Originally Posted on | November 24, 2008
John’s seizures have worsened—back to where they were before the first dose of steroids. Dr. Reardon, the neurologist, decided John needed to be stabilized and didn’t want to wait until we started the Ketogenic diet, so they gave John a second round of steroids starting Saturday. Can’t do much more of this, though, because too much steroid treatment will make John stop producing his own, then it takes months to wean him off the steroids until his body starts back up again.
We also received the results of the pH probe and it seems like John is having significant episodes of reflux. This complicates matters a bit, because the surgery to treat this— G-tube/Nissen fundoplication—would be better done when John is not on the Ketogenic diet. So there is some questions about which should come first—the surgery or the diet.
Also, I (Bill) have a cold, so I can’t go see John. William and I hung out together this weekend while Kelly went to the hospital. But I miss being able to be with John. Please pray for a speedy recovery for me, and that the cold wouldn’t be spread to the Kelly and William.
We are having our care conference Tuesday morning around 8am. Treatment decisions to be made:
- Do we want to do the G-tube/Nissen fundoplication, now or later?
- If we do want to do those procedures, do we start the Ketogenic diet now or do the G-tube/Nissen fundoplication first? The main decision point here is whether more harm could come to John by delaying the diet or the surgery. Also, if the diet is successful, it would lessen or perhaps eliminate the need for a G-tube since John would be able to eat much better on his own.
- Do we want to do a tracheostomy? At this point, our answer is no.
After these decisions are made, we’ll start discussing a plan for bringing John home, then start executing that plan. We are excited about the possibility of having John home soon. But also anxious about how healthy John will be and what that will look like for our family. Having John in the hospital has been quite disruptive, but we have been surrounded by trained professionals and have been able to rely on them when we run out of steam. That will all be different when John comes home. So we will also have to work out with the staff and among ourselves what support John needs and what support we will need to bring him home successfully.
Since, then, you have been raised with Christ, set your hearts on things above, where Christ is seated at the right hand of God. Set your minds on things above, not on earthly things. For you died, and your life is now hidden with Christ in God. When Christ, who is your life, appears, then you also will appear with him in glory. Col. 3:1-4