While my back left me a bit worse for the wear, I made the drive down here in pretty good shape and got back to the familiar surroundings of the CTICU. Great to see my wife and Rudy after the long hiatus.
I’ll skip right to the high point as nurses Aliza and Amy were very excited to give me my chance to hold Rudy. That didn’t come until after Trish left and some of his numbers got ironed out after a transfusion and a fever that needed to break. Really, really cool! Not to bemoan my lot, but in the delivery room there was only time for Rudy to rest on Trish’s chest for a few minutes before the neonatal team took him–so even with all maneuvering around tubes and wires, it was some of the best 45 minutes I can remember to hold him and let him look up at me past his chubby cheeks. Just like with Trish, he got nice and calm and I got to run my fingers all the way through his hair and feel his soft back pressing up against my hand with each breath. I’ve got pictures, but no cable–so we’ll have to post them next time Trish has the camera. She got to go first, but if all goes well I may get additional chances before the weekend is up as this could be a daily thing.
I had been prepared for Rudy’s puffy appearance from the TPN and steroids and just about every other person who comes in here assures us this will go away. He does look he’s doing that “even my dog is chubby” routine from elementary school. The docs are pleased that, since the chest tube came out on Wednesday, they did not have to replace it Thursday AM as they anticipated. So far the pleural effusions aren’t there–but Rudy’s been known to hold off a few days before on this kind of thing. The chest Xray this morning didn’t show much fluid either so, in addition to keeping the medications going, they are limiting his fluids as much as they can–the less fluid going in his body to start with, the less can accumulate on his chest. So we’re praying guardedly and fully content to let Rudy make his own slow progress, but it would be great to see this chylothorax go away without there needing to be any other chest tubes placed for drainage. Only then can we look at feeding and breathing on his own.
In the brief time Trish and I were together today (she looked hot, by the way), we did have a meeting with Dr. David Feinberg, CEO of the Medical Center. He had introduced himself to Trish a couple of weeks ago as he regularly makes walks through the hospital to meet patients and families and wanted to hear more abour experience and any feedback we had. So we had a nice 45 minute chat where we were able to both share our high regard for the team of people caring for Rudy and also speak to some of the things he wanted to hear about improvements they might be able to make in assisting families like ours. Always places to improve, but impressive institutions have impressive leadership–many thanks, Dr. Feinberg!
As upbeat as today was, I can’t end this post without sharing one of those simultaneous contrasts that make for such a loaded experience here in the CTICU. Right around the time I was getting the chance to hold Rudy, I noticed “the vibe” descend on the unit. It’s something that you might not pick up on if you haven’t spent weeks here, but all eyes started to focus the room next door–the one with the new little girl who we also suspect was an HLHS patient. Staff began to enter and exit frequently. Nurses covered for each other in adjoining rooms so the one there could have extra assistance. I could picture the focused intensity of the doctors in the room but all I saw were the others who stood outside with expressions very different from the lightness that befits a late Friday afternoon. Equipment and carts were rolled in–the brisk cadences sometimes evolving into running steps. And then later in the hour it became quiet…the staff carefully wheeled back equipment and doctors walked away slowly saying little. Professionals all, but some sure looked like they were going back about business with moist eyes. The parents I never got to introduce myself to walked away with tears streaming from theirs with only a small collection of belongings in a pink hospital tub. The drapes in the room were drawn when I left for dinner and, when I got back it was all too clean and empty. There’s rightfully much attention paid to patient confidentiality here but even without that, I dare not ask. Is there any possible reason they could have transferred her down to the NICU? This soon after a Norwood? Prep for a transfer doesn’t look like that. Our burden may be one of indefinite waiting, but I’ll readily assume it this weekend in light of what I fear others are having to endure.
This is indeed a savage monster. Today’s simple joy is all the more precious when I realize how fortunate we are even for this. Thanks for walking with Rudy in his fight.