One Home, One to Go

John-Raven was cleared to go home today and discharged this morning. William is continuing to linger, but is definitely still on the path to recovery. He just likes to go at his own pace. 

John-Raven and the Case of the Mysterious Fevers

Long post, so here's the TLDR: The boys were moved out of the PICU and to the regular floor, and they're doing okay. We've been working on getting them out of the hospital, but we aren't quite there yet, and it could still be a few days. Details below.

William's continued presence here isn't a huge surprise -- sometimes, he just takes a while to get weaned off of the supplemental oxygen. He often finds himself on just a little bit of oxygen (a quarter to a half liter) and can't quite get off of it. That's the case again, and it's where he's been for a few days now. He's happy and giggly and mostly his usual self, aside from a touch of low-grade fever, so it appears that he's on a continued course toward getting out of here, even if he is a bit slow about it. If I had to guess, we're probably looking at another day or two.

John-Raven, however, has been bit of a puzzle. He was all set to be discharged Friday. In fact, the doctor had actually written up his discharge paperwork when we noticed his heart rate was up, he was running a low-grade fever, and he was lethargic. He just wasn't himself. We notified the doctor that we weren't comfortable with his status, and he canceled the discharge orders. We continued to watch him and let him rest. Over the course of the day, his heart rate leveled off, his fever went away, and he started acting like himself again.

Then came Saturday. We were hoping he would be better and get discharged. But when we got him up that morning, his heart rate was way up, he was running a fever (still low grade but higher than Friday), he was lethargic, and his oxygen sat levels were way down. We put him on oxygen and let him rest. Over the course of the day, his heart rate leveled off, his fever went away, and he started acting like himself again.

Then came Sunday (today). We weren't taking anything for granted, so early in the morning, we checked his vitals. Want to take a guess at what we found? His heart rate was up, he was running fever (climbing into the 101 range this time), and his oxygen sat levels were way down. We put him on oxygen and let him rest. Over the course of the day, his heart rate leveled off, his fever went away, and he started acting like himself again. 

We don't know for sure what's going on with him. We aren't prepared to take him home if there's a chance these "mystery fevers" might get worse, and the pattern so far suggests that they could (since his temp has been higher each day, and he's had more trouble with his oxygen sats). It would make more sense if the fever and low sats were continuous, but the way he returns to normal throughout the day has left his status in question.

Interestingly enough, William has had similar episodes about once a week since last summer -- fever, increased heart rate, and low sats, all of which return to normal by late morning or early afternoon -- and although we haven't figured out what William's issue is, we've learned how to address it when it comes up. What's happening with John-Raven seems similar, with the difference being that it's happened three days in a row, and William's episodes have historically been confined to a single day. 

So for now, we're here in the hospital, watching the boys closely and trying to help them get through these last stages of whatever so we can all get back home. 

The Return of RSV

RSV De Ja Vu? Unfortunately. 

Looks like we're the lucky winners of two round trip tickets to Cook Children's Hospital, courtesy of RSV. The trip comes complete with hospital-grade accommodations and round-the-clock medical services. Plus, you get the all-inclusive side trip to the pediatric ICU. You just can't beat this travel package, folks! (And apparently, it's quite popular right now. The hospital is slammed with RSV cases.) 

But seriously...

Yes, both boys have landed in the hospital again. John-Raven was admitted late last Sunday night (a week ago today), and William was admitted Tuesday. Both boys are currently in PICU, but they are fairly stable and in decent spirits (as you can see in the picture). For now, it's all about managing the effects of the virus. 

For those who recall, it was RSV that hit them a little over three years ago, sending both to the PICU with John-Raven spending several days on ECMO. Thankfully, the boys seem to be handling it better this time, so far.

Make no mistake, they've been very sick, and they still have a long way to go. But we're hopeful they'll be able to pull through without all the drama of three years ago. 

Thanks for your support and concern, and we'll provide updates as events occur. 

Wins and Losses

My Fantasy Football team this year is, at best, mediocre. This comes as no surprise, really. Let me explain.

