Originally Posted on | October 10, 2008
We met with the doctors last evening in our care conference. A lot of reality. A lot of uncertainty. But also some clarity in what we need to do, look for, and pray for over the next few weeks.
Prayer Requests
I have said before, and I will say again, that God’s will will be done in John’s life. But today we exhort you to pray for healing in our little boy. And to pray for our family’s prayer life as well. Prayer doesn’t come naturally to this fallen world. And though in can be said to come naturally to those redeemed by the blood of Christ, the old, sinful flesh still gets in the way, particularly when exhaustion sets in. So here are some way you can pray for us:
- Offer thanks to God for John, William, the medical staff at Seton, the body of Christ that is sustaining us, and for John’s great improvement in eating this last week
- Pray for John to be able to breathe on his own without intervention
- Pray for John’s seizures to go away
- Pray that John would be able to eat without a tube
- Pray that John’s heart would continue to sustain him without intervention
- William is notably missing the time he usually has with his entire family. Please pray for God’s comfort upon him, and that he would turn to his Father in heaven even more than to his parents for love.
- Pray that the doctors and medical staff would be given great wisdom and skill in caring for John (they have already exhibited this)
- Pray that the Peacock family would rest in Christ during this time of trial, particularly in his Word, in prayer, and with gratitude
Now on to the details.
Breathing and Seizures
It appears John will be in the NICU for at least another 3 weeks. They can’t send John home as long as he is experiencing these life threatening breathing challenges. So two things can happen. One, they can go away and he’ll be able to breathe on his own. Two, they can do a tracheostomy on him so that he can get air regardless of his ability to breathe. Needless to say, we aren’t very excited about a tracheostomy. Doing this could take up to three weeks. First, they have to do the surgery. Then they have to keep him paralyzed (asleep) for 4 or 5 days in order to let the incision heal. Then make sure everything is working okay. And, of course, in another sense it would make clear that everything isn’t working okay with John’s breathing.
We’ll probably have to make a decision about this in two to three weeks. My guess is that either John’s breathing improves and he’ll be home in three weeks, or he’ll be undergoing a tracheostomy in three weeks. The alternative would be to leave him in the NICU. But that is very expensive and difficult to manage, and most importantly, not a good place for him to be long term. He needs to be home with his family. If breathing is the only issue keeping him in the hospital, then that will need to be addressed.
A large part of whether John’s breathing improves is up to how well his brain improves/heals from the hypoxic trauma that the doctors believe he experienced prior to birth. And there is the possibility that his polymicrogyriamay have something to do with it. But there are also some steps we can take over the next few weeks that may improve his breathing; at the least these steps will provide us with clarity.
The first thing that needs addressing is John’s seizures. For a while we thought he may not be having any seizures, the doctors think that he probably is now. It could be that he was always having them, or that as they have reduced his levels of Phenobarbital that the seizures resumed or increased. Phenobarbital is a good treatment for newborns suffering seizures because it doesn’t matter if they sleep a lot. But the sedative effects are not good for a child’s development, so they have weaned him off of it—Wednesday was his last dose.
It could be that the breathing problem is seizure related, so if we can get the seizures under control, he’ll be able to breathe without assistance. John is now on Keppra, and they have begun to increase his dosage to see if this will help. Please pray that it does.
They are also going to repeat John’s swallowing study. He didn’t swallow much last time, so they didn’t learn much about the structure and functioning of his throat. It could be that there are physiological (rather than or in addition to neurological) reasons that are impairing John’s breathing—and swallowing as well. This test should be completed by early next week.
Also, they will likely do another 24 hour EEG study on John. This could provide more information on whether the breathing challenges are related to seizure activity.
They will also have an ENT come over and evaluate the structures in John’s airway to see if anything in particular is causing these breathing episodes.
Sucking and Swallowing
John has shown remarkable improvement in his eating over the last week or so. I have already mentioned the four consecutive feedings with the bottle without using the feeding tube. We haven’t seen that again, but yesterday he had two full feedings with the bottle, and three of four at 50 ml or above (a full meal right now is 85 mil—he eats 8 times a day). So he is going strong.
Heart
We learned second hand through the neonatologist that the cardiologist thinks that John will have to have some surgical procedure on his heart within his first year. We knew that was a possibility, but hadn’t known that it was likely. But for now his heart is serving him well and will likely keep doing so as we deal with these other issues for the time being.
Again, thank you for your faithful and persevering prayers. We know it can get weary to pray over and over for the same things, but we cannot bear this without the saints. Please continue to lift all of us up in prayer and especially our precious miracle of a son whom we thought we would never be blessed with.