Grays 2013

Grays 2013

Saturday, September 6, 2014

Follow up......

Today feels and sounds like every other Saturday in our house, but it's not. My heart is heavy and I am severely sleep deprived. I have not slept but a few hours each night of uninterrupted sleep in 4 days. Here is what we know.......
First Erick's health has declined.  Yes we knew it would but unless you have watched your child's health decline knowing there is nothing you can do to fix it I cannot explain the way that feels. Fortunately there is hope. We met with his transplant doctor and she wants to present his case to the medical review board on October 1st. The medical review board is made up of a team of doctors and Erick's transplant team that consist of social worker, nurse, psychologist, surgeon, child life specialist, and I am sure I am missing someone but you get the picture. They all have to be in agreement that he is ready to be placed on the transplant team. His doctor could not tell me for certain that he will be placed on the list but she felt very strongly that it would happen.
So in the meantime  he has to do physical therapy twice a week, see a psychologist, see a dietician
, see the surgeon and redo some test all before October 1st. I have mixed feelings about this. On one hand I am glad the wait to get on the list to wait for a transplant is almost over but on the other hand I am a nurse and I know the road will be difficult but the other side could  be beautiful and this child that I have only known as a sick fragile child could have the ability to run and play without getting tired. He can play the sports he loves without limitations. So we begin our journey back and forth to Texas Childrens. If anyone wants to see or talk to me you are more than welcome to join me on the road.

Then there is heart hurts. Erick we knew what was coming and we knew it would be hard and we knew so much but this completely blindsided me! Let me begin by saying I know what epilepsy looks like in the life of a child because I lived with a brother that has epilepsy. I know he can live his life with seizures and have a somewhat normal life with some limitations. I also know my child can overcome those limitations.

So from all that you can come to the conclusion that Zach is having seizures. About 15 minutes into his EEG they came in and told us the neurologist wanted to see us before we left. Everyone knows what that means.......they saw something and it was not good. Zach was having multiple small seizures while he slept. He probably has been having them for a while. But we have no way of knowing how long. Our next step is to do an MRI to rule out anything big. And he has to start on seizure medication. Those of you that know me know how much that is killing me. These are hard core drugs and I hate them! But he is having multiple seizures at a time. Within the 20 second strip the doctor showed us he had 2 seizures one lasted 8 seconds with a 2 second pause and then another that lasted 12 seconds. And he said that was consistent throughout the test. These seizures are only happening when he sleeps and he has no idea so he is like what is all the fuss about I feel fine. And he does and he is acting fine. There have been no cognitive changes in this kid. We just know now that he is having seizures.

So it is not the end of the world. Again the nurse in me knows all too well all the things that could go wrong with seizures. So I have not slept and knowing that I will have to sleep I spent a few hours on google last night looking for a monitor. And after spending a small fortune on yet more medical equipment I see hope that I will one day sleep again.
So how are we doing?  We are a little battle worn. But there are so many positives and so many ways God has shown himself through this. I have had awesome friends rally around me. Praying for us sending encouraging messages.

Zach's cognitive ability has not changed. Erick has hope that he will one day be able to be a normal 8 year old boy and Isaiah's seizures have been able to be controlled with  a rigid sleep schedule (his seizures are different and not as frequent).  And so far Malachi is only requiring some speech therapy.
I woke pup this morning to a very loud house full of the laughter of 5 energetic boys (one of Zach's friends had a sleep over) and for that I am very thankful.
My super heros!
I know that no matter what happens God is still God!  Without my faith in that I cannot survive this. I will not let fear steal my joy of today!  I chose to still follow Christ......

1 comment:

  1. So many thoughts running through my mind... I wish I could give you a big ginormous hug right now. You are an awesome mama and your love for your family shines so bright. I am praying for you and all of your kiddos, precious Susan. Give them big squishy annoying hugs from me! Praying for much peace, wisdom, rest, and strength for the journey ahead.