gold stars for croc

This morning, because we needed some tangible outcomes on which to focus, my wife made a list of goals for the day. The list included the following: lower base level of pain medication, require fewer boluses (extra doses) of pain medication, get out of bed, take a few sips of water. Honestly, it seemed l like a very optimistic plan, but I think we both felt that if anything on the list was accomplished, it would be a pretty great day. As it turns out, our little Croc helped us checkoff every item.

Less pain medication: Because Caemon’s pain is decreasing, we talked with the attending doctor and agreed with her that the pain medication could start to be tapered down. Obviously Caemon is still healing and will need some pain management, but he has also shown signs that he is getting more than enough and is ready to taper off a little. We knew that we could always increase the dosage again or ask for more boluses should he be in significant pain, but as it turned out, decreasing the pain meds showed no difference except in his level of fatigue. Caemon felt well enough today, in fact, that he skipped his nap. A week ago, he was sleeping all day.

Fewer boluses: On top of reducing the baseline, we were hoping Caemon could get away with fewer additional doses (boluses) of his morphine, and sure enough, there was only one bolus needed at the end of the night after a bit of coughing, which was surely rough on his raw little throat. One bolus is a big deal after receiving several a day for the last couple of weeks.

Out of bed:  Caemon gleefully walked around his room today, played games at the window of his ante-room with me, picked his own clothes out of the closet, and continued to walk around to sit in a chair. I saw genuine smiles on his face, true joy. It was lovely to see him moving and looking more like himself.

Sips of water: Jodi handed Caemon a bottle of water late this afternoon just to see what he would do with it. The boy cannot resist sports-top water bottles, so he immediately opened it and took a swig. I have never been so happy to see my son drink water, yet as the day moved on, and he drank more and more water, I was brought to tears more than once. Drinking will soon lead to eating, which will soon lead to feeling a whole lot more human, and, well, leaving the hospital eventually.

Every last one of these goals were met, and a little unexpectedly, but our son is starting to return. He is fragile, sensitive, much like a brand new butterfly, but he is becoming more and more an active participant in his world again. It is such a beautiful thing to see.

As if today weren’t lovely enough, we received news this evening that his neutrophil count was over 700. Now, this number can fluctuate, but this is a phenomenal number. On the other side of the double doors, this was a going home number, a no longer neutropenic number.

On our side of the doors, we still have some work to do. The counts are going to go up and down a bit more, and eventually, we’ll need to see them stabilize. While the liver issues are certainly improving, we have to see them continue to resolve. We are still seeing Caemon need platelet transfusions every day, so he will need to be able to go without these for several days at a time. And, ultimately, Caemon has to be able to sustain himself on fluids and foods, and he has to be able to take a number of medications by mouth. After a day like today, though, goals like these seem far more attainable, and we can only help him continue emerging safely and securely. Seeing him meet one goal, one milestone after another, it is becoming clear that home is in sight. Right now, after all these months in the hospital, such a notion feels very, very surreal. We have a lot to do, a lot of planning and cleaning and preparing to bring our boy home, and I plan to visit this in a post very soon, but for today, I want to revel in this progress, for it has been a very good day for our little Croc.