Originally Posted on | November 18, 2008
Last week, the doctors gave John an experimental does of steroids, hoping to short-circuit the seizure process going on in his brain. It worked for a while—for about three days, the seizures were much less frequent and intense, but then Saturday came along and seizures returned. Although since then, the seizures don’t seem to be quite up to the level they were before.
The next step is putting John on a Ketogenic diet. This diet is designed to put his system into a state of Ketosis, which mimics aspects of fasting by forcing the body to burn fat rather than carbohydrate. This has an anticonvulsant effect in many patients. It means taking John off of breast milk, at least for the time being, and we don’t necessarily like that from an emotional perspective. But the alternative is to try yet again another anticonvulsant medicine, and they haven’t been all that successful so far. If all things work out the diet will begin on Wednesday once he comes off of his Ph probe, which is designed to give us more information about whether John has problems with reflux.
To date, we can’t see why we would do any of the procedures we discussed last week—a tracheostomy, a gastrostomy or G or feeding tube placed in his stomach, or the Nissen fundoplication (stomach surgery to keep him from having reflux). He isn’t always breathing great, but it is not because his airway is closed. And we haven’t seen much evidence of reflux. Of course, that could change tomorrow. But we just don’t feel like putting John or our family through all these things as a precaution for something that might happen. All the information isn’t in yet, so please keep us in your prayers and we make these decisions.
Quite often the doctors or nurses tell we need to figure out what our goals are for John. Isn’t it great that God has already figured that out for us! We want John to glorify God by enjoying Him forever! Of course, that doesn’t make all of our decisions for us, or even easy, but it does take the big load off of our shoulders. For this we are very grateful.
As we are grateful for all the love and support we are receiving. The elders in our church came to the NICU Sunday and anointed John with oil and prayed for him, along the lines of James 5: 13-15 “Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing praise. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven.” The deacons prayed for Bill at their meeting last night. And people continue to lavish us with food, visits, and prayers beyond measure.
“O Lord our God, we will give thanks to you through Jesus Christ our Lord forever with our whole heart; before the gods we sing your praise!