Slowing the Pace

Rudy had some challenges yesterday afternoon. He began to struggle with his breathing more than the doctors wanted as the ventilator was progressively being turned down over a series of hours. His blood oxygen saturation was consistently low and his digestion slowed significantly (an early sign of distress). The doctors also discovered a thyroid deficiency and were also concerned about the level of fluid in his lungs (too much, so by late afternoon they decided that he needs to rest and gain strength for awhile. They took him off breast milk and turned the ventilator back up to where it’s doing all his breathing for him and gave him time to rest. So, he’s been on this course through last night and most of today.

The doctors have told us that they will always communicate clearly, especially if there are major complications, so we are trying to hear them very clearly that this is a setback, but not outside the scope of what they would expect in the treatment process. It is a bit of a discouragement to have to re-adjust our timeline and realize we may be looking at a matter of a week or more rather than a few days to get him off the respirator. So please pray for him to continue gathering strength and to give him comfort in this process–he’s continually more expressive and the soundless crying fits can be tough to watch. There are increased risks of pneumonia for patients who are on ventilators too long, so please pray for protection from that and that the thyroid production would kick back in. On a positive note, his kidneys continue to make good progress with the creatinine falling to 1.1 this morning. This afternoon, they will do an Xray on his stomach to make sure that there’s nothing physiological interfering with his digestion.

I went to see Rudy at 6am this morning and since then we’ve been away from the hospital with the rest of our kids. Please pray for them during this time. Trish and I are trying to be wise in the way be balance life during this separation. The longer it extends, the more we will need to look at taking some trips home so that we aren’t just trying to cram time in with them on the weekends. They are always eager to see us, but having to make the trip to LA too many weekends in a row could get old.

Seeking the Good in Suffering

The evil results of pain can be multiplied if the sufferers are persistently taught by the bystanders that such results are the proper and manly results for them to exhibit. Indignation at others’ sufferings, though a generous passion, needs to be well managed lest it steal away patience and humanity from those who suffer and plant anger and cynicism in their stead. But I am not convinced that suffering, if spared such officious vicarious indignation, has any natural tendency to produce such evils…I have seen great beauty of spirit in some who were great sufferers…and I have seen illness produce treasures of fortitude and meekness from the most unpromising subjects.

C.S. Lewis The Problem of Pain

In the brief time I had back in Santa Barbara prior to Rudy’s surgery, I considered bringing along the above title but thought the better of it; partly because I wasn’t sure I’d have the concentration for thoughtful reading but more because of my tendency to carry six books in my luggage when I probably won’t make it into the second. As it happened, friends Bonnie and Monique came to the hospital with a book of daily readings from Lewis that serves things up in easily-digestible chunks (please pardon the jargon). The readings for October are all from The Problem of Pain so I’ve enjoyed being spoon-fed this wisdom each day.

I appreciate the words above for Rudy’s sake and my own. Trish and I are so blessed to have such a cadre of friends walking with us through this. Our kids see and experience it and I trust Rudy will know it as well. Life on this journey includes lament, frustration and anger, but I have pondered the appropriate place of this. It would deny something very human to suppress such feelings, yet I’ve found little to gain by taking offense on someone’s behalf. I don’t think I’ll ever get to the point where I can be glad for what Rudy has to go through. I hope it won’t be viewed as ingratitude to say that any and all of the blessings received within this time don’t make me grateful for HLHS. I’m not looking forward to conversations in the years ahead where we have to be frank about Rudy’s physical limitations and perhaps explain to him once again that he can’t engage in certain activities. But I don’t want to be angry. I don’t want him to be angry. May the fortitude and meekness Lewis displayed in his own life bear fruit in ours.

The patient vigil continues here in CTICU room 5439. As Trish has already indicated in her post (we’re engaged in a laptop duel this morning), Rudy is making slow and steady progress and we’ve made some adjustments to our own expectations regarding his timeline. While his initial bounce back after surgery got us hopeful that such a pace would recover in his recovery (with the breathing tube coming out sometime last weekend), the pace is not concerning the doctors. They tried to back him off all medications on Tuesday, but decided yesterday that he still needs some to regulate blood flow and kidney function.

In the last couple of days they have rolled in some of the big machines to examine his internal organs just to make sure there’s no damage and everything is checking out fine. They want to make sure Rudy gets enough nutrition so he stays strong and that his body continues to gain strength and not lose weight. The good news is that his creatinine level is down to 1.7 (from the 2.4 range) so the nephrology team is happy. Over the next few days, the team will take things more slowly on the ventilator, turning it down in very slight steps to see how he adjusts.

As I write this, Rudy is wide-eyed and alert. Every now and again, he stretches out his arms and holds up a fist—kind of like a football player does when he’s being carted off the field to assure his teammates he’s OK. Trish and I are would like to remain here together until they free him from the ventilator as that will be our first chance to hold him other than the brief instant just after birth, but we sure were hoping that chance would come this weekend. It looks like we’ll have to wait until next week sometime. At that point, I think the staff can roll his crib out of the room and give it to someone else because I don’t think we’ll be putting him down.

Two Weeks and Counting…

It’s so hard to believe that Rudy is two weeks old today! The days have blurred together since we’ve been here and it’s amazing how fast time passes. At week two, we find ourselves continuing to wait…to wait for Rudy’s kidneys to kick in, to wait for the ventilator to be taken out, to wait for all the numbers to be where they need to be. They tried taking Rudy off the ventilator yesterday and he lasted about 10 minutes. It was concerning to us but the doctors said it is pretty normal to make short attempts like that to exercise the lungs and make gradual steps toward getting him off completely. It’s getting a little hard for me to watch the patients on either side of us come and go and not get discouraged but we keep reminding ourselves that this isn’t a race and Rudy is doing well for his situation.

Rudy received his first toy this week…a gift from the Child Life Office here at the hospital. He’s now the proud owner of a musical aquarium that we fastened to his monitor rig. It bubbles as the little fish sway back and forth to classical tunes. It’s actually quite soothing and I find myself getting lulled to sleep in the late afternoon right along with Rudy! Ha Ha He likes it alot…he was quite alert the day he got it and when we turned it on for the first time he began to kick and move his hands around and his eyes were fixated on it! It was so fun to see him react to it!!! So now his view is a little less sterile and a bit more fun.

Rolf and I are doing well although I’m a bit steamed because he got mistaken for a UCLA student yesterday when we walked down to the Student Union to run a couple of errands and on Sunday I got mistaken for Max’s grandmother!!!!!! NO FAIR!!! I know I’m looking a bit haggered these days but come on…not to mention Rolf has alot more gray hair than me!!!! Anyway, my ego has taken a hit but my postpartum body is bouncing back quickly. 🙂

Please continue to pray for steady progress and for our patience with Rudy’s timeline. His kidney function is holding steady, but will take time to get where it needs to. As he’s taking breast milk well through his feeding tube, the next milestone will be to get off the ventilator and have the breathing tube removed.

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…

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…