Anxiety on the Plateau

Last night and this morning were challenging.  While Rudy seemed peacefully asleep most of the day yesterday, late in the evening and this morning he took on a bit more of a troubling appearance.  While his kidneys are functioning and the team feels it is more a matter of time than a cause for alarm, he hasn’t been very alert for awhile and it’s hard to tell whether he’s awake or asleep–his eyes are puffy and he doesn’t open them very far.  When he does open them the look seems a bit more pained as opposed to the quiet curiousity they used to have.  This morning when I came in and got close he got more animated, the guages picked up and shortly thereafter a small tear formed out the side of his left eye.

His lower torso has a lot of extra fluid and shakes as he hiccups and makes raspy snorts out of his ventilator.  Not the most comforting thing to have to sit by and watch.  Dr. Reemtsen and Dr. Levi have both already stopped in (on Saturday!?) with the same message.  We’re on a plateau, things are progressing, it will just take awhile.  They are going to start Rudy on a different diuretic to see if that furthers his progress.

Emotionally, it’s been a bit challenging for us.  After the drama of surgery earlier in the week and Rudy’s initial progress, it was easy to get lulled into thinking this was going to be smooth sailing, but today we’re encountering the reality of this process and the challenges of enduring it.  Thanks for continuing to pray.  We’re excited that the kids will arrive shortly and that Oma and Opa will be able to sit with Rudy for awhile.  We do wish that the kids would be able to see the wide open, curious eyes we got to see earlier this week, but we’ll have to play that by ear.

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!

Another Member of the Brian Reemtsen Fan Club!

While doing some googling today, we came across a site of another person who has been in our favorite heart surgeon’s care.  Not the usual pediatric patient, but a great account of the quality of the team here at UCLA.  We’ll write a tribute of our own soon! 

http://saipanscuba.blogspot.com/2008/09/two-week-follow-up.html

To read what Mike wrote about Rudy, click here: 

http://saipanscuba.blogspot.com/2008/10/putting-it-back-into-perspective.html

So glad that the same team giving our kid a chance at life is giving Mike’s kids a chance to have their dad!  The internet rocks.

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…

 

Another Milestone Surpassed!

Well, it is almost 4pm here on the west coast and I’m wondering where in the world today has gone.  We left Rudy’s room around 11:30am so they could start the “closing up” procedure and Dr. Reemtsen met us in the waiting room about an hour later to let us know he was done.  All remains stable so far…although Rudy is going pee pee, his kidney function right now is still cause for concern but all the really smart people around here seem to think that it is just a matter of time. 

So now we pray against any infection from preventing his healing and we begin to pray for the next hurdle…getting him off the ventilator and breathing on his own.  Once that is accomplished then he needs to start learning how to eat.  He’ll be given my milk through a feeding tube at first, then gradually work his way up to learning how to nurse (we pray!!!) – not an easy process from what I understand.  But that’s work left for another day…today we are just sitting and resting with Rudy and enjoying looking into his eyes every now and again when they open.