He’ll be off the ventilator by Kindergarten…

I heard from a few subscribers today about no update going out last night.  Sorry about that–we didn’t get the post up before the automated send deadline.  Thanks for your dedicated reading.  I noticed today on our stats site that Rudy’s Beat crossed over 25,000 hits today.  Wow, that’s amazing!  The support and interest in our little warrior is overwhelming.

We had decided not to mention the possibility of extubating Rudy this morning as I’m not sure how many nights we’ve left with that being the plan only to have a change in course overnight.  Unfortunately, that was the case again.  Rudy had a great day yesterday–alert with consistent numbers where they all should be–so they were going to steadily dial down the vent overnight to see if they could get to 8 bpm by 6am.  A routine chest Xray at 4am (if there is anything routine about an Xray at 4am) showed a plural effusion on his right side–fluid on his lungs.  The drain on that side had fallen out yesterday and the team decided not to replace it, but took the course of monitoring things closely.

The good news is that the accumlating fluid was detected quickly before other signs of distress kicked in.  The ventilator was bumped back up and he underwent a procedure this morning to install a new drain (more generic bears again).  All of the numbers have held fairly well during the day, so the main issues we had to overcome were the sedation that knocked him out most of the day and the always closely-monitored flow of urine.  We’re still waiting for the latter to come back where it needs to be to let us know his kidneys are OK, but we’re glad that Rudy woke up and joined us again about an hour ago–the good kind of awake, where he can focus and looks at me with quiet, patient but questioning eyes.  We can drive ourselves crazy if we focus too much on getting that horrible tube out of his mouth.   Tomorrow!?  Tomorrow!?  Tomorrow!?  Dr. Harrison came on today and like everyone else, he’s optimistic but wisely non-committal as to a timeline.  I was able to extract a promise from him that it’ll certainly be out by Rudy’s first day of kindergarten.

We’ve noticed a respectful debate emerging between the Cardiology and the ICU docs regarding Rudy and the ventilator.  The former would want a quicker wean while the latter argue for a more gradual process (Note–if Reemtsen ever teaches swimming lessons, verify that his pool has a shallow end before you sign up your kids).  I am grateful that multiple minds, each holding their own perspectives, are involved in this key discussion.

UPDATE–THIS JUST IN!!!  As I’ve been typing Dr. Mary (pronounced as the French–“Marie”) came in and discovered 10ml in the pee tube.  Yahoo!  She also reported that Dr. Harrison feels that Rudy is far enough out of the woods on any intestinal issues that they can start some powerful medication for his chylothorax (the liquid that keeps collecting on his chest).  This will hopefully stop the fluid from collecting over the next few days so we can get rid of the drains and reduce the risk of infection from them.

We said goodbye to Robin and “Papa”, her baby boy, today.  They arrived just a few days after us from Lompoc and were part of our temporary community that formed here over the last month in the ICU.  We feel a bit like year-round residents in a resort community of some kind.  The neighbors come and go every few days, but we’re still here.  We wave to them from the front porch as they drive away.  Blessings, peace and health to you, Robin and Papa!

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…