Closing Time!!
Trish and I arrived at the hospital just 15 min ago and were let into the CTICU by Dr. Reemtsen who said he was going to be back in 30 min to close Rudy’s chest. Much quicker than we expected but the team is so pleased with his progess that there’s no reason to wait. Despite how it sounds, this is something they’ll do in his room and will last about 30 min. They should be starting in 15-20 min.
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.
Hi Everyone! I’ve been itching to get to my computer all day to read everyone’s comments…being connected to you all through the blog feels amazing…we are so NOT alone and the blog really helps to reinforce that…so, again, thank you, thank you, thank you! Today is not a day I want to repeat but I’m ending the day so very grateful for it’s outcome. I’m adding a couple of photos from very early this morning just before they took him to surgery…I thought Rudy looked so handsome in his little blue beanie I just couldn’t resist!
Rudy’s looking a bit different now…a little paler and drawn in the face…they have discreetly covered his open chest with a blanket but it didn’t prevent me from seeing part of it when we first saw him after surgery…a pretty tough sight for me but I was quickly reminded that although it’s no way to start a life, this is giving him a chance at life and a full one at that.
One thing that hasn’t changed is Rudy’s precious left foot. When he was first born, I was able to hold him for a minute before the took him to the NICU but since then, we’ve only been able to touch certain parts of his body…mostly the top of his head because that’s the one thing that hasn’t have a tube or cord connected to it. We’ve, at times, been able to rest our fingers on his little chest and this morning we were able to stroke his soft little back as the nurse turned him on his side for a bit for comfort.
A day or two after getting all hooked up to his entourage of monitors, they were able to free up his left foot of connection to anything and for the first time, we were able to really wrap our hand around something and hold tight. It felt so good and that whole day all I wanted to do was hold on to that foot and when I left for the night, I kissed the bottom of it and gave it a little eskimo kiss with my nose!!! So, for the past few days I’ve had a growing love affair with Rudy’s foot. It was the last thing I held on to when he left for surgery this morning and it was the first thing I looked for when he came back. It’s still free of any cords and as his appearance changes before he starts looking like himself again (the doctor warned us tonight that he’ll most likely get quite puffy and to not be alarmed), you can bet that sweet little foot will be the constant I’ll be looking for to grab onto and give a reassuring squeeze!
Good night everybody, Sleep well…Good night Rudy, I’m so proud of you!!!
Thanks so much for all the prayer on our behalf today. I don’t think I’ve had a more loaded day. It’s 11:15 and we just got back to the Tiverton guest house after spending some time with Rudy. The team is very pleased with his status. It was good to see him back in the room, albeit unsettling. Trish was pretty wiped out after all of this and we decided she would go back to the room for a rest. I stretched out on the fold-out chair at the back of Rudy’s room and dozed off intermittently while different members of the team regularly checked on him and made small adjustments here and there. The rarity of this condition was underscored by how many doctors were coming by to take a look–a Norwood procedure is a big deal. Even before we were able to get up to see Rudy, I ran into Dr. Satou in the lunchroom and he was well apprised that the procedure was completed–word travels fast.
It was pretty easy to overlook me behind all the equipment so I picked up a few comments from other doctors lauding Dr. Reemtsen’s skills and was comforted to see him stop in about every 30 minutes to check on things. The nurse told me later that the last time he came by was about 8pm–he had promised us in our initial meeting that he would be closely supervising Rudy’s care and he is certainly making good on that. Throughout the afternoon the reports remained consistent–the vital signs and the labs were all coming back right where they wanted them to be. The one detail of concern is that he isn’t urinating as much as they’d like (indicating that the kidneys have kicked in), so that’s one thing they’re working on. It really is an incredibly disruptive operation–the body gets chilled down to a point of suspended animation and then put on a bypass machine to circulate blood without using the heart. It’s not like they can just flip a switch and have everything come on again, so these next two days are very critical as they slowly bring things up to speed together. One doctor likened it to a tightrope walk, but they liked my own analogy of trying to balance a scale on a wobbly table. Rudy’s situation both before and after surgery has been one of critical balance, but the team doesn’t feel like they ever had to chase after him because he got so far out of allowable tolerances. Praise God.
