It’s Monday night and I’m in with the boys. Kristen took the early shift today. I had to work the entire day, so I ate dinner, got a download from Kristen, and then headed over to the hospital.
I can describe Samuel as the comeback kid now. It certainly too soon to claim victory, but just looking at that little boy…you can see he’s a new man!
He’s had 2 rounds of Indomethicin already, with the third and final dose to be administered at 10pm tonight. He’s breathing much more comfortably and he’s not only off the CPAP machine, he’s back on the Vapotherm at 4 liters and 24% oxygen. And he’s on his back.
By comparison, last Wednesday he was breathing well over 100 breaths per minute, on 4 liters at 35%-40% oxygen and on his stomach. He looked defeated.
Now he’s resting like a grown man taking a nap! I even told the nurse he looks healthier. His skin just seems to fit him better now and his face seems fuller. Part of that could be the IV fluid, but I prefer to think its him getting healthier.
The doctor had ordered another echo for Tuesday and we’ll then talk about the results. Hopefully the echo validates what we’re seeing. We’re just so happy he appears to be doing much better.
Jacob and Charlie were moved into the same room today. Their room is a little bigger now and accommodates two babies. This is the room typically reserved for twins. It’s right next door to where Samuel is.
Tomorrow I’ll post another update after the echo. But that will be likely later since we are having dinner with Laura and Charles Seidel, who just too took their triplets home from the same hospital!
Thanks for all the messages and phone calls of concern and love. We take this stuff pretty hard but the nurses and doctors have made us feel like this is somewhat expected and part of the process, so nothing much to be concerned with. Still, until Samuel’s breathing like Jacob and Charlie are we will still be concerned.
On Saturday Samuel got a dose of Indomethicin and it seems to be working. One of the telltale signs that it’s working is decreased urine output / reduced kidney function, and that’s what they’re seeing. We haven’t talked to the doctor yet but we confirmed a second round of the drug is ordered. Charlie had three rounds, for comparison. I expect they’ll do the same with Sammy and then take another echo to see the difference.
Speaking of seeing the difference, he looks sad with his CPAP mask on but he also looks tremendously more relaxed in his breathing. His chest retractions are greatly reduced and he’s definitely more comfortable.
Jacob hit the 4-pound mark today. He’s breastfeeding when Kristen is here and he’s practicing with a bottle too. Yesterday he took 10mL. Jacob got a bath yesterday too.
Charlie gets his bath today. He’s also practicing with a bottle. He had his top popped for a bit but he got cold yesterday so it’s down again. They’ll try him in a day or so when he gains another ounce or two.
We’ll have another update on Samuel in a couple days.
Kristen and I usually spend between 4 and 8 hours per day in the NICU. Most of that time is spent holding the boys, changing diapers, giving baths and talking with nurses and doctors about progress. It’s great to see the daily progress with Jacob and Charlie, but it’s been frustrating to see Samuel not making the same progress.
Samuel was making some progress but this week he’s slipped back again. He’s gone from 3 liters and 24% or 25% oxygen on the Vapotherm machine on Tuesday, to 37% oxygen and back to the CPAP machine today. That’s a few steps backwards. Sammy’s had a terrible time breathing and it’s been getting worse the past few days. They did an X-Ray on Thursday and it showed a lot more “cloudy” conditions in his chest, meaning more fluid.
The ordered some dieuretics and started those on Thursday. But after 2 days there was no noticeable change.
Today they did an echo and found he’s getting even worse. The PDA is still quite large and the he’s getting a lot of blood flow to his lungs, which makes him work really hard. The left side of his heart is working far harder than the right because of the PDA.
So now we’re moving on to Indomethicin. This is the same drug they gave Charlie about 2 weeks ago.
The older the child is, the less-effective Indomethicin is. We’ve been asking for several days as far as when we’d get this drug administered, and the doctor’s have been uniform in the fact that “wait and see” has been the best course of action. But it’s clear now that Sammy is telling them this treatment plan so far is not working. So Dr. Mikas asked if they can administer this. We talked about risks, success factors and everything else and the short answer is this is Sammy’s best hope for help, outside of heart surgery.
We should know more about how this will work on Monday or Tuesday. We’ll hope for good results with this treatment. Hopefully this gets the roller coaster headed back up again.