“Life may not be the party we hoped for, but while we’re here we should dance.”

We’ve shared before about how this journey with HLHS thrusts us into ironies, dichotomies, and couplings of things one normally wouldn’t put together.  On Saturday evening, this included the surreal experience of wearing black-tie attire in the PICU.  Our dapper appearance strayed from the usual dress code of the parent tribe (jeans, sweats and t-shirts with unkempt hair and glazed over eyes).  Dressing in the little PICU bathroom in Rudy’s room proved a challenge…the only full-length mirrors are inside of the elevator doors so we weren’t quite sure how “put together” we looked until we were on our way out the door.

What was the occasion?   We were invited to attend Gala del Sol; a benefit for “Camp del Corazon”.   Camp del Corazon is a camp founded by one of the cardiologists here at UCLA, Dr. Kevin Shannon, that provides year-round opportunities for children with heart disease.  You may have heard of this camp if you’re an “ER” fan as it was highlighted in one of the last episodes in March.  We first heard about the camp when nurse Fay popped into Rudy’s room back in October and told us to put the summer of 2015 on our calendar.  When we asked why, she said “because that is when Rudy will be old enough to go to camp”.  🙂  Many of Rudy’s doctors and nurses donate their time staffing the camps each year.  Only recently has it sunk in that Rudy’s condition will likely limit the things we’ll permit him to do in life.  As much as we might want him to have adventures, realistically we’re not sure how comfortable we would be sending him some place without access to skilled medical care.  Well imagine a camp staffed by the top nurses and cardiologists in the world–where no kid with heart disease has ever had to pay to attend.  Where kids with limitations don’t sit out.

Saturday’s Gala was particularly special as our favorite surgeon, Dr. Brian, was recognized as the 2009 Medical Honoree.  That alone was reason to be there.  It’s not lost on us that we can say “this man saved our son’s life” without any tint of hyperbole.  We were priviledged to be involved with Rudy in the tribute video and so thrilled to meet Brian and Noel’s extended family (who, we were humbled to learn, are followers of Rudy’s Beat).  Originally, Rudy was supposed to be in attendance and we feared that his current setback would shelve that plan for all of us.  But with Rudy’s condition improved yesterday, the docs and nurses back at the hospital encouraged us to attend.  Rudy, after all, was in good hands.  So, with the older kids settled at home in SB with one of their favorite friends (thanks Nina), with Rudy safe in the PICU with special company (thanks Pammy), we decked ourselves out in a tux and “little black dress” and headed off to Universal Studios for the big event.

We enjoyed the hospitality of Nurse Aliza and her family and were pleased to see Rayme and Brett (Logan’s mom and dad) again–who we haven’t seen since his discharge in November!  Just as stunned as our doctor and nurse friends were to see us dressed to the nines, it was a change to see them in something other than scrubs and white coats.  The evening gave a hopeful vision for Rudy’s future which served to renew our energy for the journey ahead.  One of the most compelling moments was a camper video in which a precious 9 year old girl and her mother told of the 25 surgeries she’s had and how they live fully aware that life can be unexpectedly interrupted–or come to an abrupt end–because of her condition.  It was impossible not to hold back the tears as the camera followed her dancing around the house with her sisters.  Amidst the blond tresses flying about, she jumped close up to the camera and screamed out “I LOVE  LIVING!!!!!”

We don’t often get to put on clothes like we did last night, but what stays with us is the new array of emotions that are becoming part of us:  We wish HLHS never struck us, but we are so glad for these talented, loving guides.  We wish our son didn’t have this limitation on his life, but we saw kids whose lives have fullness of their own unique kind.  We don’t ever lose sight of the severity of Rudy’s condition, but see that life still holds grounds for celebration.  It might not be the party we hoped for, but we’ll figure out how to dance here. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

