Originally Posted on | October 3, 2008
John has had a good week. Lots of ups and downs. But more ups than downs.
A quick summary of the week and things to pray for:
Eating – John drank 40 ml out of a bottle on Sunday night! We were excited and very thankful, since the most he had before that was 5. Our little boy was on the road to healthy eating, would be home soon, and everything was going to be great. Then, in God’s infinite wisdom, he ate next to nothing for the next two days, during which the doctors started to discuss the possibility of John coming home with a tube so he could eat. Of course, we weren’t so excited anymore. But the week has leveled out well. Wednesday, Thursday, and Friday he has had at least one feeding a day of 10 ml or more through a bottle. Usually more. A good sign. He may still come home with a tube, but things are looking better.
May John be blessed with a growing ability to suck and swallow.
Breathing – John is still having the breathing episode where his breathing becomes very inefficient, and his oxygen level in his blood drops—sometimes quite a bit. It isn’t dangerous as long as he is in the hospital, but it is scary to witness. At this point, this is the main thing that will keep him in the hospital. If it doesn’t stop, they don’t feel comfortable about sending him home. Tests have revealed no reason for these. Pray for information, wisdom for the doctors, and healing for John.
Seizures – The most recent EEG revealed no seizure activity! A very nice blessing. And the background pattern that looked so terrible in his first EEG has continued to improve. They have been reducing John’s dosage of Phenobarbital, and he should be completely off next week. This is good because it helps him to remain more alert and awake for feedings. He remains on Keppra to control his seizures. If they remain under control, they will likely start to reduce his doses of this in about 6 months to see if perhaps the seizures have gone away altogether. It would be a blessing if this is the course that God would have for the seizures.
Heart – The cardiologist just called. He said that the most recentechocardiogram showed a slight change in the difference in blood pressure on either side of the aortic valve. From about 32 to 42—the pressure on both sides should be about equal, but his bicuspid valve causes the difference in pressure. But he isn’t terribly concerned. He said it could be just a variation of normal, or it could be the beginning of a trend. He’ll know more after the next echocardiogram in 10 to 14 days. Please pray that it doesn’t become a trend.
We haven’t been very good responders to your emails or posts on CaringBridge recently. But we read them all, and are very encouraged by them and your prayers. Please keep both coming—phone calls are welcome as well. Other than just handling the ups and downs of John’s progress, our main challenges right now have been balancing the demands of hospital, home, and work. I really can’t begin to say how wonderful the folks at the Texas Public Policy Foundation have been. I obviously haven’t been at full capacity at work, but the Foundation hasn’t missed a beat. That means everyone there is doing something to pick up the slack, for which I am very grateful.
A funny thing: life was pretty busy for us before all this happened. And all those things are still out there. But either people have been picking up for us in all kinds of ways and places, or some of those things just don’t seem quite as important as they used to.
Many of you have sent us passages of Scripture to read. We read them too. Here is one: “As an example of suffering and patience, brothers, take the prophets who spoke in the name of the Lord. Behold, we consider those blessed who remained steadfast. You have heard of the steadfastness of Job, and you have seen the purpose of the Lord, how the Lord is compassionate and merciful.” – James 5:10-11