We slept last night like we haven’t in awhile. We got to bed around 12:30 and even though we popped up a few times during the night, we were awakened at 7:45 by the kids calling before they headed off to school. I called over to check on Rudy and got a report that he had held steady through the night and was doing OK, so we took our time eating breakfast and getting ready to come over.
Trish woke up hoping that today would be a tearless day, but unfortunately that quickly wasn’t the case. Not long after we got to the CTICU, we heard word from her family in Kansas that her father’s diagnosis is Glioblastoma which could not be fully removed and is not curable. After the way last night ended with Livy begging us to come home, it added another place to those we wish to be: with Rudy, with our other kids, and now in Kansas with Trish’s family. Please continue to hold up Trish’s family in prayer – her parents, Dick and JoAn, as well as her two older brothers and their families.
The hospital staff quickly became aware and though we got quite a bit of empathy and kindness. It’s weird to be the hardship family everyone might talk about in the break room—did you hear what else happened to them? It can make one wary of tomorrow, but it seems the best way to make it through this is to wear a kind of emotional hospital gown. You try to keep it buttoned up at first and make a good appearance, but after awhile you let the flaps fly open and don’t really care anymore who sees what. There are powerful emotions on this journey. Trying to stuff them could likely make you crazy.
In the midst of all this, Rudy is a superstar and has become an unabashed favorite among several of the hospital staff. Maggie the Cardiology Fellow likes to give a “Rud-ee! Rud-ee! Rud-ee!” cheer when she comes in to see him. Everybody thinks he’s really handsome and the medical folks say he’s a model patient. His vital signs continue to be perfect and every set of labs is progress in the right direction. The big concern today continued to be that he would start peeing regularly. Last night, Dr. Nita realized she was coming in so often to check his little tube that she finally just laid down on the chair bed in our room to save herself the walk. The kids were a bit taken aback that we told them they should pray for that today (Wilson preferred we refer to it as urinating—probably makes for a more proper prayer if one must actually ask the almighty for such a thing). Every doctor that came by this morning looked intently at the tube leading down to the foot of his bed as they came through the door. Finally this afternoon, the diuretics did their stuff and Dr. Harrison (the ICU attending) said it was time for dancing in the street.
We went out to do some shopping, the most important errand being to get Rudy some socks as his feet sometimes get cold. He’s got them on now and we’re torn as to whether his feet are cuter with them or without them. They backed off the paralytics this afternoon as he’s progressing very nicely and they’d like him to be able to move a little bit as this would prevent fluid from amassing in his tissue. Among the “preparing us for the worst” items yesterday was the likelihood that he would be very puffy until they could get all the fluid to properly drain from his body, but that hasn’t been the case. Especially now that he’s peeing, he looks leaner than he did in the birth pictures. Dr. Reemtsen says that if he keeps progressing at this rate, they’ll close his chest on Thursday for sure as they have left it open to facilitate draining and let swelling go down. Don’t think I mentioned that detail—we learned of it during our first consultation here at UCLA. It’s not as bad as one might think, though Trish hasn’t been curious enough to look. There’s a mesh over the opening and then what looks like yellow plastic wrap over the top—but they assure us it’s a very tough material.
The coolest thing about them reducing the paralytic drug is that he can open his eyes now, so as I sit here looking at him he has them lazily open just a bit. When we come close, hold his forehead and start talking they slowly open up to about halfway. If one looks long enough and close enough, every so often there will be the slightest movement of his mouth and tongue. I wonder if he’s getting tired of having his nutrition by IV and wants to get some of the real stuff. It’s pretty easy to hover over him for hours and just watch, but we also need to let him get his sleep.
It’s almost 11pm and we should head off to bed for some real sleep, even though it is so peaceful right here with Rudy I almost want to bed down here for the night. Monina is tonight’s angel so we’ll rest easy. Thanks, Jesus, for guiding our little boy today. As today was such a day of extremes in our family we’re learning to embrace the good with the bad and trust God’s hand in both.