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.
I ran across an interesting web site during the search, Shuyler’s Monster. It is about a little girl who also has BPP. Her father wrote a book about her.
I like consistency, so as far as the prayer requests go this time, I’ll repeat what we have asked for already, with a few comments:
- 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. – We are grateful for all these things.
- Pray for John to be able to breathe on his own without intervention. Not much progress here. John still needs some help at times to keep breathing. He had one last night.
- Pray for John’s seizures to go away. They are modifying his medication, but not sure of the results yet. One of the problems is we can’t exactly tell if his behavior is a seizure of something else. They may do another 24 EEG study to help determine this.
- Pray that John would be able to eat without a tube. He did this on Sunday! And almost did it on Saturday and Monday. Thanks be to God. Though we are actually cutting back on this a bit. The thought is that if John takes much more than 35 minutes to eat, then he is wearing himself out, and perhaps being set up for some setbacks. So if he goes much more than 35 minutes, they are now finishing his meal via the tube. Disappointing to some degree, but even if he were eating all his meals by bottle, he still wouldn’t be coming home. And we want our son to be rested.
- Pray that John’s heart would continue to sustain him without intervention. So far, so good.
- 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.With some adjustments to our schedule, I’ve (dad) been able to spend more time at home in the evenings. This has helped some since I am usually the bedtime person. Plus, we have focused on making weekends family time. Sometimes all together in the NICU, and sometimes we take shifts with John and William. William has done a very good job being patient, at times spending two to three hours in the NICU.
- Pray that the doctors and medical staff would be given great wisdom and skill in caring for John (they have already exhibited this). Prayers for our search for doctors who may have experience/expertise with BBPP and John’s particular challenges would be appreciated.
- Pray that the Peacock family would rest in Christ during this time of trial, particularly in his Word, in prayer, and with gratitude. Please keep these up!
A few other people to pray for:
Jerome is a baby right next to John in the NICU. He arrived a day or two before John. His parents live about 30 minutes away by car, but they don’t have a car. So when they can’t borrow one, they take a 2 hour bus ride each way. Makes it a challenge for them to be here with their son. Jerome is a preemie, but seems to be coming along well.
Emma is across the aisle here in Bay 4. She is very little, I think about a pound and a half. She is a twin. But interestingly enough, her little brother is still in her mommy’s womb. They were in separate sacs, so even though Emma was born, her brother was able to stay. Mom is downstairs on the second floor on bedrest trying to keep the brother in the womb as long as possible. My sweet wife went down to see the mom a couple of days ago to let her know that Emma was doing well, and that we were praying for her. The mom was greatly comforted—she is getting pictures of her baby and reports from her husband, but I think just knowing another mommy was up here looking in on Emma—who she hasn’t seen in person for over a week—was a great blessing to her. Of course, Kelly being a blessing to others wouldn’t surprise anyone.
Will, back in the corner, has been in the NICU for close to 4 months. But he is going home today! We are excited for him and his parents.
So please keep Jerome, Emma, Will and their parents in your prayers. And thank you for keeping us in your prayers as well.