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…
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.
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…
…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
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…
“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.
Getting ready
Nurses Fay and Aliza all glamed up!
Nurse Kit Kat won a puppy--and the knowledge that you shouldn't raise your paddle unless you mean it.
Our recent slideshows have been a topic of discussion with the nurses over the weekend and several weren’t aware of their existence. I think they are now as I subsequently heard familiar music playing and then had to deal with weepy nurses. So they don’t get buried under the subsequent posts, I’ve put a thumbnail in the right column that will take you right to Greg’s page. They get even better on the 4th and 5th viewing!
Sorry for the gap in posts. A big reason for the delay was a very memorable Saturday evening which will get a post of it’s own shortly.
Here’s the latest on Rudy, who is doing much better, but is continuing his trait of confounding medical personnel. The team was waiting for cultures to come back on Saturday morning and none of those returned anything that would necessitate a course of IV antibiotics (which would keep us in the hospital). One culture showed Clostridium difficile (c.diff) in his GI tract, but that’s a relatively minor bacteria that can be treated with oral antibiotics. The diarrhea that is one of the key symptoms is running its course and he’s been very peaceful. At the peak of his distress the team needed to put him on the vent, but they took him off yesterday. This morning the plan was to observe him one more day and send us off tomorrow. This afternoon a few wrinkles may have surfaced as his sats seem low, even though he doesn’t show any signs of accompanying distress (high heart rate, rapid breathing, bluish skin). Dr. Robert did notice that his hemacrit level was a bit elevated on his labs when he came into the hospital, which may be a sign that the sats have been low for some time and the body worked to create more red blood cells to carry more oxygen. Of course, the other issue that’s been discussed is whether we’re closer to the Glenn than was originally thought. So, that will be the discussion today and tomorrow. Right now, Rudy is resting and his sats are back in the 60s on just 28% oxygen, which everyone is happy with–we’ll keep watching and decide whether it’ll be OK for us to go home and whether we should have some 02 on hand at home.
The one thing that is consistent in all of this is Rudy’s ability to confound. He was brought into the hospital because he was bleeding from his trach. While that could be extremely severe, it turned out to be benign and completely unrelated to the evidence of infection that got him admitted. The suspected infection turned out to be less severe, but now his blood oxygen levels–something totally unrelated to the infection–are of primary concern to the team as far as sending him home. We shouldn’t e surprised. Rudy likes to do things his own way–hope he gets to do it at home soon.
“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.
As much fun as it is to have Rudy home, there is one thing about the ICU we miss: the incredible people who work there. A diagnosis of HLHS will never be anything but a nightmare, but given this is our circumstance we are so grateful to find ourselves in the care of such a company of people. Rudy was in the hospital for six months and he’ll be back for more, but Trish and I will never fail to be moved by the fact that there are people of skill and expertise who do what we can’t–from complex surgeries, to watching for things we would never even know to look for, to sitting with him all night while we get some sleep.
Because we don’t want to forget any of them, and we want Rudy to someday see how his life was only possible because of scores of people who came around him, I’ve compiled a slideshow tribute (OK, I started to, but needed Greg Lawler’s genius to actually complete it). If the names and faces aren’t recognizeable to you, be moved by the sheer number of them. It’s very humbling to us how many people did what they did so that Rudy could have a chance, and we also regret that we didn’t get pictures of everyone. It figures that we somehow missed some of the regulars, so our apologies. As the file was too big to host on our blog, you’ll have to go back to Greg’s site and find the tribute video below Greg’s discharge show.
…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…
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. 🙂
Rudy's Beat 