40 more minutes and it will be Friday!  We made it to the end of a long, full week.  It’s clear this week was a turning point in Rudy’s recovery.  I’m not sure Rudy’s condition has changed much but how his condition is being managed has changed dramatically.  The tracheostomy performed on Tuesday allows the team many more options in getting Rudy off the vent with little discomfort for him unlike the trauma of extubating and intubating him over and over.  Rudy is definitely more comfortable with the trach and now that the focus is off extubating him, the team has been able to tackle the feeding issue pretty aggressively.  Yesterday’s gastric emptying test and today’s upper GI contrast test confirmed that there is a delay in Rudy’s digestive system which means the best way to get feeds to his gut at this point is through a GJ tube that goes through his side and directly into his intestines.  The team is hoping the surgical procedure to place the tube will happen early next week as everyone is eager to start his feeds.  A MRI was also conducted today to look for any possible reasons for the fevers he has been getting which have compromised his recovery in general.

The big push to see Rudy past all his major hurdles is, ultimately, to get him home.  The felt need to get him home is growing increasingly urgent as we get closer to the Glenn (Rudy’s second open heart surgery).  I agree that we need to get Rudy home and I see that the steps we’ve taken this week are positive ones for him but the steps taken this week also require a huge mental adjustment in what I expected bringing Rudy home would look like.  I envisioned our elevator ride with a baby free of restraints and restrictions…not trach, and possibly vent, dependent with a feeding tube.  As much as I want to take Rudy home, I admit that tonight I’m overwhelmed and feeling alone.  Pushing to get him home does come at a cost…the burden of his care and recovery will fall on us at home to a greater extent than I expected and that’s intimidating.  Now, none of this comes as a complete surprise as these treatment options were explained to us many weeks ago as “possibilities down the road” but, of course, I hoped and prayed we wouldn’t get to this point.  I feel like I’ve been naively running this marathon for four and a half months thinking that the day we bring Rudy home will be our finish line only to find out this week that this has just been the warm up…the marathon hasn’t even begun!!!  Oh, I know, we’ll rise to the occasion, we’ll learn all we need to know to take care of his special needs, it won’t be like this forever, our family will adjust to the things that make Rudy special, Rudy WILL one day talk and eat In n’ Out Burgers with his siblings and someday I may even take a trip to Hawaii and do nothing but lay on the beach for a week, but being confident of all this doesn’t make me feel any better tonight for some reason.  I’m tired and weepy and sad and really fighting the urge to indulge in some major retail therapy. 

Enough about me and my pity party…the good news is that they started to turn Rudy’s vent settings down today, had him on an one hour sprint this evening while he slept comfortably in my arms and he has been breathing on his own off the vent completely for the past hour.  He’s doing great at the end of a full day with two field trips!!!  He’s pretty excited to show off for Daddy tomorrow.  I guess it’s time to head to bed and get some rest…”afterall”, as Scarlet O’Hara would say, ” tomorrow is another day”.

Seeing Rudy intubated again reminds me of the question one of Livy’s fellow Brownies asked me at our last Girl Scout troop meeting.  I wear a button with Rudy’s picture each day and at our last troop meeting, one of the girls stared at my button throughout the entire meeting.  As we were saying goodbye, she finally came up to me with a concerned look on her face and asked, “Why do you tape your baby’s mouth shut?”.  I took a second look at my button and SHE’S RIGHT – it does look like his mouth is taped shut!!!  Oh my goodness, I’m so glad she asked for an explanation before going home to tell her family that troop leader Trish abuses her baby!  

I arrived back at UCLA late yesterday afternoon and quickly scooped Rudy up for a good hold before he had to have his next respiratory treatment.  Eventhough he was intubated again, I was relieved to see him relaxed and breathing comfortably in my arms.  He had a day of rest yesterday but started sprints again today (see video below).  There’s really no telling how long he’ll be on the ventilator this time but he cruised through his first two-hour sprint and today’s chest xray looks good so we’re headed in the right direction.  There is question about the fever he has had for the past couple of days…tests have been conducted and there isn’t any sign of new infection so we’re not sure what’s causing the fever…a bit problematic for Rudy as the fevers seem to get him agitated which then effects his breathing.  The Infectious Disease people are being called back in to consult so we’ll see.  