This day had a comforting ending. I went back to the Tiverton to check on Trish and checked in with the kids by phone on the way. Poor Olivia is having problems holding it together and was begging us to come home. Trish was tired and worn down. Not only was it an exhausting day, but this is about the time postpartum hormonal stuff should be happening on top of it. We decided to go out and get a quick dinner and then say good night to Rudy up at the hospital. We ended up spending over an hour up there as the room was so peaceful. Rudy progress is a comfort, but more than that was the time we were able to sit and visit with Nita, the Cardiologist who will be watching over Rudy tonight. Another super-gifted doctor and a gracious warm-hearted person who served as a very friendly debrief to our day. She’s one of many who are patient with repeated questions and her knowledge of what we’re facing puts her in a position to offer unique comfort. She again reiterated that this is the time for us to sleep–they’ll be in there with Rudy almost non-stop tonight, so we can rest easy and leave him in her and Nurse Monina’s hands.
Thanks again for praying us through the day.
It’s 2:30 and they let us in to see Rudy about 15 min ago. He’s looking a little pale compared to his color before the surgery and has a lot more tubes around him. The next 48 hrs will be very critical and there is a team led by nurses Faye and Mary working constantly around him. They say the vitals are very good, some blood gas numbers that just came back are perfect.
Dr. Reemtsen just came to us at 11:50 am. The surgery went very well and without any major issues. More detail later, but we are pretty overwhelmed and so glad this morning is over. They’ll take him up to the floor in about 30 min so we’ll give them some time to get him settled in. Can’t even figure out what we’re feeling, but just grateful to God to be sitting out under the blue sky with a huge weight lifted off us.
Just got a call here in the waiting room that gave us a start. Way too early. The OR nurse just wanted to give us a report that everything is going fine, bypass is set up, and Dr. Reemtsen is starting the critical part of the procedure. Glad they keep us posted, I guess. We’re praying and trying hard not watch the clock. But I know full well when 40 minutes is up. Please pray.
It’s 8 am and we just made “the walk” again down to OR to drop off Rudy. Trish and I got here at 5:45 as we were told the call could come at 6:30, but that gave us a long time to just sit with Rudy. He had a very peaceful night and all the vital stats held their balance. The transport down to OR went smoothly save for a glitch in the elevator which sent us to the helipad instead of OR (new hospital and they had apparently activated the security card system where they have to scan a badge in order to start the elevator). Made for 30 very awkward seconds that felt like an hour before they got the thing moving again.
So now we’re going to the surgery waiting area. They call it “Maddie’s Room”, but I call it the patio of uneasy people. We’ve walked by there a few times and it looks nice enough, but all the decoration in the world can’t comfort the family members sitting there waiting for their name to be called. So now it’s our turn. Hang in there, Rudy!!
Thanks for keeping Rudy and the doctors in your prayers during these hours.
It’s 1am and I was just able to pull myself away from Rudy. Sat by his bedside praying, reading Psalms and just looking him. Nurse Debbie is a pro and has his oxygen saturation pegged right where it needs to be. They adjusted the ventilator a bit as he was getting too much oxygen because he was battling it and taking breaths on his own–medically not what we need, but there’s some paternal pride swelling in me to know he’s spunky and fighting. We visit a bit every now and again as she comes in to check or adjust something. They have him back on the paralytic, but it’s not totally working. Twice he struggles and opens his eyes a bit. As I let go of his foot after holding it awhile, he gives a small kick. Debbie thinks he knows I’m there because his heart rate jumped significantly after I sat down next to him. I spend a lot of time looking at his chest going up and down. It’s warm, smooth and perfect. I can feel the heart beating away inside there–to every appearence a perfect and beautiful boy. And in just a few hours this perfect chest is going to start carrying a scar that will be there for the rest of his life. I don’t like that but it has to happen. I grieve the scar, but I also pray I’ll be able to see it when he’s jumping into the pool or running in the breakers at the beach. I pray my grandkids will groan as they have to listen once more to daddy’s retelling of the “heart operation story”. Sleep well, Rudy, it’s gonna be quite a day…
Today was a bit of a whirlwind as we once again woke up in Santa Barbara and are going to sleep in LA (or getting into bed and trying to). It’s a day that leaves us really torn between the needs of Rudy and the needs of Wilson, Max and Olivia. We envisioned getting up early, taking care of logistics around the house, packing up and getting in the car to LA around ten. But between the list of chores being a bit too long and the kids deserving a bit more of our attention, we were finally rolling just after noon in two cars so that Oma and Opa could drive on home with the kids after a visit with Rudy.
