Originally Posted on | October 15, 2008
Things get busy, so we don’t write. But then so many things happen, we don’t know where to start when we do try to write.
So I’ll start where I am, in the NICU (this is from last night).
John is undergoing a 24 hour pulmonary cardiogram (PCG). It is the doctors next attempt—as much a process of elimination as search for a specific cause—to understand why he is having his breathing challenges.
This is the first time we have engaged a pulmonologist in John’s care. He will look at the results of the PCG for airflow, reflux, heart rates, etc. to see what else we can learn. As previously mentioned, an ENT will come in soon thereafter to take a look at John’s airways from a structural perspective. The combination will enlighten us in some ways, either telling what the problem is, or what it is not.
We’ve also began a search for experts in John’s particular brain malformation, Bilateral perisylvian polymicrogyria (BPP). Not that John isn’t getting good care now—he is. But no telling who is out there who might bring just a little more insight into John’s situation. We really don’t want to bring John home with a tracheostomy, and perhaps someone can help John’s doctors identify the reasons for his breathing disruptions.
Originally Posted on | October 16, 2008
Today is John’s birthday. He is one month old. Happy birthday, John!
I’ve loaded three new photos of John in the photo section. One of these shows him without any wires or tubes. It was the first time we’ve seen him since the day he was born without any tube, etc. They took everything off to give him a bath. And they left his feeding tube out for almost half a day. But eventually had to put it back in.
Originally Posted on | October 20, 2008
I was talking to some friends at church Sunday. Among the topics of conversation was rest: “Thus the heavens and the earth were finished, and all the host of them. And on the seventh day God finished his work that he had done, and he rested on the seventh day from all his work that he had done. So God blessed the seventh day and made it holy, because on it God rested from all his work that he had done in creation.” – Genesis 2:1-3
As God rested after His work of creation, He gives rest to His people in His creation. One way He does this is through the body of Christ: “The cup of blessing that we bless, is it not a participation in the blood of Christ? The bread that we break, is it not a participation in the body of Christ. Because there is one bread, we who are many are one body, for we all partake of the one bread.” – 1 Corinthians 10:16-17
Amidst our weariness, the Peacock family is being blessed with much rest in the body of Christ these days.
Originally Posted on | October 22, 2008
We moved to Dell Children’s today. Well, I should say that Kelly helped John move today. I haven’t been there yet. But will be tomorrow. I am taking the morning shift while Kelly goes to the Ladies Bible Study at church. It has been a while since she has been able to go.
The transition went well. John had a good day, especially compared to yesterday. Tuesday he had a pretty severe seizure/desaturation episode and stopped breathing. Kelly was there. But they got him back up and going without much trouble.
Originally Posted on | October 28, 2008
(This was supposed to be posted Tuesday, but it wasn’t.)
John’s heart procedure (the balloon aortoplasty) was scheduled for tomorrow, but now has been delayed until Thursday morning at 9 a.m. The reason is that they need to have a surgeon on standby in case something goes wrong, and no one was available on Wednesday.
Since last Wednesday, we’ve been at Del Children’s Hospital. It was tough to move, but it has been nice to have a room to ourselves and be able to have more visitors. The transition from Seton to Dell Children’s finally settled down on Saturday. John and William’s Aunt Liz and cousin Annie came to town to help out (a lot of other family has been here as well during this time). We had both a fair amount of time with John and William. And just the two of us. Plus, John ate all of his meals from a bottle from 8am to 5 pm. No desaturations at all. He hadn’t had a seizure for 3 days.
Originally Posted on | October 30, 2008
John’s procedures went well. The bronchoscopy revealed no further blockages in his throat, and Dr. Nowlin said he’d outgrow the laryngomalacia. So that is good news.
The balloon aortoplasty also had good results. They were able to reduce the gap in the blood pressure on either side of the valve by about 50% with very little leakage. Dr. Finnegan said that he wouldn’t be surprised if we had to do this again in 4 to 6 months, but it could be longer as well. In any case, we’ve bought some time to deal with the seizures. The only complication from the procedure was that John lost his pulse in his right leg because of trauma to the veins/arteries–they had to run both tubes up his right leg because they couldn’t get access through his left leg. But this evening the pulse is returning. They can’t feel it, but they can hear it with the Doppler. So please pray for the full recovery of John’s leg.
Originally Posted on | November 4, 2008
John recovered well from his procedure last week. But since Saturday morning he has been having problems with seizures and breathing. The two problems are related at times, but it also appears that John is having breathing problems not related to his seizures. But it is hard to sort this all out while the seizures are ongoing.
Originally Posted on | November 11, 2008
Just a quick note to ask for prayers. The doctors keep upping John’s medications, but the breakthroughs of seizures appear to be increasing—even though he had increased dosages today, he still had three seizure episodes throughout the day. The doctors have told us that this means we may not be able to control them at least for now. So we are meeting with them this morning (Tuesday 8 a.m.) to discuss what that means—short-term and long-term. In particular, we’ll be discussing what support John and our family will need in order to bring him home while he is still having seizures, and how to make all that happen so we can bring him home.
Please keep John, our family, and John’s doctors and care providers in your prayers.
Originally Posted on | November 12, 2008
Since Bill has been going up the hospital at night, some of the bedtime routine for our oldest son, William has come into my care as of late. William enjoys “just one more song” and not so much because of my singing voice, but because I think he really likes the company and would rather not go to sleep right away. I also believe he has found some comfort in the hymns that we have been regularly singing as he picks the same requests over and over. One of his favorites is “O the Deep, Deep Love of Jesus”. He also likes “Amazing Grace”. They bring me great comfort as well and a sense of peace I never thought possible. One song that gives me great hope and peace is, “My Shepherd Will Supply My Need”. It goes like this:
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.