Countdown to Discharge

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!!!!

Smooth sailing on Tuesday

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!

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…

 

 

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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!

Not Much To Report…

…Today was truly Rudy’s day o’ rest!  His little body finally stopped kicking long enough to realize it was tired and he slept, slept, slept.  When he was awake, he was quiet and calm.  His little eyes were glazed over and he looked tired but he wasn’t agitated at all.  He did spike another 104 degree fever early this morning which was concerning to the team during the a.m. rounds but thankfully he was  fever-free the rest of today.  So, today the team left him alone, allowed him to rest and continued waiting for the cultures to come back.  One variable that we know for sure is that Rudy has c-diff…a bacteria in the gut that we all have but is normally controlled by other bacteria.  Rudy, however, has been on antibiotics that have killed off the other bacteria so Rudy has been battling a terrible case of loose stools brought on by the c-diff running rampant.  It could also account for the temps, etc. but we need to wait for the cultures to come back to know for sure.  If the cultures come back negative, then they’ll take Rudy off the IV antibiotics and we can begin the vent wean and work toward getting Rudy home again.  If the cultures come back positive, then Rudy will have to stay in the hospital until the full course of IV antibiotics is complete.  We’ll know tomorrow or Saturday. 

In the meantime, we spent some time today inventing toys for Rudy.  Sadly, the MATTEL Children’s Hospital (emphasis on MATTEL) has a shortage of toys.  We needed something to occupy Rudy’s little hands as he was using them to tug at his tummy-IV port and his vent tube.  Nurse Sara came for a visit and made him a syringe rattle and I constructed his “tube handle”.   Both seem to satisfy his need to hold something without the threat of disconnecting anything. 

Rudy's new toys
Rudy's new toys
He’s a funny, little boy with funny, little toys but he’s pretty endearing.  He has driven Dr. Andy a little crazy this week but I think Dr. Andy will agree that you can’t help but love him.  I’ll head home to SB sometime tomorrow and Rolf will take his shift over the weekend.  Hopefully, we’ll be looking at a discharge early next week.  Thank you for your prayers this week…

One Week Down

A week ago tonight, we were waiting in the ER hoping for the green light to go home…well, we’re still here at UCLA and today was a tough day.  After the episode early this morning, we waited a good bit of the morning for an xray to help determine the next step.  The xray did show some fluid in the lungs…not quite pneumonia but something to address nonetheless.  Dr. Andy wanted to get a picc line in him to get Lasix directly into his vascular system and dry up those lungs but Nurse Anita who puts the picc lines in just wasn’t willing to attempt another picc line in Rudy as she has not had any success with him the last several tries (I don’t blame her).  The alternative was to put a peripheral IV line in but that, too, is not easy to do on Rudy.  Dr. Andy did it himself and ended up putting an IV in one of the prominent veins in Rudy’s stomach area…not a typical place for an IV but it worked.  The only drawback is that it is well within Rudy’s reach and he grabbed onto it with his killer grip and almost pulled it out!  As a result, Nurse Sam had to wrap his torso in netting so he couldn’t grab onto it anymore.  If it weren’t for his buddha-belly physique, he’d look like a member of the “Village People” with his fishnet tank.  He finally settled down about an hour ago after a full day of restlessness and discomfort.  We were all pretty concerned around 4pm this afternoon when his fever spiked to 104 degrees…he was seriously uncomfortable at that point and Nurse Sam had him packed in ice from head to toe.  His fever finally broke and he fell asleep soon after.

Dr. Andy is pretty certain he is battling an infection and ordered a couple of antibiotics as a precaution until the cultures come back.  No matter what it is, it’s clear Rudy’s body fought hard against it all day today and so I pray tonight he is able to sleep soundly and rest up…he sure deserves it.  I love this little boy.

Stayin’ Put…

…very sad!  We were so close to going home but at 5am this morning Rudy took a turn for the worse and we are back where we were last week.  He spiked a high fever, battled a heart rate over 220 for a few hours (It’s currently at 203), was put back on the ventilator and we are now waiting for word from Dr. Andy whether or not we can attempt another picc line (Did I mention I’m sad?).  The hardest part is watching him fuss for so long…he hasn’t slept in hours even with the help of Tylenol and 2 methadone rescue doses.  Saint, I mean, Nurse Sam and I gave Rudy a bath which helped calm him a little bit but he’s still pretty restless.  Most likely he caught another virus bug but we’ll have to wait 2-3 days for the cultures to come back to be sure.  So, we wait.  Please pray for the kids today…they were sweet and agreeable yesterday but I’m afraid today’s news could be discouraging (I know it is for Mommy and Daddy…we’re sad).  I’m very grateful for Drs. Andy, Sonal, Mary and Nurse Sam today…if we have to stay, I’m glad we’re in good hands.  I’ll update again later today…