What.A.Day

(Original appeared April 28, 2016)

This morning began like most of our mornings of late. We get up early. I take Addison to school while Deb heads to the hospital to be present for Jacob’s morning assessments and to listen in on the last “scoop” on how he did last night. I then beat feet back to the hospital to join in the assessment. But today was going to be different. I just felt it for some reason.
The nurses reported that Jacob’s kidney function numbers are ok, but his actual output is basically zero. He’s filling up with fluid again and looks bloated. They switched his meds because the old ones aren’t working. He looks so uncomfortable. His lungs are back to being cloudy again, yet his oxygen levels were decent. His brain ultrasound is still scheduled for tomorrow, but I have a good idea that it won’t be good news since we can see with our own eyes that his head is enlarging from, what I’m guessing is, a build up of fluid. And while he’s on meds, he can’t take breast milk and so he’s losing weight again. For every bit of good news, there seems to be bad news to go with it. This is the roller coaster they warned us about.
The medical staff needed to exchange Jacob’s isolette for a new, clean one. I’m glad we were there to witness that entire operation. Actually it was more like a construction project mixed with a ballet; several people dancing here and there grabbing cords and tubes, unhinging plastic walls, and all the while making sure Jacob was secure. The whole thing took only a few minutes, and Jacob was soon safe and sound in his new home.
I’m not sure if it was this changing of the isolette, or what. I simply cannot put my finger on any one cause. But today seemed to be the day that Deb and I had just had it. The whole “thing” just hit all at once. That feeling of helplessness. The realization that this isn’t some sort of game we play where we can swipe left and change the screen to something else. We can’t just hand this off to someone. We can’t say “I quit”. We can’t just decide not to do this any more. 19 days of this. Stop it. Please.
I took Deb home mid-morning. Away from the beeping and the sanitized smell and the information overload and… the absolutely helpless son of ours laying in a plastic chamber by himself, struggling to survive without a darn thing we could do about it. Away. Today was different.
Today, we grew up. All this time we had been kidding ourselves, thinking that we were “doing well” whenever anybody asked. When we looked in the mirror, we’d grin and convince ourselves that it will be okay. We weren’t lying – we genuinely believed it. Perhaps we were trying too hard to hold it together for outward appearances, rather than allowing some time to shrink into our own cocoon, just the two of us, and try to absorb what was happening. We had until now relied too heavily upon ourselves and our notion of what was comfortable and normal. Until today. Today was different. Today was day 19.
And yet the hugs kept coming. The kind texts and emails came. The out-of-the-blue encouraging words came. The good news in other corners of our life came. The opportunity came to spend some time in the fresh air with a good friend. The flow of Grace and peace continues in earnest. And here I am typing this at the end of the day, next to Deb sleeping soundly. We survived. And Jacob still fights on. It’s time to refocus, pull on our big boy/girl pants, and start tomorrow fresh. Today is done. Tomorrow is day 20. -R