We kept abreast of Rudy’s condition through calls to his nurse during each shift. He has remained relatively stable since we left Yesterday. I’ve noticed that no one uses generic terms to describe his status. “He’s doing fine”, “He’s doing well.” or “He’s doing great.” are generalizations that just don’t work considering the larger realities. So, instead we get the information we need in clinical language. He is in a very delicate and critical place, so he’s not fine well or great. But his body continues to waver within acceptable tolerances for the dozens of things the team is keeping an eye on. I ask questions and have received patient explanations for the same things multiple times and am amazed at how many different ways the team employs to try to keep things in balance—oxygen, nitrogen, drugs with names I can’t pronounce, a transfusion, slowing down his breathing, speeding up his breathing, raising his blood pressure, lowering his blood pressure… I liken it to a very delicately balanced scale where small weights are added and taken away from each side to try to maintain equilibrium—only the scale is on a table with a short leg so it takes constant adjustment to keep everything where it needs to be.
I didn’t believe Maria, our nurse, when she told us that Rudy had opened his eyes today as she was changing his diaper. But she said they had scaled back the drug that was paralyzing him because…oh heck, I don’t know why—guess I’ll have to ask again. I think they wanted him to be able to be a bit more responsive. But she showed us how his foot would recoil just a bit when you tickle the bottom of it. Today they have his right foot clear, so we’ve had fun holding on to that little ankle and rubbing those little toes. Seems like a good match for the left, but we haven’t been able to see them next to each other yet.
The kids and Oma and Opa came in after Trish and I had a chance to check in. This time, they knew the routine and lined up like junior surgeons at the sink to wash their hands before they went in. Maria cautioned us that she didn’t want Rudy to get agitated as his signs were all stable, so the kids did their best to touch gently and speak softly. Shortly into this, Rudy surprised us all by giving a quick shudder with his arms and legs—the most we’ve seen him move since he was hooked up to all these tubes. So much for not agitating him, but Maria was cool with it. Maybe Rudy just wanted to get up and play with his siblings.
Wilson took quite an interest and sat there watching Rudy and asking various questions about all the gauges and tubes. I answered what I could and lied about the rest. Olivia and Max wrote on the white board and also discovered that the windows looking into the unit can be used as dry erase boards too (but we wouldn’t let them—the stuff written there by the staff seems important). After 30 minutes, Trish and the kids went out into a waiting room while I sat there with my parents for another 30 before we all headed for dinner, leaving Mom behind as she wanted to stay with Rudy.
The kids wanted to say goodbye to Rudy after dinner so we returned and were just about through the hand washing ritual when Trish waved me over to the bed. As we all stood there, Rudy had his eyes open halfway for just a few seconds while tears welled up in ours. Just as quickly his were closed, but there was a big crocodile tear right below them. The nurses tell us this happens. Even though an infant may be paralyzed, they do sometimes shed tears, which can indicate they are in pain. One of those heavy moments that drops on you in the middle of something like this. I pray his eyes were just watering because I hate the thought of being so close and having to watch him cry.
More tears started flowing pretty soon as we started to go. Wilson, having the most understanding of what’s going to happen tomorrow, understood the chance of how final this goodbye might be and quietly tried to hold it together as he walked away from the bed. Pretty soon Max and Livy joined in, but we think their tears were more over the fact that we were having to say good bye for the week. We hugged as long as we could at the car amidst pleas to not close the door, but finally we had to and stood there watching the van pull away. Trish and I walked away torn and I thought how unfair my parting words of “be good at school this week” were. I’m able to take tomorrow off because I’d be useless and without any ability focus, yet here I was telling them to stick with the routine despite all the thoughts and feelings going around in their hearts and heads. Trish dropped notes to their teachers in all their bags so they’d be forewarned if anything seemed amiss. We promised to call the school to get a message to them once Rudy was done as they wanted to know right away. It’s our own little version of Sophie’s choice—I don’t want to leave Rudy, but it kills me to see my kids go through a week this loaded and not be with them.
Rudy’s first up for surgery in the morning. They’ll come to get him about seven, so we’ll go at six to sit and pray with him. Now it’s 11pm and we’re settled in our room, but I’m going to walk over to the hospital after posting this just to be him for a little bit. I don’t need sleep right now—I’m just going to be sitting around tomorrow, but I do pray that Dr. Reemtsen and everyone in the operating room is getting plenty. Lord, be with us all tomorrow.
Rudy's Beat 