Monday…still on course

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.

Shhhhhhh……Wednesday…..shhhhhh

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.

And I thought Ronald McDonald was a good clown…

What was supposed to be a fun surprise treat after the La Patera Elementary Open House brought an earth-shattering realization.  We had finished our ice cream at McDonald’s and were headed out the door when Wilson pointed to the picture of that friendly clown and said, “Hey, Dad!  That looks like Rudy!”  After my initial chuckle, suddenly all the pieces of the picture came together and I broke out in a cold sweat.  How could I not have seen it?  All this time I thought Trish’s eating habits were just a unique quirk, but could all of those daily trips to McDonald’s really been just because she likes the food?  Perhaps the drive-through cashiers greeting her by name was a glaring clue I missed.  Now I know how it feels to be the schmuck who can’t deny the resemblance between his kid and the mailman anymore…

 

 

april-16-002

The distinctive hair can't be denied
    
                                                                                                                                    The drive down today gave me time to work through my resentments toward Ronald McDonald and I arrived at UCLA to find Rudy calm and peaceful.  He has been making steady progress.  The vent has been scaled back to pressure support (where it’s not giving him breaths at a regular rate, but only when he takes them) and he’s been breathing room air since yesterday evening with no dips in his sats.  He was off the vent for 3 hrs yesterday and has just gone off for another stretch right now and  if there are no episodes the team will take him off the vent tomorrow (Sunday).
Now that we all have a chance to breathe easier,  Dr. Andy encouraged me to talk to Rudy about doing a thing or two the easy way once in awhile.  All of the cultures from Wednesday are negative, but considering how ill Rudy was, the team would still like to finish the course of broad spectrum antibiotics just to be sure nothing’s been missed.  There are only three more days left, which wouldn’t be much longer than they would like to observe his breathing.  Experience with Rudy has made Dr. Andy hesitant to be too specific in telling us when we’ll be leaving the hospital, that’s about the time frame we’re looking at. 
Communication about needing to stay in the hospital longer usually comes with an apology attached.  Sure, there are other places I’d rather be, but I’ve come to see that waiting is among the easier things that have been asked of us.  There’s been plenty of gut-wrenching episodes where the time passes anything but peacefully, so I’m OK with that.  The situation is markedly different this weekend–the team has caught up with Rudy, worked through some of the mysteries and the treatment plan seems to have us on the right course.  Thank God for smart people.
I am pleased to say that Rudy is now well outfitted with toys–both additional homemade ones as well as a new mobile and music mirror.  As I suspect this was brought on by one of our hospital angels reading Trish’s post about her fabrications, I trust they’ll read this to know how grateful we are–thank you!!  Now, if an appropriate person is reading, I should say that baby formula tastes disgusting.  I was mixing some up for Rudy this afternoon and couldn’t help but notice how bad it smelled.  I reckoned it couldn’t really taste as bad as it smelled, but boy was I wrong.  I’ve read about HLHS kids developing food aversions and now I have my own theory as to why.  I’m thinking of sneaking some Nesquik in there.

Happy 7-month Birthday!

Rudy's first hair trim - just around the ears
Rudy's first hair trim - just around the ears
Sit still Rudy!
Sit still Rudy!
Good Boy!
Good Boy!
may-1-007
Today was much like yesterday…a day of rest and waiting.  It was, however, a day with a couple of firsts…Rudy’s first hair trim (around the ears) and Rudy’s first attempt at rice cereal.  I left for Santa Barbara before the cereal feed so Nurse Barbara sent me the pictures below.  So sweet!  ‘Prayin’ for good culture results tomorrow and a plan to bring Rudy home in the next few days.  We’ll keep you posted…
First bite
First bite
Not likin' it
Not likin' it
Happy 7-month Birthday Rudy!
Happy 7-month Birthday Rudy!