Decisions

Morning

Our neurologist came in to tell us that he has us scheduled for Marek's third EEG. They want to see if the Vigabatrin has cleared up any of his hypsarrhythmia since he has made developmental gains. Although I love Children's hospital and their amazing staff I hate the fact that staff members remember us and know our names. Our tech was very nice, she commented on how big Marek has gotten in the week and a half since she has seen him. Marek must be a pro at EEGs  now, he slept the entire time she was hooking him up. Even though this is his third time getting this test ran it still breaks my heart when I see my sweet little boy hooked up to the wires and machine.


Afternoon
Ryan and I were 100% certain we wanted to start ACTH, hence why we are here at the hospital. Therefore, the doctors came in this afternoon to talk to us about our decision to chose ACTH. Most people, myself included, would think that if there is a drug out there that could help give my child the best future possible why wouldn't you start it immediately. But when they came in to talk to us about the side effects and then gave us the statistic that ACTH has a 1%-3% mortality rate my whole outlook changed. It's hard to decide whether to listen to my head or my heart. My head is telling me that this is the best drug out there from all the research being done (which isn't a lot since research is driven by money and since there isn't many cases of IS there isn't money to do the research) but my heart is telling me that any drug that puts my child's life on the line isn't worth it.

It literally is sickening to have to make a decision like this. Ryan and I go over every situation, every precaution we could take, every outcome that is possible and yet we aren't 100% sure what decision to make now. As parents we are suppose to make decisions for our child at this age in regards to which baby food to try first, what sleeper to wear, what schedule we can get him on or what baby proofing contraptions we should invest in. But instead we are deciding what medicine to put him on that will hopefully do more good that harm. Our entire lives have changed in these last three weeks. I read a blog from a mother who had a child with IS and she said it best; instead of updating baby books she is updating seizure logs, instead of taking videos of her child reaching milestones she is videotaping seizures so she could show the doctors and instead of anticipating each day and what her child will learn she fears each day because of what her child could lose. This basically sums up our lives now.

Tonight
We are still up in the air as to what our decision will be. We are waiting for the results of the EEG, hopefully we will get them in the morning. We are also still waiting the approval of ACTH from our insurance. Each vial of ACTH costs between $25,000-$30,000 and we will need between 3-4 vials to complete our six week treatment if we go this route. They said we can take tonight to decide what we want to do since they can't start the medication anyways. I wish we had a crystal ball that could tell us what the future holds.