10:00 pm: Lindsey spent the afternoon and evening with Harvey while I ran home to see Henry and Hattie. Grandma and grandpa Goldade had been their caretakers since Harvey’s diagnosis on March 18th. We said goodbye to them today and welcomed our family friends, the Bisbeys. Hattie was so excited to play with her friends, she actually told me to go back to the hospital to be with Harvey! *Sad dad noises*
Harvey’s blood pressure has been running a bit high at times throughout our stay. Today, our care team decided it was time to give him medication to lower his blood pressure. His SpO2 levels have been phenomenal the past day, however, so we’ve seen some improvement. The color has come back into his cheeks after his blood transfusion this morning. We continue trying to keep his nausea under control as the steroids continue to make him ravenous. He continues to eat while having an already full stomach. In fact, while I was driving back tonight, Harvey & mom called me because he wanted a chicken sandwich from McDonalds. This kid is seriously having cravings! Hotdogs, penne noodles, McChicken sandwiches… Anyone care to guess what’s next on his list? He’s lost a lot of his energy and is frequently irritable due to all the steroids. This is the last week he’ll be receiving steroids. Very much looking forward to next week!
Hoping for a restful night.
2:00 pm: We were able to get Harvey up for a walk, a shower, and lunch (not a hotdog this time!). He’s had a rough past hour of vomiting and being upset from having to take a shower. Before he takes a shower, we place a plastic cover with adhesive over his port-a-cath. Taking it off hurts and he wants nothing to do with it. He is now taking a much needed nap.
Another part of this journey that’s difficult as a parent is having to be away from our other kids. Hattie has swimming lessons Sunday mornings, and she has been making such great progress. Grandma & grandpa have been sending us videos from he pool deck. We’re so proud of you, Hattie!
11:00 am: Harvey’s blood transfusion continues and his energy is returning. Unsurprisingly, he requested a hotdog! 🌭
10:00 am: Harvey had an early morning, waking up at 3:30 am. His hemoglobin has dropped below 7.0 g/dL overnight (which was expected) and he is currently receiving his first blood transfusion of red blood cells. We’ve been trying to manage nausea and keep food inside him this morning. Slow and steady wins the race. We are anticipating another quiet day and are hoping for him to get rest and nutrition.
Happy birthday to my brother & Harvey’s uncle, Steve! He’s spending his birthday here in the twin cities at our home helping care for and entertain Hattie and Henry.