November 20, 2023

We are quickly learning that sometimes when things happen here, they happen very quickly. We were informed this morning that David could be discharged on Wednesday! 😳 I think that was the look on our faces when the doctor mentioned it this morning. A week ago when we were in the market for a new parking pass we asked the ICU if they had an estimate of how long we might expect to be here still since you can buy a week pass or a monthly pass. They agreed that the month pass seemed reasonable, so we were planning on a couple more weeks. The doctor today apparently saw our faces and came back later and said since David is being weaned off some medications and won’t be off of them completely until Friday, that rather than send us home having to administer those for a few days, he’d rather we stay until next Monday. That was a relief. We are definitely looking forward to having David home, but I don’t think we are quite prepared yet, nor do we have all the supplies that we’ll need for his daily monitoring. 

The single ventricle nurse practitioner who will follow David at home and will receive his daily reports came and stopped by today to explain what his care will look like at home. Home should not be lite-hospital, but should feel like home with a few added touches of things to monitor. We will do a daily weight and twice daily oxygen saturation monitoring and report to her via an app. We will also manually record each of his feedings. 

This afternoon, David had a swallow study done. It was unfortunate timing that someone from the school district called about the Help Me Grow program and wanted to leave contact information, so I left my phone with Adam to gather that while I went with David to the study. Otherwise, I’d have love to share some of those fascinating photos. David was given barium in a bottle and they watched as it traveled from his mouth to his esophagus. He took the bottle from his favorite speech therapist for that study and did so well. They didn’t find any issues with how he swallows, although there was one instance where he was taking a break between swallows where the barium sitting in his mouth started to travel down his trachea. However, as soon as he took another gulp, it immediately came back up and went down his esophagus. The end result was that if we notice David taking a break during his feed, to tilt the bottle so that there is no milk in the nipple. Otherwise, David has gotten the swallowing and pacing of drinking down. They were so impressed since his first bottle was only a couple days ago on Friday. 

He was supposed to have an echo today, but they came a little bit before he was scheduled for his swallow screen, so they postponed it until tomorrow now. David was so alert this afternoon with lots to explore. Otherwise, this morning he was just cuddled a bunch. He also drank two full bottles from me today, which was great. Hopefully he continues to build that endurance up. Occupational therapy stopped by this afternoon and David did his first flat tummy time. 

Now our next hurdle to clear is keeping everyone healthy. Eli ended up having a fever this evening.