Rudy’s Day of Rest

Today is one of those gorgeous days in LA—in the 70s with a refreshing autumn wind.  I had to leave the hospital as I suddenly realized I was driving in an uninsured vehicle.  I bought a new truck, sold the old one and was in process of doing all the transfers when Rudy decided to come.  It just struck me last night that I never bothered to inform my insurance company of this, so this afternoon, once I remembered where I parked, I had to go back and retrieve the registration to give my agent everything she needed.  This rather mundane chore gave me a chance to be outside the hospital during daylight for a bit and it was so nice I took a long way back through campus and the botanical garden just to enjoy it for a bit.


Back here in the room, things are peaceful.  While Rudy has flown through several of the milestones to date, his progress seems to have slowed a bit today.  Yesterday there was talk of removing his breathing tube, but today’s chest X-ray showed a significant amount of fluid in his lungs and around his midsection so they’d like to see that drain.  This isn’t really a setback just a matter of a bit more time.  He’s sleeping a lot today and even though it’s been quite a week, looking at him we’re reminded that he is still in a very delicate state.  Even though we’ve gotten used to being in this place, it’s still the intensive care unit and the patients are by definition in very acute situations.  Please keep praying for fluid to leave his body (feel free to use the terminology you think God would find most appropriate, but basically he needs to keep peeing).


He’s completely off the paralytics now, so while he might still look motionless to most eyes, as we’ve been closely focused on him for the last week we see all the little twitches and involuntary movements that weren’t there before.  He’s very sleepy today and has opened his eyes lazily a few times today, but not for long.  Maybe that’s because we get up in his face any time we see them open and he just wants some space.  A couple of times he opened and closed his hands a bit and wiggled his forearms on the pillows.  If I put my pinky between them and the pillow he’ll fumble for a bit and try to hold on with his long little fingers.  That’s cool. 


The one thing I notice missing from the room today is the cooler with the emergency blood supply that was standing in the corner.  Looks just like one of those Colemans you take on a picnic except for the bold type telling you what’s in there.  Though the staff usually calls for individual delivery of blood when they need to do a transfusion, they do keep a supply right next to an acute patient’s bed they can get to right away if there’s an emergency.  Even though no major equipment was disconnected today, we’ll read it as a positive step that team felt it was safe to remove the blood cooler.


I don’t think I’ve mentioned that Rudy was actually the first pediatric CTICU patient on this ward.  This hospital is only a few months old and it takes awhile to get all the specific licensing done.  Up until now pediatric cardio-thoracic cases had to go upstairs with the adult heart patients.  The plan was to eventually have a wing of beds for CT cases with dedicated nurses within the pediatric ICU so that this whole section could be for kids and their families.  Even last Friday, Dr. Reemtsen told us we would be upstairs, but some things seemingly fell together and on Monday we found out that we would be staying here.  No difference at all in the care, but it does make for a unique community of families in similar circumstances.  It seems that most of the patients have come and gone since we’ve been here, but the long-term cases tend to find each other.  Two doors down from us there’s another Santa Barbara family with a two-month old that had to be airlifted here on Monday and undergo several hours of surgery yesterday.  So we check in with each other, commiserate and swap war stories we wish we didn’t have to claim as our own.


We also had to say good bye to our new friends Leilani and her sister-in-law Lauri today.  We were fortunate enough to be seated next to each other in the surgery waiting room on Monday and got to experience the surreal adventure together.  As if sitting there in angst as our little baby was having this risky surgery wasn’t enough, we endured the irritation of neighbors on their cell phones and blessed volunteers who mispronounced just about every name they had to call to the desk (so three families could be alarmed at a time until it was finally straightened out which one was being summoned).  Throw in an active little toddler pulling the fire alarm and I was about ready for my own heart surgery.  Through the morning, our pleasant hellos progressed to exchanged smirks, raised eyebrows and nervous laughter as we tried to hold the neuroses at bay.  We finally got to introducing ourselves (so at least we’d have that behind us when Allen Funt came out from behind the planter to point out the Candid Camera) and we discovered that Leilani’s husband and Rudy were on bypass at the same time.  We continued our visit over lunch next door and managed to keep in touch through chance meetings in the hospital lobby.  We were so glad to hear that they were discharged this morning.  Good health to you, Mike!  God bless you all and hope you return to the ocean soon.  If you ever get to the anchorage off Goleta, dinner at the Beachside Grill’s on us!


Tomorrow, the kids are coming to stay the night.  After some of the initial bumps, they’ve been troopers and have had a good week.  Hopefully, Rudy is resting up for his day with them.  We’re excited to see them, so in case updates are few this weekend, you’ll know it’s cuz we’re having fun!

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.

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…