About a week ago after all of the labs were drawn we finally got word that Ethan was indeed on way to much medication. His levels of depakote were toxic. So we took him down to 375mg in the morning and 500mg in the evening. His energy has started to return in the last several days, and he is even a bit happier and his seizures are a little better. He is only hitting the ground about 10-15 times a day, but the absence seizures are every few minutes. Way to many to count. :(
Today as we entered Seattle Children's hospital (for the 3rd time in 2 weeks) the check in clerk said to me, "Hahn right? This is Ethan?" In shock for a moment I wasn't sure if I should be happy that she remembered us, or troubled. She checks in hundreds of families at the door each day. "Since you are here so often I can issue you name badges that are good for six months. That way you don't have to stand in this line each time you visit." --Needless to say we can now sport our name badges at home if we want to.
After everyone was checked in we headed over to the lab to have his blood drawn again. He is such a trooper. Bob gets him all excited about picking out the color of the bandage before we even go in, and the then the blood draw is usually tear-free. We won't hear anything on the results until next week. I know his ketones have been low, but I really think that the depakote is preventing him from producing high ketones. I praying that we can get them back up in the 5 range. Last week he was at 3 and the seizures are showing it.
Also he is losing weight. We may have to increase his calorie count, but we know that he is very calorie sensitive. The more we increase the worse the seizures get. However now that we have gone down on the depakote he is more active and maybe he needs more calories? Not sure.
Would you all please be praying with us over the next serval weeks. It is so hard to watch him go backwards. Over Christmas he was doing so well. We even thought we saw some seizure free days. Now we are not sure what is going on. We need to hear from God so we know which direction to go. At this point he is puzzling the doctors. We have had several phones calls from them, and each time they say, "we have had emails going back and forth between the team members all day and we are all puzzled."
Father, I ask you to please put your loving hand on Ethan's brain. We want healing. Please guide the doctors as they search for the answers. Bring things to light that need to be helped. Show them which path we should take. Thank you for being in complete control. We trust you in everything, and thank you for each and every moment that we get to spend with this child.