The Plan for today–Surgery

Last night I asked that there would be clarity this morning surrounding the course of action we need to take. We have that, because the 3AM chest Xray showed an a great deal of fluid on Rudy’s right side, so all parties agree that we’ve given more than enough time for the chylothorax to clear with medication and it’s time to fix the problem surgically. I wish we would have been able to get past this without having to do another operation, but compared to the one he already had, this is very minor. They’ll come in through his side and then tie off the thoracic duct so no more lymphatic fluid will come into the chest cavity.

Rudy is an “add-on” case on the OR schedule so it’s not certain when we’ll get called into surgery. They’ll make sure it happens today, but it will be in between or after the major cases. So, probably not before noon, but some time before 6pm. Stay tuned and I’ll keep you posted when I know anything.

On other happenings around the unit. We were excited for Rick and Nicole as Cody got to go home (but my enthusiasm comes nowhere near Cody’s whose been here for about a month for brain surgery). I feel genuinely happy for families as they get discharged, though I always sense an awkwardness from the parents–almost a guilt that they’re abandoning us. I’m certain I’ll feel the same when it’s our time and will struggle to contain my celebration until we’re far away from here. But regardless of our own difficulties, it’s no fun to watch someone else have to go through it and it sure makes me grateful when people can put this place behind them. I hope there was lots of happy noise at Cody’s house last night–and that it won’t stop for some time!

Logan moved across the unit over to Cody’s old room on the PICU side late yesterday afternoon. Pretty nice digs–a built-in couch, cabinets and a private bath, but more importantly it means that he doesn’t need the high-tech CTICU gear anymore. Be encouraged, Brett and Raime, you’re one step closer!

Pray for the fluid to stop…

The odd existence we’re living here make times of focused or extended prayer a challenge. Today, like many days, we uttered a quick “Please, Jesus, let this be a calm day” as we stepped off the elevator on the 5th floor. Unfortunately we were met with a bump shortly after we got here as we were having a check in with Dr. Reemtsen. Alarms started to go off and, after a couple nonchalant looks at the screen (the usual first response), the tone got more concerned and then the inexplicable signal went off and six people were suddenly at the bedside dealing with the breathing tube. Just a few minutes passed and, almost as quickly as they came in, everyone was gone. No big deal–possibly just an obstruction in the breathing tube. I’m glad there’s always a couple that check on us before going and we usually lie and go along with the “no big deal” line, but I don’t think we fool them with our ashen complexions and tears welling up. I don’t think Rudy was ever in significant danger, but I don’t think we’ll ever get used to jolts like this. Suddenly we’re both in need of comfort foods and are craving Big Macs and lots of french fries (you go to your happy place, we’ll go to ours).

The conversation with Dr. Reemtsen did set forth a plan for the week. Rudy’s cardiac function continues to be very strong, so much that Dr. Harrison recommended that his next echocardiogram be at his discharge. Everything they are addressing now has little to do with heart function, the biggest issue being the chylothorax (lymphatic fluid in the chest cavity). The hope has been that the drainage into the chest drain would taper off, but that hasn’t been the case. The medicine they’ve been giving him (Octreotide) should have worked by now, but they’re going to give it a few more days. If there’s no change, the plan is to do another surgery on Thursday to ligate the thoracic duct. Not a major surgery, but surely one we’d rather not see Rudy have to endure, so please pray that this would heal itself and the flow of fluid to the drains would stop. So far we’ve seen fluids be very responsive to prayer so let’s channel the same effort that went into producing urine into the ceasing of lymphatic fluid.

Dr. Reemtsen feels that Rudy won’t make much progress until this can be corrected as all of his nutrition is likely just flowing out of his body into the drains. They are also looking closely at his endocrine system as they are wondering if there’s some steriod deficiency or ongoing thyroid issues that are hindering his ability to move forward. There’s also been consultation with the infectious diseases team as, though no significant cultures have grown, some of his symptoms (low blood pressure, occasional fevers) are making it tough to rule out). In any case of extended hospitalization, the threat of infection emerges, so we’re praying against this.

That’s this morning’s update. In the midst of it all, Rudy is lying very calmly and loves looking up at his aquarium. I do wonder often what kind of thoughts are going on in his little mind through all of this.

Feelin’ Sophie’s Pain…

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.

A Quick Stop at Home

We are headed back to Los Angeles today after a quick visit home overnight. Rolf and I came home yesterday to tie up some loose ends, welcome Oma and Opa who arrived Friday from Texas and attend the Rescue Mission’s annual fundraiser. It was a full but very good day of seeing friends and storing up hugs for our week ahead. Rolf and I, the kids and Rolf’s parents will head back down to UCLA this morning and spend the day together with Rudy before his surgery bright and early tomorrow morning.

As many of you know, my parents were planning to come and take the first “child care shift” and then the Geylings were going to relieve them in a few weeks. Shockingly to us all, my dad was diagnosed with a brain tumor last week and has since met with various doctors in preparation for his surgery on Tuesday!! Of course, there is great concern and disappointment on all our hearts as Gma Jo and Gpa Dick are now on their own journey of faith and recovery and none of us are able to be with each other to support and love on each other in person. So, I ask that you add my Dad, Dick Wilson, to your prayer list…especially on Tuesday. Again, I find myself in a place of complete dependance on God forced to approach life one day at a time.

Rudy’s surgery prep will begin tomorrow morning at 7am and Dr. Reemtsen is estimated to begin his work around 8:30. He’s explained to us that the Norwood procedure is probably the most risky operation done at UCLA (or any hospital) and there is a critical window where Rudy will be on bypass that can’t exceed 40 minutes. The entire procedure should last about 2 hours and Rudy should be away from us for about four. Dr. Reemtsen has warned us that the next week will be a long series of highs and lows for Rudy so we are bracing ourselves and praying for emotional strength.

We are grateful for Rolf’s parents’ willingness to kick into action to be with the children. We have, however, been thrust into our new lifestyle much faster than we anticipated so it has taken everyone off balance a bit…especially Olivia. Please pray that the kids will extend an abundance of grace to one another and to Oma and Opa and that the times we do share together in the next couple of weeks will be positive and fun (interpretation: that I will refrain from filling the time with instructions for the kids and details that can wait!) I’m definitely being challenged in the area of “letting go”.

Rest assured that all the comments on the blog are being read and the phone messages and emails from home are making their way to us eventually. Thank you for your expressions of love and support and, although, we’re not finding time to return everyone’s calls and messages, we are blessed by them and we will be in touch. Big hugs to you too, Trish