Ladybugs and Ice Cream
What a day. Pain team came in first thing in the morning, asked how he did overnight (fairly well) and said ok, time to remove the epidural. Wait, this was what we were lobbying for but now that we were going from 60 to 0, we were having some second thoughts. How would we manage his pain? What if this were too fast? But pain team was resolute and the idea of getting the drugs out of his system (and another tube out of his body) was too compelling so 5 minutes later he was freed. He is now on alternating cycles of liquid Tylenol and liquid Toredol (Motrin), which seems to be working. And with the loss of the epidural there is no longer a need for the catheter so he is really becoming disconnected. However, we still haven’t been able to get a smile out of him despite bubble blowing clown visits, lots of time with family and some of his favorite nurses coming to visit. He has also started telling us that he is scared.
We have several goals today - the first and foremost is to get him engaged or at least a smile from him. Probably more a mom and dad thing but to not see him “in there” is very difficult. The other is to get him eating or drinking fatty substances. One of the potential consequences of the surgery is that his lymph system will be compromised. Essentially this could mean that he’d have trouble processing fatty foods for a bit of time - from days to months to indefinitely. It will also determine how long we keep the chest tube in. So getting that resolved one way or another will be helpful.
The production of getting him settled into the wagon was much easier without the numerous IVs, monitors etc On our way to the garden, we got our first hint of a smile when daddy asked him how many fish were on the wall and he said three, knowing full well that there were ten. But still, outside he was still a scowling little boy. I told my sister Jenny who is here from Seattle helping out that we really needed to find a ladybug. After quite a bit of effort and a little luck, Jenny was successful.
She proudly walked over to Crash with cupped hands and Charlie’s little miracle inside. Crash put out his hand and Jenny deposited a ladybug! Nothing like a ladybug tickling your arm to elicit a smile. And what a smile it was.
When we got back to the ICU the nurse who was in the garden with us had a quick convo with the attending and soon surgical came around and said we could move into a more familiar wing, closer to the playroom, pinball machine, air hockey table and a nursing staff who already have deep affection for Crash.
We were still struggling with fat intake so Jenny (again) ran to the local ice cream parlor for Crash and some happy hour specials for mommy and daddy. When she came back we propped Crash up in a chair in the communal family room and presented him with his Milkcraft Strawberry Ice Cream - or from our perspective our effort to get fatty food in him. This was the first time he was in a chair and we were only just starting to see his personality come back. And if the ladybug was the spark to warming him up, the Ice Cream thawed the rest away. He was full on talkative flirtatious boy. It clearly wore him down and you could see occasional winces but we knew we had our boy back. He even asked to FaceTime our family back in Anacortes so he could show them he was enjoying his delicious strawberry ice cream.
And to top it off, Crash concluded his fat calorie binge by devouring a healthy portion of pork belly that was part of the happy hour order Jenny had brought back.
We are hoping that we get some understanding of the lymph situation tomorrow and then perhaps the chest tube out in the next few days and home on or before Wednesday but some other hurdles/info needed before we get there.
Thank you all for your continued love and support. The emails, texts, help, visits, phone calls are all very much appreciated and a bit overwhelming in a touching kind of way. So thank you all.