“Laughter through tears is the best kind of emotion.”  -Dolly Parton’s character, Truvy, in “Steel Magnolias”.   I LOVE this quote because it is sooooo true…and it’s for this reason that I’m so thankful for Rolf in times like these…he has always made me laugh but in our months with Rudy, Rolf’s humor has been downright therapeutic.  Yesterday was no exception…After a sleepless night in the hospital with Rudy, I headed home to Santa Barbara to pack a bag and get things organized for another indefinite stay in L.A.  Rolf was home when I arrived so we were able to debrief what happened together and talk through our plan for the next few days.  At one point, we just stopped talking about the details, looked at each other with tears in our eyes and gave each other a reassuring hug when Rolf quietly whispered in my ear “You’re kind of sticky”.  I burst out laughing…not quite the sentiment I was expecting but it sure was true!!!!  After a full day of appointments at UCLA the day before, discovering Rudy’s bleeding trach in the parking lot as we were getting ready to head home, running with Rudy in arm to the nearby ER, sitting and pacing and sitting some more in the ER from 3:30pm – 2:30am, getting Rudy settled in his PICU room and consulting with the team in the  unit upon our “middle-of-the-night” arrivial and then making the 2 hour car ride back home all without a shower or outfit change, I WAS kind of sticky.  Although yesterday and the night before were filled with great concern and disappointment, my theory of “fresh undies, fresh outlook” held true as a shower and hugs from my family helped me put Rudy’s latest hiccup in perspective.

We’re still not quite sure what happened on Wednesday with Rudy’s trach.  The general concensus is that the airway got excessively dry and began to bleed much like a bloody nose.  Initial tests show that the area is infection-free but we are still waiting on a few cultures to come back.  As Rolf already explained, what ended up getting us admitted was low oxygen saturations.  When I returned to Rudy’s bedside yesterday evening, he was not well.  He was battling a 103 degree fever, a heart rate over 200 for an extended period of time and he hadn’t slept or stooled in over 8 hours.  I was worried and pretty heartbroken for him.  Today, however, has been a new day.  Exhausted from nearly 36 hours with very little sleep, he has had long stretches of rest, he has been eating and stooling consistently and they dialed the vent down to pressure support so he is now initiating all his breaths again.  So, we just need to keep him as comfortable as possible and wait to see what the cultures show, hopefully, tomorrow.  If they come back negative for an infection, then we are looking most likely at something virul which we’ll just have to wait out.  Cardiac concerns have been ruled out and there is no plan to move forward with the Glenn at this point.  I’ll stay with Rudy through tomorrow and Rolf will come take his turn Sunday and Monday.  Hopefully, we’ll have a clearer idea of what our timeline will be for this hospitalization by Monday and we can plan accordingly.  We’re probably just dealing with a nasty bug but in “Rudy’s World” that can translate into serious concerns pretty quick and this experience reiterates to me how careful we need to be when he’s home and “out & about”.  It has been comforting to be with a team we are so familiar with and who know Rudy so well.  Word of our return to the PICU spread fast and we have had many visitors come by to share a hug and well wishes!  So sweet…

Thank you for your prayers over the past couple of days especially…we have felt covered and we are blessed.

…or, as Rolf likes to call it, our kitchen!  We all loaded into our car for the first time as a family of 6 and made our way to our Sunday tradition…In ‘n Out!!!  Since it is our family’s favorite, we figured it was about time Rudy experienced it.  It was, however, a bit overwhelming for him…he was pretty grumpy all throughout dinner and the minute we walked outside, he relaxed in my arms.  I guess a place like that does take some getting used to.  He wore himself out and fell asleep shortly after we got home.  Everyone else is tucked comfortably in bed after a full day of swimming fun…YES, it was hot enough to swim so today marked the official opening of our pool this season.  It’s supposed to be 80 degrees tomorrow and the kids have already asked if they can go swimming again after school…I smell summer comin’.  Rudy experienced a number of new sights and sounds today…I wonder what his little mind is thinking?

 

 

The past week and a half has been filled with a number of doctor visits and with each new consultation, I hand over Rudy’s discharge summary and we skim the details of his 6 month stay in the ICU.  That coupled with the time I’ve spent going through 100s of pictures for the slideshow I’ve been working on are staggering reminders of all that Rudy has been through.  I remember praying over and over on those darkest days “Please let us get him home…just for one day”.  I don’t mean to sound overly dramatic but I didn’t want Rudy to die without feeling the sun on his face, without hearing the crash of waves at our nearby beach, without experiencing the sights, sounds and smells of home surrounded by his 3 older siblings.  I wanted all of this for Rudy but, to be totally honest, I wanted it for our family as well…I wanted our family to experience life together with Rudy.  There were times in our journey since Rudy’s diagnosis that I hoped for just one day with him outside the confines of the hospital walls and that anything beyond that would be “icing on the cake”.   Well, here we are 10 days post-discharge and knee-deep in icing, so to speak.  🙂

