It was a rather long weekend for Nathan. Friday and Saturday were both very good days. He continued to take 50cc or more each feeding. On Saturday they closed one of the areas in NICU because there weren't enough babies to justify keeping it open. Because of this, they needed Nathan's room for another baby who needed a more isolated room. Since Nathan didn't anymore, he was moved out into the regular area. He seemed to like it. He spent time that day and night looking around and watching what was going on. Dr. Sutter was on call this weekend and she said that with the progress he was making it was likely we would be going home the first part of the week.
Sunday was a harder day. He had several noticeable seizures during the day. I went back up there that evening for his 9pm feeding and he had 3 pretty substantial seizures while I was trying to feed him. In some ways, the seizures are harder for me since he's come off the vent because I can now hear him cry out in pain and fear. I got little sleep that night and called up to check on him several times.
By Monday morning he was absolutely worn out. He was still having seizures but he was so tired he wasn't eating much either. I talked with Dr. C that morning and he said that since his feedings were down, he'd lost weight the last couple of days and the seizures weren't under control we were probably looking at another week or two before we could take Nathan home. Dr. Brown, Nathan's neurologist, came by late afternoon and increased his phenobarbital dosage.
This has actually helped. Nathan's feeding were back up through the night and the seizure activity has decreased to almost nothing again. Dr. C told us this morning that assuming Nathan continues how he is today we will be rooming in on Friday and taking Nathan home on Saturday.
Please pray that Nathan continues to improve and please pray for Steph and I that we can survive the continual ups and downs of this journey.
4 years ago
3 comments:
To watch a child suffer & not be able to take the pain for them is the worst imaginable pain. We are praying for a complete healing & that you may have your family all together at home!
What a rough few days you all have had. Thanks for sharing it with us. We continue to praying for healing, but also for mom and dad. It is scary bringing any child home at first, so I know emotions are high. We all have faith in you and Steph and that God will provide in every way. We love you all.
We continue to pray for you, that our Lord may provide for your needs as you continue on this journey.
Try to remember, even though it is difficult to at times, that many people are praying for you all.
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