Monday, March 5, 2012

Visit to Arkansas Children's Hospital

We started the first of March in the Hospital. Naomi had a 24hr video EEG scheduled on the Neuro floor at ACH. Our Neurologist wanted us to go in for a long EEG so that we could hopefully catch some of her seizure activity to see if they have changed into infantile spasms . Watching her get hooked up to the EEG was really hard, but the ladies that were hooking her up were really fast and really nice, so that made it easier. Noah went with us to Little Rock, we didn't want him up there to see Naomi scream, so Doug took him downtown to the Rivermarket and they went to eat and walk around.

That night Naomi and I stayed up at the hospital and Doug and Noah stayed at a hotel. She had a few seizures that night, so glad they caught them on the EEG. I'm so sad that I was wanting her to have a seizure, but just so that they could find out what kind they are. Naomi got some rest but it was hard with the tech's checking her vitals every few hour, and the 5am blood draw. They sure do know how to draw blood on babies, only one stick they are amazing, everywhere else we go it takes them three times. We had great nurses though, some of the ones we had last time we were in the hospital. They took such great care of us. I really felt the Lord's hands over us during that time.

The next day Noah and Doug got to spend it at the Children's museam. Noah loved it, he had such a blast! I'm so glad they got to spend the day together. And I'm so thankful I got to have some Naomi time.
The Neuro team came in and talked to us about her EEG findings. They said she is having complex partial seizures that change into infantile spasms halfway through. They said her phenobarbatol level was very low so they wanted to go ahead and take her off of that medication, and they wanted to increase her Keppra. Our Dr. here in Lowell consulted with them over the phone. She really likes to use Keppra because it doesn't have any severe side effects like all her other medication. Also we talked to them about starting her on the Ketogenic diet, which is a high fat low carbohydrate diet that burns ketones for energy. We talked to the nutritionist about starting the diet, which would be a special formula called Ketocal. She said they have a lot of children on the diet that have very good results with seizure control, much better than even medicine. We are considering the diet, but it does have some side affects as not being good for the kidneys. Also she has to be in to hospital for a few days when we start the diet so that we can monitor how she handles it. We are still considering trying to see about going to the Mayo Clinic so we are not sure about starting the diet yet

. We have lots of things to pray about. But we are resting in the Lord's arms, he is holding all of us, knowing that he has the perfect plan for Naomi and her care. My sister shared this with me and I really enjoyed it, "When you encounter unusual circumstances and problems are are bewildered and feel like collapsing, just remember, "Why not Praise?" here is the golden opportunity. If you offer praise at that moment, God's Spirit will operate in you, open doors." Praising the midst of everything seems so impossible, but thanking the Lord that he is still in control.