Ending CHOC’s CVICU Streak: Waylon’s Health Update – 3 Steps Forward, 1 Step Back.
TLDR:
Waylon’s progress is trending up, but not without setbacks.
Waylon is eating on his own – incredibly crushing bottles of milk way ahead of schedule.
Donavon is suspicious of Butterflies.
Thank you, Elyse and Jennifer, for your support with Donavon!
The details:
Hello everyone, we first have to start this message with an apology. The CVICU (Cardiovascular Intensive Care Unit) here at CHOC had a stunning 100+ day streak of not having a patient contract a blood infection from a central line. Sadly, that streak has come to an end. Even sadder – it was Waylon who was the victim of the blood infecting bacteria.
During Waylon’s surgery, a central line was set up to his neck, this line was in for about a week to help administer the vast amount of drugs, food and fluid to our sweet boy. While this line nurtured him and was an important part of his recovery from surgery – at some point it became contaminated by a skin dwelling bacteria and led to a blood infection.
Hospitals can largely avoid these through intensive practices, cleanings, bandage replacements, etc. and this therefore falls under the category of a “Hospital Acquired Condition.” However, since the source/method of contamination etc. are always up in the air – these kinds of infections are basically a known risk of undergoing such a massive surgical procedure as the open heart surgery Waylon needed to live his life. So, chalk this one up to a – well that sucks – delay in Waylon’s recovery – one that will see him on drip antibiotics here at CHOC for another 7-10 days or so. To further this setback, the site of infection also became the site of a non-occluding blood clot. This clot – so near his heart and brain – was another unfortunate development and another time to use the “known complication” language. Could have been nice to avoid, most avoid, Waylon unfortunately did not. The clot will see another complication of Waylon’s recovery and yet another medication - this time a shot to be administered twice a day – for a handful of months. The blood thinners Waylon will be on will allow Waylon time to break down the clot on his own – while preventing the clot from getting worse and preventing the formation of additional clots.
These steps backward are discouraging and certainly add to the length of our stay and the amount of medical things that Joyce and I have had the privilege to learn about. However, we would never exchange them for the life saving care rendered here at CHOC, and to some extent have to know that these complications could have happened at any of the wonderful centers in So Cal we could have chosen to have the procedure (all of which are some of the best in the world at what they do). Are there any other explanations for some of these conditions? Some people say that CHOC is becoming haunted by the ghost of Choco the bear, the hospital’s lovable teddybear mascot. These conspiracy theorists have implied that the hospital acquired conditions could be the wrath Choco inflicts on his young victims as he angrily bear-crawls the halls of Choc Hospital. I for one will not sign on to such superstitions. It is true that CHOC has recently merged as the junior partner in a Children’s Hospital megadeal with Rady’s Health San Diego Children’s hospital. As such, CHOC will be Rady’s Health CHOC Children’s Hospital. Word has circulated that Rady’s logo – a kite – would replace Choco the Bear. This loveable bear can in fact be seen in new marketing material holding tightly to a kite that appears to be sailing up into the air.
Studious observers have read into the kite’s ascent and CHOC’s junior status that the kite is indeed sailing Choco up and away into parts unknown – perhaps mascot heaven – perhaps to an altitude at which Choco’s fall would be terminal. Are there any hints as to Choco’s haunting besides the Hospital Acquired Conditions? There are, dear reader, there are. Many times, while in the two units in the CVICU – I have witnessed Choco visit. The room will be completely empty and all of a sudden – in both units 639 and 642 – the automatic faucet – which is ridiculously hard to turn on - will all of a sudden start running. This will be a shocking development because in the otherwise empty, silent room, the faucet will come to life at full force and last for what seems like an eternity – as you feel Choco’s spirit in the room which has suddenly grown cold. Then the faucet will turn off and everything will seem to go back to normal. Do others see this happen? Yes, all the medical team in the CVICU knows about the suddenly running automatic faucets – there is no explanation – and the haunting is met with a casual shrug of the shoulders. We will keep you posted as we learn more about this situation.
Finally for this post, this week saw the incredible Elyse – Joyce’s cousin and maid of honor at our wedding – fly in from Tucson, Arizona (known as The Old Pueblo) and spend her week of vacation assisting our family by helping care for Joyce, Donavon, and Donna. Elyse brought her can do attitude and wonderful uplifting spirit and spread joy into our household. Elyse rapidly because one of Donavon’s great friends and he eagerly showed her nearly every one of the hundred+ matchbox cars he values above all else. Thank you, Elyse, for all your support and love – and substituting a relaxing vacation for supporting our hectic lives. Elyse also handknit painstakingly a beautiful blanket for Waylon.
Additionally helpful has been Joyce’s aunt and Elyse’s mom, Jennifer. Jennifer is a superstar and has been helping us day in and day out since the flood. Jennifer, along with Donna, helped to wash and clean all the vast amount of impacted clothes, blankets, etc. Jennifer was on hand for the initial days after Waylon’s birth to assist Donna with all the caretaking needs of Donavon and has helped organize and care through all the chaos ever since.
Thank you, Elyse and Jennifer!
Tomorrow will see Doreen’s arrival – another of Joyce’s aunts – who is flying in all the way form Golf Shores, Alabama (city slogan – Small Town, Big Beach) – to stay with us for the next few weeks.
Joyce and I are so blessed by all the countless ways people have supported and cared for us – from prayers, to meals, to time spent on the phone – etc. Thank you all for all your love and support – it has made all the difference for us – we couldn’t have gotten through this without you all.
Love,
Waylon, Donavon, Joyce and Mitchell.
P.S. Knock it off Choco – that’s enough – go inflict your Hospital Acquired Conditions elsewhere!
Mitch’s update above. A few thoughts from Joyce here(7/25):
First, I want to apologize for Mitch’s Choco rant. I considered removing it, but I know many of you enjoy his shenanigans—so I figured I’d let it slide.
The recent setbacks really threw me for a loop, but I’m feeling more settled now that we have a plan in place and, most importantly, that Waylon is doing well and feeling better.
Today was another busy day for our sweet boy. He continues to get pricked, scanned, treated, tested—and, of course, have his sleep interrupted. But today also brought some new and surprisingly fun experiences. Dare I say, the second half of our day felt almost like a spa day.
We were visited by the Physical Therapy team, and Waylon got a gentle massage. I also received some great pointers on how to care for him over the next few weeks. For the next 6 weeks post-op, we can’t lift him under his arms or pull him up by his arms. Instead, we’ll use the classic baby swoop—supporting his head and bottom—to protect his chest. We’ll also be helping him open up his upper body, as some kiddos can feel tight or restricted after surgery. PT even brought in a baby swing we hope to get him into soon. He’s still hooked up to wires and needs to stay close to his equipment, but we’re excited for him to experience new positions and perspectives—maybe even get a glimpse of the amazing view from our window.
Waylon also had a wonderful music therapy session today with our new friend Amy, who played guitar and sang to him for about an hour. He also had a breathing treatment to help clear his airways. Our amazing lactation and feeding team stopped by as well, and Waylon worked hard to nearly finish an entire bottle on his own—a huge milestone and such a rewarding transition to watch. To top it all off, our incredible nurse Taylor worked some magic on our room, making it feel fresh and new. She rearranged the furniture so we can more comfortably hold him. There’s now soft, calming music playing while Waylon naps, with scenic background views projected on the TV.
His wakefulness and alertness have skyrocketed this past week. He’s tracking and engaging more and more, and it truly feels like we’re moving into full-blown baby mode which has been a lot of fun.
We are enjoying his company and getting some good laughs in, feeling better and praying for no more bumps in the road so we can get him home soon!