Our hearts have been in our throats and our throats have been in our stomachs the last eleven weeks. Especially the last couple days.
It’s been a barrage of xrays and blood tests and fear this week.
Tuesday through Thursday he felt pretty great, and he had a few poos. Not too much, not too little. Everyone was hopeful I could hold him, but his roommates were very busy so our nurses didn’t want to scoop him out.
Breen’s takedown surgery is scheduled for May 12.
Thursday night he slept for six straight hours. Friday morning he was very lethargic. His oxygen needs were increasing, his desats were getting lower and he was taking longer to recover.
When they pricked his heel he didn’t even flinch. The nurse has had him before and was very worried. So they ran all the tests for infection markers, but looked normal. They collected urine to test for some random liver disease that has a TLA (three letter acronym) which I forget. Maybe CMV? Still waiting on that… Took chest xray, gave a dose of lasix hoping to help clear out some of the haziness.
His carbon dioxide level was increasing, as measured by a thing stuck to his skin called TCM (trans cutaneous monitor). The TCM is often wrong; one doctor last month called it a random number generator. But it can be useful to see if things are trending up or down. To check the real CO2 level, they need to draw blood and run a ‘blood gas’. Breen’s CO2 should measure in the 40s, the TCM climbed up to 114.
We knew it was wrong but were all worried while waiting for the blood gas. Took bets one what it would actually turn out to be. The nurse guessed closest, she said 60 and it was 61. Still too high, but not 114. Respiratory tech wanted to realign the tube. They drew blood to test kidney function. Took a tummy xray, just showed gas. Stopped feeds.
Night nurse came on and was extremely concerned by how lethargic he was. They took a bunch of cultures. Started antibiotics but resumed feeds. By Saturday morning the nurse said he was back to his rowdy self, they lowered his O2, weaned some vent settings…
I started typing this at the bedside but things got busy. For a long while. I’ve just driven home. In a later post, I will try to explain what all happened on Saturday and how much we don’t know!
Thank you for keeping little Breen in your hearts, we’ll take a double batch of prayer this weekend please!