The Sleepover

It has certainly been a long couple of days. I returned to Topeka to work in the office Monday and Tuesday, and was already planning on returning to Kansas City Tuesday night. My mom had gone to the hospital to sit with Henry both days, and Tuesday afternoon she texted me to call her. Henry's hemoglobin level was low so the doctors ordered a blood transfusion. With normal, healthy kids' hearts, doctors will typically allow a low level of hemoglobin, but for babies with hypoplastic left heart syndrome, the doctors prefer to not let that level drop too low, hence the blood transfusion.

The nurse was also concerned by his breathing, which started getting more rapid and labored on Sunday, so ENT came by to look at his throat. Henry had been pretty raspy (and snoring!) since his cath lab, but ENT said they saw no issues, and confirmed that there are no signs of vocal cord damage! A plus for Henry!

Jason and I got off work Tuesday and I came home to finish packing and we called up to the hospital to check in our little man. We got updates on his ENT and some other lab work done. All was well so Jason and I headed to dinner, and I left to come back up to KC from there.

I showed up to the hospital as the doctors were doing the evening rounds and was greeted with, "Oh good, you are here so we can give you an update" - not exactly what you want to hear. Henry had a bloody stool, so the doctors ordered an abdominal X-ray. They found a concerning spot, so the doctors decided to stop his feeds. Then Henry had another bloody stool. The doctor came in and ordered blood work but the nurse was unable to draw blood from Henry's PICC line, so we had to wait for some declotting medicine to unblock the line and draw the blood. While waiting for that, I went back to the Ronald McDonald House to wash my face and grab a pillow and blanket. I got back to the hospital, and they also did a prick on his foot to do a blood culture (typically done when it is thought there may be NEC and/or pneumatosis). Jason decided to head on up.

For the first time since his surgery, we decided to sleep in the room with Henry. We were able to get a little bit of sleep alright during the night, despite us getting a noisy teenager roommate at 2:00 am. (We'd have more sympathy for the kid, but he whined more than Henry.) At 6:30 am, Henry had another X-ray. The spot the doctor and radiologist had thought might be pneumatosis looked better, but was still showing up.

Jason and I slept on and off until noon. We left for lunch and I took a nap at the Ronald McDonald House while Jason went back to the hospital. While we were gone, they did more blood work on Henry. His BNP level was significantly higher than Sunday, indicating excess work by his heart. The doctors increased his milrinone and ordered an echo, which confirmed a decline in function from his last echo on Sunday.

Throughout all of this, Henry has been a real trooper! I am sure it has helped him that Jason and I took turns holding him all day. He is currently on antibiotics and is receiving TPN (basically glorified sugar water with calories and nutrients) as well as some lipids, so he hopefully won't loose a lot of weight since he will most likely be on bowel rest (no food through the stomach) for about a week.

Some insight we did receive today, is that the doctors like the babies to be at least 5 kg, as well as at least four months old, for the Glenn surgery. Henry weighed in at a whopping 3.925 kg Tuesday morning, before all of this went down. We hope Henry continues to put on weight so he can be big enough for his second surgery once he turns four months old.

I think right now all I really want is for our son to come home. We have a lot of milestones to hit and bridges to cross before we get there. We know this will likely not be the last setback, but hopefully Henry can continue to come through these trials stronger than before.

Thank you for all of your continued thoughts and prayers.