Life in the CTICU/PICU taught me to literally take life one day at a time and to NOT take for granted any time we had with Rudy.  The hundreds of hours spent in the hospital allowed me and Rolf to be centrally focused on Rudy’s condition, to capture every moment as best we could and to take the time to process what was happening on the blog…luxuries, really, because all helped me to stop and cherish what’s important.  Well, I’m settling back into my home that I enjoy with my family that I love and deeply grateful for the 10 days we’ve had Rudy home with us.  In the midst of all the adjustments of having Rudy home and accepting my new role at home, I feel the challenge for me will now be to apply the lessons I learned in recent months to our family’s life from this point forward…that as the demands of “normal” life start to creep back into my focus, my commitment to take life one day at a time, not sweat the small stuff and truly cherish my husband and ALL my kids remains in the forefront of my mind and heart.  I know it sounds cliche but whether we are faced with a life-threatening condition or not, our days are numbered and I want to respond to life not as if I’m entitled to tomorrow but, instead, as if tomorrow is “icing on the cake” no matter what it holds.  Unfortunately, this is so much easier to articulate than it is to practice…how quickly my good intentions fly out the window when a phone call with a not-so-helpful customer service rep from a medical supply company makes my blood boil OR when I begin to resent my responsibilities in the home out of sheer exhaustion…a worthy challenge, indeed!

On the Rudy-front, we have had a good week.  As I mentioned, we’ve been to a few doctor appointments and a few pharmacies.  We’re in the process of weaning him off methadone (withdrawal treatment), prednisone (steroid) and diuril (diaretic) but we’ve added two heart medications as ordered by the local peds cardiologist.  The daily schedule of meds, diaper changes, trach and g-tube care, periodic suctioning, time on the mister, feeds, etc still makes for a full day but it is easier today than it was last week which makes it safe to assume it will be even easier next week.  He still isn’t smiling but his brow isn’t furrowed continually so I think he is lightening up.  I haven’t ventured outside home much except to go to doctor appointments but even that feels less intimidating.  Rudy had his first fitful night last night since being home which left me and Rolf a little foggy-headed today and he remained pretty uncomfortable for most of the day so we’ll keep a close eye on him…not sure whether it’s withdrawal symptoms from the methadone wean OR teething (two teeth have now cut through!) so we watch and wait.  He is a bit backwards…mad and fitful until we got to the diagnostic lab today and then he fell asleep while they stuck him with a needle for the blood draw!!  Funny boy…

FYI:  Stay tuned for upcoming details of Rudy’s Debut Party we hope to have in mid-May…an opportunity to have his baby dedication as well as thank all of you who have supported our family during this time and helped pray Rudy home!!!!  Family, Friends, Faith – many reasons to celebrate!  We sure hope you can join us…

‘Working on a longer update that I’ll post tomorrow but I couldn’t let this precious scene pass by without documentation…Rudy experienced the view from Olivia’s top bunk this evening.  We’re not quite sure what HE thought of the whole thing but big sis Olivia was thrilled.  Our adjustment continues but we are blessed in the process…Thank you for your prayers!

 

 

We end this beautiful Easter Sunday with the three older chicks nestled in their beds and the littlest chick nestled on Daddy’s lap.  We celebrate our Risen Lord today so thankful for the presence of hope in our lives because of His sacrifice…

