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Author: Rolf
A Quiet Day
I’ve been enjoying a quiet morning here sitting with Rudy. Actually it’s now already afternoon—time kind of mashes together during this process. Yesterday evening I crashed. I think the unique patterns of sleep and stress caught up with me a bit. So, I stretched out on the chair bed at the back of Rudy’s room and checked out. Even with all the lights on and people coming regularly and having discussions about his condition, there’s a rhythmic hum from all the equipment that fades it all together and makes for a bit of sensory deprivation.
Rudy progressed well in the wake of his chest closure yesterday morning and the team has continued the ongoing balancing process making sure that blood is getting evenly distributed throughout the body, that the blood gases stay in check, that heart and breath rates are where they should be, that liquids are draining properly…so many details monitored by so many gauges and switches. I think I count ten different lines going into his body and two coming out. Throw in the harness of breathing tubes and the various wires to monitor heart rate, temperatures and oxygen saturation and it’s a very involved rigging. I’ve noticed the nurses regularly give attention to this, rerouting lines here and there and relabeling all the lines at both ends to make sure there’s no question what’s what.
This morning when we came in they had removed the headband that was monitoring fluid levels in his brain so I’m looking at a nice broad expanse of forehead. It’s got a nice warm color, but I hope there’s a chance he’ll get a bit of a wash today as I can see some tape residue from the band and he looks a bit like a middle-aged man whose comb-over is beyond help at the end of a humid day. The team has said a few times that “he’s negative” which is actually positive (we’ve learned to not get immediately panicked by anything we hear). They track all of the fluid going into his body through all these tubes and then subtract how much is coming out. If the number is negative, that’s good as it means the kidneys and other functions are performing and he isn’t retaining liquid anywhere, though looking at his little body with his long skinny arms and legs don’t give much evidence of places he would store it.
He needed a transfusion this morning as there was concern about where his blood levels were headed. His oxygen saturation was getting down into the low 70s so among other measures they increased his blood volume. The green number reads in the upper 80s now so that’s a good thing. This falls again among the many things the team does proactively to make sure balance is maintained and we continue to be grateful that his condition hasn’t taken a turn such that they need to chase after something.
Rudy’s opening his eyes wide and is looking around quite a bit today when he isn’t sleeping and every now and again starts to gnaw and try to suck on the breathing tube. They’ve got the ventilator turned down to 16 breaths per minute, but he’s getting around 45 which means that he’s breathing on his own over the ventilator. They may try to remove the ventilator as early as tomorrow, but I have to keep reminding myself that, as encouraging as progress is, this isn’t a race of any kind. Just now they rolled Rudy’s head right up and now his eyes are wide open and he’s really putting those eyes through their paces—we’ll post the picture shortly.
We just took a quick lunch break and while we were gone the number of tubes was decreased by one as they took out the chest tube that was draining fluid from his incision. Nurse Cheryl gave him some happy medicine and he’s sleeping comfortably now. So now there’s one less piece of equipment at the foot of the bed. Over the last several days, I’ve had good time to contemplate the Oasis Dry Suction Infant/Pediatric Chest Drain manufactured by the Atrium Corporation. The team would regularly come in to check the tube and how much fluid was going into the reservoir over time. Eventually the flow lessened to the point where it’s not necessary anymore, so that’s the milestone for the day. In my time of contemplation, it did strike me as odd that in addition to all the medical language and the measurement gauge on the chest drain was a prominent cartoon of two polar bears fishing on a small tropical islet complete with coconut palm. Not sure what they have to do with the device’s purpose or if some marketing team testing graphics decided that this would be a more saleable design than bunny rabbits or balloons. I was intrigued enough to ask Dr. Harrison (the attending) when he came by yesterday. He admitted that in all his years here he has never noticed the fishing bears on the chest pump, but felt that they looked more like regular brown bears. Totally unhelpful. Why are they white then? Why would they be in tropical latitudes? Why would they be fishing with bamboo poles and bobbers instead of their paws? For the first time I saw a member of the crack UCLA team stumped and I suspect he’ll think twice before offering his usual “Do you have any questions?” at the conclusion of his visits.
So, we’re grateful for the peace of this day. The kids check in regularly by phone and we are so grateful for Oma and Opa as well as the La Patera school community embracing them. We’re making plans for them to come visit this weekend and stay the night. Trish is on the other side of Rudy’s bed addressing birth announcements and I would suspect will have them in the mail by the weekend. After arriving in the room this morning, she divulged to me that she wished she brought along her Swiffer as the smudges on the floor are really bugging her. I’m wondering if a stop on the Psychiatric Unit downstairs might be in order…
Closing Time!!
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.
Torn Between Three Loves…
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.
The Most Intense Day of Our Lives
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.
Just Got In
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.
Rudy’s Out!!!
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.
Surgery Update
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.
8 A.M. Update
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.
Late Night Check In
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…