Rudy is scheduled to take a little trip to Interventional Radiology tomorrow for the insertion of an NJ tube through his nose to his intestines.  The hope is to start feeding him again through this tube but no specific timeline has been established.  All in all, I feel Rudy is in a stable place…having to put him back on the vent was a discouragement, naturally, but all part of the “big picture” process and we simply need to regroup and readjust expectations once again.

This is a big week…Rolf and I are heading up to the Bay Area tomorrow for dear Rixie’s memorial service.  Neither of us will be with Rudy for 4 days…the longest we’ve gone ever.  Although Rudy and the other kids in Santa Barbara will be in great hands, it is unsettling to leave everyone behind.  Please pray that Rudy will thrive and that Wilson, Max & Olivia will have a blast in our absence.  Rolf is officiating the service and I’ll be singing so please pray for focus and composure as we turn our attention toward a very special life to celebrated. 

All I can say is “Phew”…today has been a physically and emotionally draining day but good just the same.  At the time of my last post, Rudy was working hard to breathe on his own and Nurse Young and I spent a good bit of the day trying every trick in the book to get Rudy to calm down.  Various doctors were in and out checking Rudy, his numbers and his lab results multiple times.  The curious thing is that the test results and Rudy’s appearance didn’t match the numbers on the monitor…based on those, Rudy should have been purple!  Instead, he was pink and beautiful.  The big concerns were, as I mentioned earlier, his oxygen sats and the fact he was breathing so hard.  The sats were all over the map dipping down into the low 40’s at times which isn’t good and not going higher than the low-60s which isn’t ideal.  He did get a blood transfusion mid-afternoon and that seemed to help.  When I left for dinner, his sats were resting comfortably in the low-70s – better!!  We’re not out of the woods as Rudy’s little nose continues to flare and his tummy continues to retract with every breath but the RT did remove the ventilator from our room today which felt victorious.  After a certain amount of time, the ventilator is deemed “contaminated” and they have to remove it…if Rudy needs to be intubated again, he’ll get a fresh unit.  Rudy and I bellowed a hearty “goodbye” as if it’s gone for good nonetheless.

We are now at 6 hours!!!  I’ll report more details later but I thought you might enjoy our day in pictures and video!  Rudy is doing well, awake and comfortable…

Bath time fun

Nurse Mary making bubbles!

 See Rudy’s 1st bath (now, right side up!)  Part 1:

Part 2:

Call me and Nurse Denise crazy but we were convinced that Rudy was teething today.  Although it’s a bit early, he was showing the “typical” symptoms of a teething baby and the only thing that would calm him down was gnawing on my finger.  Denise and I were both amazed at how vigorous he “latched” on to the pacifier that Denise custom fit around his ventilator tube…he’s a strong sucker and I sure pray that what we saw today translates smoothly when it comes time to introduce nursing!!  Check out the powerhouse below:

Rudy had a good day in general.  He held steady at 10bpm for most of the day.   During the whole “teething?” episode, he did get himself worked up into a frenzy from which he couldn’t calm down and at that point they bumped the vent up to 24bpm for a couple of hours.  Before long, he was back down to 10bpm and even tolerated two one-hour sprints!!!  It’s 10pm and he just finished another sprint – his third one today.  He’s doing really well.  The plan is to continue with the sprints this week – increasing them gradually with the goal of possibly attempting extubation early next week!  Currently, Rudy is fluid- and infection-free so everyone feels we have a positive window of opportunity right now!

The team has decided to continue to hold off on his feeds until after he is extubated.  In the past, feeds to his gut seemed to add to the fluid issue.  Although Dr. Robert said everyone is anxious get going on the feeds again, the consensus is to focus on extubation and give the lymphatic system a little more time to heal and strengthen.  As of this morning’s xray, Rudy’s left side was completely clear of fluid and the right side had just a small pocket of fluid that was unchanged from previous xrays.  This is encouraging news and I’m praying in advance that when feeds do start back up again, Rudy’s lymphatic AND digestive systems will work GREAT!!!

What strikes me about today is the “normal” baby things that happened for Rudy…time sucking on a pacifier, sleeping in mommy’s arms for almost FIVE hours, crying and being fussy while maintaining good sats and blood pressure…  While the unit was packed and buzzing with activity today,  Rudy and I relished the moments of normalcy that we’ve not experienced yet.  Simple moments I hope never to take for granted!!!!