We had a good weekend.  Rolf and the boys gave some much-needed attention to our yard yesterday afternoon and it felt good to get some chores done that are long past due.  Rolf and the kids went to an outdoor Easter service this morning while Rudy and I celebrated at home.  We enjoyed a low-key afternoon and our first grilled steak dinner of the season with a good friend this evening.  Rolf loved being home on a weekend for a change and I love that I’m not scurrying around this evening getting my bags packed for another week at the hospital.  Rudy is doing well…no fever since Friday and very calm when his tummy is full and his diaper is dry…we’ve experienced a good dose of “normal” this weekend and it does the soul good.  Wilson gave his first bottle to Rudy,  Max changed his first diaper and Olivia is quick to supply Rudy with many kisses so eventhough we’re all challenged at times with the many adjustments we’re making, love for Rudy by all is quite evident.  ‘Wishing you love and peace this evening!  Happy Easter…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We started Good Friday with some early morning playtime before the older kids headed off to school.  Rudy was sure mesmerized by his older brothers.  All in all we had a good day although we did have a bit of a scare early this afternoon.  Feeling a little “house rot” today, Rolf and I ran a couple of errands together and when I lifted Rudy out of his car seat when we returned home, he didn’t look right to me.  His eyes were somewhat rolled back and he was very labored in his breathing.  We got him inside and suctioned him…when that didn’t work, we changed out his trach and suctioned him again…that didn’t help either so I took him to the pediatrician right away while Rolf waited for the others to get home from school.  I was pretty nervous driving over to the drs office and wondered if the better call would be to go straight to the ER…I wasn’t sure.  He was working hard to breathe but wasn’t blue so I stuck to the plan to get to Dr. Abbott’s.  His office was expecting us and got us into a room right away.  I felt a little ridiculous as I burst into tears when his nurse came in to check his temperature.  She was sweet to reassure me that he was going to be okay…Dr. Abbott came in shortly after and checked him out thoroughly.  As is the norm with Rudy, it wasn’t clear what was wrong.   His oxygen sats were good, for Rudy, and there didn’t appear to be any kind of obstruction in his airway.  He did, however, have a decent fever so we gave him Tylenol and a cold compress treatment and waited…Rudy started to calm down about 20 minutes later.  At that point, he was an hour late for his methadone dose and a feeding so it was hard to know if he was struggling or just agitated.  There wasn’t an obvious reason for the fever so the plan is to watch him closely over the weekend and if another fever spikes causing respiratory concerns, we’ll need to go to the ER here in town.  I asked Dr. Abbott if we were right to come in or if we overreacted and he said, “No, you were right to come in.  I was very concerned about how he looked when I saw him initially but he’s a different little boy now”.  I don’t know if I’ll ever get used to the sudden twists in Rudy’s condition but that is part of “life with Rudy”, I guess.  Rudy has been sleeping soundly since we got back home…he is tuckered out!  ‘Praying the fever was a fluke and not the start of a bug of some kind…we sure don’t want his body to have the added stress of having to fight something off.  I’m praying for continued peace as well because I sure don’t want to “live in fear” of what may happen in the future.  Today rattled my confidence a bit but I’m hoping a good night’s sleep will cure what ails me!   🙂

Once again, it’s hard to believe another little chick is another year older!  It was a full day for Wilson with school and a good bit of homework this afternoon but we enjoyed a yummy home-cooked meal (Wilson’s request) together, a trip to Carvel ice cream for dessert (I stayed home with a sleeping Rudy), and Wilson had fun opening gifts from family and friends…he really enjoyed being remembered.  Happy Birthday Wilson…you make us so very proud!!

Rudy had another good day here at home.  We’re tickled pink we’ve made it 48 hours without having to go back to the hospital.  Both Rolf and I feared we’d end up having to go back for some reason but…so far, so good!  I mentioned earlier that he is sleeping well through the night and we certainly pray that trend continues.  He has also had fairly regular success at eating his full daytime feeds from the bottle!  In the hospital, he would down about half of his feed and then we’d have to put the rest through the feeding tube but several times since we’ve been home, Rudy his finished the entire bottle in less than 40 minutes which is his time limit…that is VERY encouraging to me.  We had our first pediatrician’s appt. today and it was comforting to have a professional look Rudy over and confirm that he is doing well.  Dr. D. Abbott spent a good bit of time with us and was very thorough going through each detail of Rudy’s discharge summary.  The bottom line is we have a number of specialists we need to make contact with in the coming weeks.  Although we have follow-up appts set with doctors down at UCLA, we are going to try to get appts set up with specialists here in town as we’ll need to establish relationships with these doctors long-term anyway.  The trick will be to get appointments set up in the next couple of weeks…if time is an issue, then we always have the UCLA appointments to fall back on.  Rudy will need a follow-up with an ENT doc for his trach, a GI doc for his g-tube, Dr. of endocrinology for his low thyroid function, Dr. of immunology because of his weakened immune system and a pediatric eye doctor for what we hope will be just a one-time visit – there is concern about Rudy’s tendancy to look toward the left and not track consistently AND, of course, he’ll have his on-going relationship with his cardiologist.  So, I’m praying we end up in good hands on all fronts as it seems there will be many of them!

Thankful for a quiet day…and thankful for you!   Thank you for all the wonderful comments on the blog and emails!  You are dear to share in our joy and celebration…