What happened this Memorial day weekend was no fun for anyone. Alex came down with another UTI the previous week, got started on antibiotics quickly, as has happened before, so we expected him to feel better in two days as has happened multiple times before as well. We were so confident in this outcome, in fact, that Gretchen went ahead with her trip back to Savannah as previously planned. But there was a new bacteria in the mix this time, a staph bacteria, so we had to change to the more extreme antibiotics until we figured out which of the weaker ones it would be susceptible to. In the meantime Alex kept losing IV sites rapidly and needing restuck again and again, including another one in the head, so they ordered a new PICC line placed since they’d need vein access to administer the antibiotics for at least ten days, which would be a lot of sticking of the boop, if they had to give it to him by injection every time. But they couldn’t get a PICC team in when they ordered it, and they couldn’t get the PICC placed when they finally did get a team, so they notified the vascular surgery department to come help them out. But vascular surgery only had one person working, so they couldn’t spare that person being tied up, in case of emergencies. Eventually the nurse team tried again and got it placed, after another three hour attempt, his second in two days, and throughout all of this Alex was reportedly very good.
But. Probably the nurses who told me this, that he was so so good, were trying to ease my mind to an extent, stretching the truth most likely, or even if he was very very good throughout the whole process, he’s long ago proven his ability to dissociate and fake sleep when he’s super stressed, so I imagine he was lying there the whole time with his gums clenched, his eyelids pressed tight, wishing it to all be over. And probably desatting the whole time. Bradying and desatting, which means they want to give him more oxygen, more ventilation, more support. Which they did. They put him back on the higher air support system than he’d been on for a couple weeks, and then the higher one after that. Back on the NiPPV, which we hadn’t seen since early April. It was such a dramatic reversal of fortunes that Gretchen had to cut short the weekend back home, where she’d been sanding and painting the crib, among a plethora of other projects, and that’s how you know it’s serious because she despises leaving projects unfinished.
I needed her, though. I dealt with things on my own for almost three full days before it got to the point where I really needed her, which I figured out by the fact that I started crying while trying to explain what was so frustrating to me to a random respiratory therapist who had just been stopping by to check his equipment and had said essentially nothing to me beyond common pleasantries, as far as NICU pleasantries go (“how’s he doin,” etc.).
Tyler Naquin is on my fantasy baseball team. He’s on the injured list, currently, in the middle of a rehab assignment with AAA Columbus, which happened to be in Norfolk this week. Alex’s antibiotics had started working well enough by Wednesday that I felt comfortable going to the game for a few hours, to take my mind off things.
It was CHKD day at the ballpark (the children’s hospital where Alex is currently living). I saw one of his doctors there, playing a fool with some kids I hope he knew. A woman offered us her tickets while we were going up to buy ours, saying her daughter hadn’t wanted to come. The seats were part of the CHKD block along the first base line, but deeper, towards the outfield. Tyler Naquin plays right field for Cleveland, and Columbus had him starting in right field Wednesday, so he was close enough to our seats for me to ask him how he was doing. I mean, I could’ve asked him from anywhere in the stadium, if I’d wanted; I can make myself heard. But he was close enough to me to be able to place where my voice was coming from, and he did so, and looked right at me when I yelled for his attention between innings. I asked how he was feeling. He gave me a thumbs up. I told him he was on my fantasy team. He tugged his jersey front, like “represent.”
In the fifth inning he led off for Columbus with a home run. I decided he was, indeed, feeling better. But the inning continued, with Columbus batting around and Tyler getting another shot at the plate with two outs and the bases loaded. It didn’t occur to me at the time, but he had the chance to homer twice in the same inning. I wonder if he’s ever done that before, at any level, because he certainly tried to. With a 1-2 count he swung at a pitch in the dirt, an 82-mile per hour slider, thinking it was a low fastball like the one he’d put over the center field fence. It wasn’t, though. The pitch bounced in front of the plate but he swung at it anyway. I sat back in my seat, said to Gretchen’s dad, “He wanted it too bad.”
Alex is doing beautifully now. He’s just finishing up his antibiotics course, and he’s come all the way back down on his air support to the basic supplemental oxygen he was on before all of this. He’s eating from a bottle like a champ. Sometime this week, he will be getting a circumcision to hopefully address his recurrent UTI problem, and if he is showing no other signs of regression, then we might be getting transferred to a hospital back in Savannah.
We had started talking about this prior to his most recent UTI. A nurse brought up that if Alex goes home on oxygen, he’ll have to be monitored to make sure he’s getting the correct amount, which means he could desat on the way home, he could have a brady and an apnea and a desat and these can be very scary things to happen when you aren’t driving down I-95 at seventy miles per hour. So the nurse suggested we talk to our insurance about the transfer, to see if we could have some medical supervision paid to make this journey back to Georgia, and to our great surprise, they said yes.
Then came the UTI, the days of watching him backslide, helplessly watching, frustratedly watching, making suggestions that no one seemed to want to listen to, switching residents, dealing with the holiday-weekend hospital which slowed functioning to the point that I thought at times the only adults left in the building were me and our nurse. It felt like a deserved regression. Not earned but deserved. I’d wanted it too badly. To go home, to get my life right, my marriage right. My son. I should’ve been happier to have what I had, I shouldn’t have wanted more, and as a result I needed to be humbled.
Which is stupid. But that’s what it felt like. And anyway we are doing better now, better again, and no it’s not a crime or a sin or a middle finger in the face of karma to want more for yourself, or to celebrate what you have, which to prove a point I will do now, by changing tones, but in a separate and subsequent entry.
The tone in this one is kind of a bummer, see.