Day 23 – April 10, 2022

7:30 pm: Our original plans for today had us all in Rochester, MN. Outside enjoying 60° temperatures. Celebrating a birthday with beloved family friends. As I look out our hospital room window facing south, I’d give anything to be in our previous life. Over the horizon some 90 miles, beyond my line of sight, we’d be singing “Happy Birthday” just mere blocks away from our former house. Harvey’s very first home. We’re there in spirit today – Happy 3rd birthday, Lianna! I cried seeing the picture of you and Harvey together from your birthday last year.

Our goal this upcoming week is to get out of this hospital, transition back home, and become familiar with what will become our new way of life. Harvey’s labs have been continuing to trend favorably, albeit his blood pressure is still a bit elevated and he’ll receive a higher dose of meds to counteract it tonight. He still had a few smaller emesis episodes today, but overall has been doing well keeping his food down and his weight steady. I hope we continue this trend in the months and years to come.

I see my Jenga champion yawning in his hospital bed. Time to kick-off our nightly hospital routine of a complete body scrub-down with CHG wipes, fresh pajamas, evening medications, and brushing teeth. Lindsey is home with the twins tonight, who are no doubt incredibly happy to have some normal return to their lives. Good night!

4:45 pm: Harvey is having a fairly good day and has been full of energy up until an hour ago. He’s not quite tired enough for a nap, but wants to relax in bed. We’ve spent a good portion of the day walking together and playing his new favorite game in the playroom: Jenga! This kid is astonishingly good at it. He yelled at me for knocking over the tower and I had to explain to him that I actually was trying my hardest to not only play, but maybe even win a game! Since the games in the playroom tend to be swapped out frequently, Harvey was worried we wouldn’t find it again. I told him we’d bring it back to our room to play later (which is encouraged). He was convinced this isn’t allowed and proceeded to loudly warn me of any staff members that may be looking at us on the walk back to the room. “Dad! She’s looking at us taking the game!” he shouted, while pointing a finger directly at a smiling nurse. He’s so comical!

He’s up and ready to roll again. The Jenga blocks are being re-stacked. Time to get owned by my 4 year old! We’ll check back in later this evening.