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!