Good Day Turned Sour

Roscoe just can't seem to keep a break when he catches one. After the roller-coaster for the past few days, I was surprised to come in Saturday morning and find Roscoe on the Vapotherm machine at a lower pressure than he'd been on in weeks. I asked the nurse and she said that the doctor who we'd met with to talk about his long-term plan had reduced the breathing support in response to seeing how Roscoe had suffered with added breathing support. Needless to say, I was overjoyed to see his face and to see how calm he was:

Roscoe and I played around, between him dosing off for small naps. He made full use of his NICU jungle gym full of toys:

Overnight the doctor surmised that the added breathing support was causing him issues (evidenced by increased lung patchiness on successive x-rays), so he decided to back off of the lung support even further than we anticipated. He planned to leave Roscoe on Vapotherm @ 4L/min until Monday when he'd do another blood test to check Roscoe's CO2 levels.

Over the past week, here is what his lung support has looked like:
   May 18: Bubble CPAP @ 6L/min
   May 19: Bubble CPAP @ 6L/min
   May 20: Bubble CPAP @ 7L/min
   May 21: Bubble CPAP @ 7L/min
   May 22: BiPAP @ 5-10L/min
   May 23: Bubble CPAP @ 5L/min
   May 24: Vapotherm @ 4L/min
   May 25: Bubble CPAP @ 6L/min

By comparison, we have never had them change his breathing support this much in such a short time span. For most of the day, we were greatly relieved because he seemed much more relaxed and we could see his face for longer than a single 30-minute span. Roscoe's personality seemed fully returned as he flashed huge smiles at the nurses and even talked back and forth a little bit.

I sent a text message to Tifany and Caleb, who is are town for the next two weeks. I left them know that his mask was off for at least the next two days, so they should come if they wanted to see lots of his face. Thankfully, they came and got a good amount of time with him.

Roscoe stayed comfortable and playful for most of the day, with his oxygen requirements at around 40-45% for the middle part of the day. Around 5pm he started needing more oxygen (in the 55% range) and then by 7pm he was up at 60%. We didn't think much of this, since we assumed he just had a full belly. Often when his belly is full it gives his lungs less room to breathe, so he needs more oxygen.

Thankfully his regular night nurse returned today and noticed him breathing extra hard. Around 9pm she listened to his lungs and said they sounded "wet". If his lungs were too wet, it would explain why it was more difficult for him to breathe and why he needed more oxygen.

Alisha put him to sleep and returned home while I made dinner. We usually eat dinner now around 10pm, because Roscoe doesn't go to sleep until 9pm. While we were eating dinner at 10:30pm, the doctor called and said that Roscoe's oxygen requirements had escalated to 75%, so they checked his CO2 and it was at 90. Looking back at his CO2 trend, Roscoe never had a CO2 measurement higher than 80, so this was very concerning. They planned to put him back on bubble CPAP to make his breathing easier, give him a diuretic to get rid of the excess fluid, and then re-check his CO2 around 2:30am.

I remember waking up around 3am and 4am, but didn't stay awake long enough to call in. At 5:30am I woke up enough to call in and speak with one of his regular morning nurses. She said he got rid of 5oz of fluid in a single diaper and he seemed stable on bubble CPAP @ 6L/min with 50% oxygen. We were thankful that he is once again stable, but we aren't sure where this leaves us.

Hopefully the coming days will provide some clarity and stability. We are thankful for all of the prayers and support we have received from everyone around the country. It is an encouragement to us that we have such a great network of people concerned about the health of our little boy. We know that as long as you continue to fill God's ears with your prayers, he will listen. For some reason God has not interceded to the point that Roscoe is home stable, but we know that he is listening and that he understands ...

"'For my thoughts are not your thoughts,

neither are your ways my ways',

declares the Lord" - Isaiah 55:8