It’s been a Sunday of calm routine here in the PICU.  Rudy sleeps.  Rudy eats.  Rudy poops.  But most importantly, Rudy breathes.

I can’t believe it took me almost seven months, but last night as I was walking to dinner I popped into CVS and bought some ear plugs.  Took all of two minutes and $1.69.  It was a move that afforded me something closer to REM sleep for a few hours, but by 4AM even the vent alarm going off every 3 minutes penetrated these defenses.  I was prepared to endure until morning rounds for the team to give the order to put him on trach collar, but Dr. Sonal brought relief to me and Nurse Bobbie a few hours earlier when she checked on Rudy at 6:30am and decided it was time to take him off the vent.  As we’ve got some time before the antibiotics run their course, it’s likely we’ll give Rudy another break tonight and let him sleep with the vent on pressure support (why doesn’t that alarm bother him?), but he’s been very calm and comfortable on room air all day with sats right were they should be.

Dr. Andy laid out a plan during rounds that he would let the antibiotics course finish on Tuesday and look to discharge Rudy on Wednesday.  His one request was that no one discuss this plan in Rudy’s presence.  So, as far as Rudy knows, we’re leaving on Friday.  That way, we’ll have him out of here before he has time to pull one of his pre-discharge tricks.

Wednesday Friday can’t come soon enough.

When Trish told me she went ahead and bought an extended parking pass here at UCLA last week, I wondered whether it would be cost-effective.  Well, turns out it was as we’re going to be here a bit longer.  Rudy’s o2 sats have continued to be low throughout the day and he hasn’t been able to wean off of oxygen.  The culprit is atelectasis, a fancy word for a kind of partial collapse in his lung.  Not as scary as it sounds, but it really would be best to send him home breathing room air (21% O2), he’s at 30% right now.

The best theory I’ve heard for the pathology of this is that he very likely had some kind of virus (indicated by high fever) which ran it’s course but left him needing to recover his respiratory function.  Dr. Mary said that the average baby is sick 40-50% of their first year with some kind of bug or another, but since Rudy is a bit compromised they can upset his system more than normal kids.  In addition, the trach doesn’t allow him to maintain pressure in his lungs like the rest of us can, so this can cause some of those small passages in the lungs to close down.  But all of them need to be working to bring sufficient oxygen into the blood.

The good news is that Rudy doesn’t appear to need a major intervention (like the vent) to push air in.  He does get regular breathing treatments and suctioning, but the key treatment is known as “Chest PT–Q3”.  Bypassing all of the sophisticated technology and highly trained people here in the ICU, Chest PT is essentially the act of playing the bongos on Rudy’s chest and back for five minutes every three hours to loosen up his lungs.  I politely listened while Nurse Carlin gave me my orientation and was pleased with how quickly I caught on–there’s even a rubber percussive thingy I can use if I want to change up the sound.  Rudy actually really likes it and just lays back and closes his eyes while I thump around.  So far there isn’t a written policy about impersonating Ricky Ricardo, but if I keep it up it may fast become a guideline.  So, this is how we will combat our newest foe:  Atelectasis, you have met your match–Babaloo!!!!

It’s just past 9PM on Monday and I’ll give Rudy his night bottle and then make the drive home in order to change assignments with Trish.  Please pray that we’ll get over this hiccup and be back together at home again soon.

The kids are in bed and I’m trying to take just a bit of time to gather my thoughts before sleep comes.  Quite a day we’ve had.

When Trish got to UCLA just before 7pm, Rudy was clearly in a different state than when she left this morning.  He was agitated, running a fever and Nurse Christine said he had a couple episodes where his heart rate was racing up over 200bpm–all giving more credence to the onset of an infection.  After some work she was able to get him settled, off to sleep and even catch a few winks herself.  They haven’t started any major lines yet, but may come in later tonight and get an arterial going.

I’m admittedly dazed in the wake of this turn of events.  I don’t think I’m all that worried about Rudy right now.  I don’t like the fact that he’s in distress and so uncomfortable, but as long as the docs continue to feel that he is stable from a cardiac perspective he does fight his way through these things.  It just takes time.  Time.  Here we go again.

I’m once again struck by how little of this journey with HLHS takes place on our terms.  Even if the intial diagnosis was a surprise, I think we somehow thought that from there we would be able to prepare and approach this thing methodically.  I guess two weeks away from the hospital made me forget the reality that Rudy’s fight started earlier than we planned and lasted far beyond what we allotted.  I guess I subconsciously assumed we were going to be able to schedule this thing a bit more from this point on, only to find ourselves thrust back into another episode yesterday afternoon.  Storms never come on our terms–we just respond to them when they come.

