…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.
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…
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.
…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…
As the big kids headed off to school this morning, Wilson looked back at me, gave me a wave and said “Bye Mom, we’ll see you when we see you”. Eventhough everyone was disappointed Rudy didn’t come home with Daddy yesterday and I had to return to Los Angeles, all were agreeable and well-adjusted this morning. -Good kids.
By the time I got to UCLA, Rudy was breathing room air. Dr. Andy wants to observe Rudy for 24 hours without oxygen before making plans to discharge him. As of early this afternoon, the plan was to send Rudy home tomorrow morning after rounds. Rudy did have a few bouts with low sats throughout the day and then this evening, his sats stayed in the 30s consistently for over 12 minutes!! He had to be put back on oxygen and is now resting with sats in the low 60s with 30% oxygen. I’m not quite sure what this means for our plans to discharge tomorrow…I’ll keep you posted and publish an update in the morning with our plan for the day. It goes without saying that I hope the gang at home sees us sooner rather than later! 🙂
When Trish told me she went ahead and bought an extended parking pass here at UCLA last week, I wondered whether it would be cost-effective. Well, turns out it was as we’re going to be here a bit longer. Rudy’s o2 sats have continued to be low throughout the day and he hasn’t been able to wean off of oxygen. The culprit is atelectasis, a fancy word for a kind of partial collapse in his lung. Not as scary as it sounds, but it really would be best to send him home breathing room air (21% O2), he’s at 30% right now.
The best theory I’ve heard for the pathology of this is that he very likely had some kind of virus (indicated by high fever) which ran it’s course but left him needing to recover his respiratory function. Dr. Mary said that the average baby is sick 40-50% of their first year with some kind of bug or another, but since Rudy is a bit compromised they can upset his system more than normal kids. In addition, the trach doesn’t allow him to maintain pressure in his lungs like the rest of us can, so this can cause some of those small passages in the lungs to close down. But all of them need to be working to bring sufficient oxygen into the blood.
The good news is that Rudy doesn’t appear to need a major intervention (like the vent) to push air in. He does get regular breathing treatments and suctioning, but the key treatment is known as “Chest PT–Q3”. Bypassing all of the sophisticated technology and highly trained people here in the ICU, Chest PT is essentially the act of playing the bongos on Rudy’s chest and back for five minutes every three hours to loosen up his lungs. I politely listened while Nurse Carlin gave me my orientation and was pleased with how quickly I caught on–there’s even a rubber percussive thingy I can use if I want to change up the sound. Rudy actually really likes it and just lays back and closes his eyes while I thump around. So far there isn’t a written policy about impersonating Ricky Ricardo, but if I keep it up it may fast become a guideline. So, this is how we will combat our newest foe: Atelectasis, you have met your match–Babaloo!!!!
It’s just past 9PM on Monday and I’ll give Rudy his night bottle and then make the drive home in order to change assignments with Trish. Please pray that we’ll get over this hiccup and be back together at home again soon.
“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.
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.
The kids are in bed and I’m trying to take just a bit of time to gather my thoughts before sleep comes. Quite a day we’ve had.
When Trish got to UCLA just before 7pm, Rudy was clearly in a different state than when she left this morning. He was agitated, running a fever and Nurse Christine said he had a couple episodes where his heart rate was racing up over 200bpm–all giving more credence to the onset of an infection. After some work she was able to get him settled, off to sleep and even catch a few winks herself. They haven’t started any major lines yet, but may come in later tonight and get an arterial going.
I’m admittedly dazed in the wake of this turn of events. I don’t think I’m all that worried about Rudy right now. I don’t like the fact that he’s in distress and so uncomfortable, but as long as the docs continue to feel that he is stable from a cardiac perspective he does fight his way through these things. It just takes time. Time. Here we go again.
I’m once again struck by how little of this journey with HLHS takes place on our terms. Even if the intial diagnosis was a surprise, I think we somehow thought that from there we would be able to prepare and approach this thing methodically. I guess two weeks away from the hospital made me forget the reality that Rudy’s fight started earlier than we planned and lasted far beyond what we allotted. I guess I subconsciously assumed we were going to be able to schedule this thing a bit more from this point on, only to find ourselves thrust back into another episode yesterday afternoon. Storms never come on our terms–we just respond to them when they come.
Tonight I’m aware of the aches. I hate that my kids had to come home from school and be confronted with a new cycle of tag-team parenting just as things were getting routine again. Sweet, super kids–and maybe I’m just reading things into their behavior, but it sure felt like there was an emotional edge exposed tonight in our interactions. They deal with it the best they can. And now that they’re asleep the house feels really empty. I’m tired but also at a bit of a loss with what to do with myself–the daily schedule of meds, treatments and feedings isn’t there anymore. But beyond that, I just plain miss Rudy. I always wanted him to come home, but the two weeks he was here changed the intensity of this. Now, it’s not just that he isn’t here, it’s that he’s absent from where he belongs.