the roof by now!! It's got to get better! Matthew has so many praying for him. God's listening, I just know it!

Tyler said...

Hang in there, Jill. I am praying that the doctors begin to communicate and will soon find a plan that is BEST FOR MATTHEW. Oh and I love the "Praying for Matthew" button.

Michelle said...

Oh Jill...Hugs and more hugs! There is just nothing like the frustration that doctors can produce. If your instincts are to do it, then tell them to put him on a helicopter and quit messing around. If they can't take care of him there, then they need to get him to those who can. You are an awesome Mom and Matthew couldn't ask for better.

Lisa said...

I am so, so sorry Jill. Frustration doesn't even seem like a strong enough word for what you are dealing with. If Lorelai were there she would say that this is 'unfair'....that's one of her favorite words to throw around when life isn't going as she would like.

I would most definitely say that what you, Matthew, and your family are going through is 'unfair'. Lorelai would even throw a tantrum about it....that's for sure. Maybe you should too. Maybe then the doctors would get their act together and start making sense and communicating with one another.

Good luck with the conference. And remember....sometimes throwing a tantrum works....just ask Lorelai.


Thinking of your family, always.

Carla said...

Jill, I am so sorry for all that you and Matthew are going through. I am angry for you. I will pray for your peace, for Matthew's well being & for the doctors to get their heads on straight.

raintree's village said...

Well, I'm frustrated for you. How about that. Right now, I'd like nothing better than to march myself into that joint and give someone a piece of my mind.
Please, let us know if there is any way we can help. I know you're stretched really thin- so really- let us know.
Praying for you all!