Tonight I’m aware of the aches.  I hate that my kids had to come home from school and be confronted with a new cycle of  tag-team parenting just as things were getting routine again.  Sweet, super kids–and maybe I’m just reading things into their behavior, but it sure felt like there was an emotional edge exposed tonight in our interactions.  They deal with it the best they can.  And now that they’re asleep the house feels really empty.  I’m tired but also at a bit of a loss with what to do with myself–the daily schedule of meds, treatments and feedings isn’t there anymore.  But beyond that, I just plain miss Rudy.  I always wanted him to come home, but the two weeks he was here changed the intensity of this.  Now, it’s not just that he isn’t here, it’s that he’s absent from where he belongs.

Trish made it home and took a nap before the kids made it home from school.

I just got off the phone with Dr. Robert who gave an update.  From his history with Rudy, he feels signs are pointing more toward an infection around the tracheostomy.  Since Trish left, Rudy’s breathing became more of a struggle so he was put back on the vent.  This brought his color and sats right back.  Rudy has shown signs like this before as infections have come on.  The irritation and occasional bleeding from inside the trach, a condition they call trachietis, are contributing pieces of evidence.  They asked me to give consent to start a picc line, but they aren’t sure yet if that’s a step they’ll take.  They have to decide if the IV they have started will work for the blood draws and antibiotic regimens they will likely have to start.

You can bet it’s an emotional setback to already be returned to decisions regarding vents and piccs, but the team does feel that cardiac issues are not contributing factors.  That’s good news, but the reality is that we’re looking at 7 to 10 days for the antibiotic course.  So, Trish is gearing up to head back down this evening.

More when we have it.  Thanks for keeping in touch and praying.

Sorry if these posts are a bit sporadic along with the information therein, but I’m trying to make sense of it all myself here in SB as Trish phones me with updates.  Morning rounds brought a familiar cast of characters around–Drs. Robert, Gary, Ryan, Mary.  We value their input.  Right now Rudy doesn’t appear to be in any kind of distress, but there are enough things unclear about his condition that it looks like we should prepare to be there a few days.

I’ll let Trish fill in the gaps when she gets to the computer and can post.  Of greatest concern is the fact that Rudy’s o2 sats continue to be low.  What blood they could draw showed some issues with white cell counts that could indicate infection.  He has been generally afebrile (no fevers to speak of).  He did cough up a bit more blood this morning.  The team is still having a very hard time drawing any blood from him.  In case what they’re seeing is just the initial stages of an infection, they’ve started him on a three-day course of antibiotics.  If one of the cultures comes back with something specific, they will initiate a more focused and extended antibiotic regimen.

One issue that has to remain in the picture is that Rudy’s heart may be giving indication that the time for the Glenn (2nd operation) is approaching.  I must confess I havn’t gotten around to educating myself as much about that, but one indicator would be the dropping sats.

As I write, Trish is on her way back to SB to gather some stuff to stay at the hospital.  The ride never gets dull.  I like dull.

It’s 1:30AM and Trish just called.  It now looks like Rudy will be admitted back into the hospital.  His saturations seem to have picked up back into his usual range (60-80%), but one bit of info that wasn’t clear to us before was that the scope of Rudy’s airway gave evidence of what might be a trach infection.  In group consults, information bounces around a bit and all the data doesn’t get to you at once.  The ER folks don’t feel it’s wise to send Rudy home with so many unknowns.

The irony of all of this is that UCLA has a shortage of floor beds so the only place they can admit him to is the ICU.  Guess his former room is empty.  Not sure how I feel about having our “usual room” in a place like this, but glad that Trish and Rudy are headed to familiar surroundings with familiar personnel.  We’ll see if the morning brings further clarity, but for now the course looks like it’s going to be 2-3 days in the hospital for a good antibiotics course and/or a closer assessment of his condition.  Trish and I will also scramble some logistics as she packed for the daytrip and is without the gear for a longer hospital sojurn. 

Sooo, which lucky fellow gets to start the picc line this time?

Just got a concerned e-mail in response to my last post from a friend who expressed simpathy for this latest “twist on the Rudycoaster”.  Thanks, Kim–that term sticks.  Being Rudy’s dad is a thrill and we’ve learned to be joyful over the commonplace things–probably because they happen amidst a backdrop of twists, loops and turns that suck the breath out of your lungs.

Two hours later and I’ve been sitting here in SB trying not to dial the phone but wait until Trish calls.  Trying to occupy myself with books, TV, web–none of which are doing the trick, but I sure am glad there’s ice cream in the house as that does seem to be filling some need right now.

Trish called just before 11pm and reported that the hospital team has been confounded in trying to draw enough blood for the labs they need–folks from the PICU have even come down to try and find a vein.  In the midst of this, Rudy is on oxygen, but his sats are still too low.  No one is particularly concerned about the blood from the trach anymore–the chest Xray is clear and the airway is not obstructed or damaged.  They got enough blood for one test at the lab and perhaps that result will give them enough of an idea about whether they need to work on getting more.

Our friend Kathy has gone to UCLA to sit with Trish.  Probably a couple more hours until we hear anything so I’ll doze with the phone nearby.