I've never been a fan of roller coasters. Never have I wanted to get off of one like I do this one. The NICU stay with preemies is often called a roller coaster ride. It is definitely ringing true with the boys' stay.
The beginning of this week was a calm reprieve for us after a crazy first week. Grant was started on feedings through his OG tube and did well with them. Bryce was having a few breathing & brady issues so they were holding off for the timebeing on his feeds. On Wednesday, Grant had a breakthrough seizure and was returned to NPO but by Friday, both were put on feedings. Bryce continued to worsen throughout the week but overall things were calm ... until early this morning.
We have determined that Bryce hates Sundays. Last Sunday he had to be reintubated and was struggling with bradycardia episodes. This Sunday has been just as tumultuous. Starting Wednesday, Bryce started having recurring brady episodes that continued to occur with more frequency as the week progressed. Saturday it was evident by their chest x-rays that both boys were redeveloping pneumonia. Cultures were drawn to check for infection and both were put back on antibiotics. By Saturday evening, Bryce was showing signs of struggling; his O2 requirements kept creeping up and he was retracting pretty badly. They continued to adjust his vent settings to help him breathe easier. Early Sunday morning (around midnight), I received our second call in a week from the NICU regarding Bryce. He continued to worsen through the night and it was decided that his EG tubing (the tubing that goes into his lungs) would be replaced to help him breathe better. The tubing was removed and was clogged with thick secretions which were causing him to work twice as hard for each breath. He did not respond well to having his tubes switched out and his sats rapidly dropped. His heartrate dropped into the 30s and his O2 saturation (which should be in the high 80s and 90s) dropped to around 6. He was coded, chest compressions were started and a they administered a dose of epinepherine to get things going again. He was only down for a short time (approximately 2 minutes) and then recovered. The new tubing helped greatly to lower his oxygen requirements as well as his vent settings.
After doing a lot of praying with Paul, I decided to go back up to the hospital to sit with him - more for reassurance for me than anything else. His skin coloring was so much better than when I'd seen him earlier that night and his sats were looking better as well. I believe by this time it was about 1:40am. Shortly after arriving in the NICU, Bryce began seizing. A large bolus of phenobarbital was administered as well as an additional medication (can't think of the name right now), to stop the seizures. Another dose was given approximately 15 minutes later as he began seizing. Shortly before 2:20am, a room was prepared for me down the hall so that I did not have to try and drive home in the awful weather and be nearer to the boys. I decided to head that way and try to get some sleep. It took me a little while to fall asleep but eventually, sleep did come. At 6am, my daily cell phone alarm went off and I headed back down to the NICU to check on the boys before heading home. At 2:20am, Bryce had a seizure that lasted 4 minutes and additional meds had to be administered but he finally recovered and had no more seizures since that time. They had him pretty heavily sedated as he has become quite a "touch-me-not" being so sick, and he was resting peacefully. I headed home to give Paul an update and get a little more sleep.
I headed back up to the hospital this afternoon. Bryce had been taken off of his feeds yesterday when he started to go down hill. This morning, Grant was taken off as well after throwing up twice. Other than requiring a little more oxygen, Grant has been doing pretty well. Bryce was doing good this morning but began struggling again after 12pm. They have had to continuously up his O2 requirements and adjust his vent settings. Shortly after 3pm, he was sitting at a rate of 74% - so much higher than the rate of 34% from earlier this morning. The first round of results from the cultures taken Saturday are showing a bug growing so the pneumonia is from a bacteria. Bryce had an echo earlier in the day that showed his PDA is still moderate/large. Since switching out his tubing and adjusting his vent settings, his bradycardia episodes have ceased. They are wanting to do another round of the endocin to close the PDA but are waiting on results from the head ultrasound which will be performed later on today before they determine whether to repeat the treatment, hold off for now or do ligation surgery to fix it. For now, we just wait.
So, yes. A roller coaster ride. Complete with lots of highs and lots of lows. I am thankful for the peace God has given to help us through the lows. I am also so grateful for the incredible staff that our NICU has. They have been a tremendous support and source of encouragement for us and care so well for our precious boys. They have kept my room open so that I can stay if need be to be closer to the boys. Please continue to keep the boys in your prayers. We still have a long road to go but are standing firm in faith that we will eventually be able to bring our beautiful boys home.
No comments:
Post a Comment