drat!

another curveball.

not today.

more later.

DRAT once more.

As I write this, Trish is just a few exits away from UCLA (the last couple miles on the 405 can make the otherwise smooth drive interminable).  I spoke with Nurse Courtney this morning and she reported that everything is a go to go through the discharge process once Trish gets there.  I’ll be by the computer to give updates on the journey back home.  Here’s praying that Rudy has no idea what’s going on until he’s well underway.

It bears mention that this is NURSE APPRECIATION WEEK.  I’m not sure there’s a group our family has greater appreciation for.  So I’m going to re-watch the slideshow of Team UCLA a few times today.  Any nurses checking this should track down Trish today as the “Queen of Thoughtful Gifty Things” will not disappoint.  Many thanks to all our Superstar Nurses!!!!

Time for a quick post as we’ve got fire again in SB.  The lights just flickered here at the office so I’ll rush to get something up in case we lose power.

I just called down to the ICU and got a good report from Nurse Dawn.  She said that Rudy is calm and happy.  His sats have been holding right where they need to be.  He got his last antibiotic dose this morning and the last set of labs was perfect.  The cardiology team rounded this afternoon and concurred with the discharge plan, so we’re set to go.

Trish, having taken today to get rested up, will make the drive to go fetch him tomorrow.  Turned out she just had a virus which seems to have run its course.  I slept well in my own bed so we’ll be ready and energized to have Rudy back home–the big kids can’t wait.  Stay tuned.

Final footnote–there might be some of you who might be wracking your brain wondering where you’ve heard of Nurse Dawn before.  Check out more about her other work here.  Rudy’s got himself a celebrity nurse!

I’m glad to say there’s not much new to report, other than Dr. Sonal being one of the most compassionate practitioners of medicine ever.  Rudy was put on pressure support last night and in short order the vent alarm was ringing due to the leak around his trach (in this case a leak is not a negative thing).  Nurse Bobby and the RT tried to work with it for several hours until they finally determined that Rudy likely didn’t need what little help it might be giving so Dr. Sonal gave the OK to shut it off at 12:30am.  I enjoyed a peaceful six hours of slumber–which qualifies for “sleeping in” in the ICU.

Today brought a very good omen as we found ourselves in the care of Nurse Trina, who oversaw our first discharge.  She’s on for the next 3 days so we’ll hope the precedent holds.  Rudy’s had a calm morning and it looks like the previously stated plan for Wednesday Friday is still in place.  We had a good feeding session with OT Nicole where he ate a full 10 spoons of rice cereal.  Hard to believe it as we mixed it with the formula (which tastes like crap), but it seemed a new and interesting experience. 

In the midst of things, I’m very pleased to be able to help Trina fix her computer as it seemed to be plagued by viruses.  I suspect she thinks I’m much more tech-savvy than is actually true, but if she handles the viruses in my kid, maybe I can help a bit with those in her laptop.  If you’re reading this, Trina, then maybe my fix worked.  In case it didn’t work, I won’t say anything else nice about Nurse Trina as she’ll probably be mad at me and won’t be able to log on and read it anyway.

I said I’d leave at 1:30 and it’s now 2:30, so the little guy has worked his magic again.  It’s just so tough to pull yourself away.  In this instance, I’m glad to be torn because he’s so alert and engaged.  As Trish is feeling a bit under the weather, we might leave Rudy in the good hands here on Tuesday and rest up for the second coming back home in Goleta.

I better get out of here now.  Really.  I mean it.

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.