For those unfamiliar, the way fantasy football works is basically like this: Each team in a league has a roster of players, and each week the statistics for each of those players is added up to calculate your team's total points for the week. Each week, your team is pitted against another team in the league, and if you have more points than your opposition for that week, you win your game. The wins and losses are tallied throughout the season, which determines who goes to the playoffs to battle head-to-head in a kind of fantasy Super Bowl.

I used to spend a lot more time managing my team than I do now--contemplating roster changes, picking up promising new players off the waiver wire, and dropping players who underperform. But these days, I do as little as possible to maintain my team. I just don't have the time to bother. I'm a bit too busy playing another game, one with greater consequences and a more important outcome.

I can't help but see an unexpected correlation between fantasy football, inconsequential as it always was, to how we manage the boys' health from day to day. Sometimes we're on offense, being proactive about making changes to feeds, breathing treatments, positioning. Sometimes we're on defense, reacting to random fevers, drops in oxygen saturation levels, or apparent lack of energy. We are constantly monitoring vital signs, overall energy, and mood, making adjustments as necessary. Every morning when I wake them up, I'm checking the score: Are either of them running a fever? Have low oxygen levels? Do they seem happy? Rested? Ready for the day? Every afternoon, excited and anxious when they get home, I do the same: Are they happy and energetic? Fussy and tired? Will they need extra breathing treatments and CPT? Will we need to call a doctor for advice?

Back in the days when I was more active in my fantasy football league, I was elated at the close wins and felt defeated by the losses. When I lost, I looked back at my roster and tried to figure out what changes I could have made that would have produced a better outcome. Now, every day is game day around our house, and of course, the wins and losses are vastly more meaningful than in any fantasy sport.

Since September, William has had to stay home from school or get picked up early (due to being lethargic and/or needing supplemental oxygen) at least one day a week, sometimes more. (John-Raven had his brief three-day spell in the hospital, but otherwise, he hasn't really had to miss school.) William finished a round of steroids on Friday, so as always, we're keeping our fingers crossed that he'll still be strong without them. So far, so good. We're starting off this week with a mark in the Win column because he was good to go to school this morning (a Monday, which is one of his common stay-home days, tied with Fridays). With careful planning, and some luck, our team will perform well this week and no one will end up on the Injured Reserved list.

Dryer Settings, Dance Steps, and Another New Normal

“Normal" is a setting on your dryer. 

This saying is often repeated among our circle of families with kids who have special needs (though not exclusively so -- I’ve heard it elsewhere). We are constantly reminded of the truth of that statement, and recently, we’ve had to recalibrate our sense of normal once again. Home oxygen, a continuously monitoring pulse oximeter, and private duty nursing are the newest additions to our daily lives. The first two are the result of William’s ongoing respiratory issues. The third has been long overdue.

These new things and people are much needed, but getting used to them still isn't easy. As if our smallish house weren’t strained enough for space, bringing in more equipment and people means we’re often doing strange little dances in rooms and along high traffic paths, moving boys and objects as needed. We limbo through the living room, breakdance in the bathroom, can-can at the kitchen, disco along the den, hokey-pokey down the halls. Sometimes, our movements are choreographed and we smoothly change positions and roles. Other times, we dart and dodge awkwardly around each other like beginners trying to find our footing and get in sync. We know the music, but some trickster is always changing the beat. Maybe Gloria Estefan was right: The rhythm really is gonna get you.

Adapting to these new steps has been tiring and a little stressful, but with each passing day, we acclimate to how they fit into the grand scheme of things. But isn’t that what life is, really? Adapting to change? The moment you get used to something, it becomes something different. Change is the only thing we can ever really count on.

So we'll keep learning and growing and getting used to whatever is next, because that’s what we do, and that’s how it is. We’ll keep dancing and watch for the changes. We’ll ignore the setting on the dryer. Dancing is more interesting than laundry anyway. And a better metaphor.  

And we're still on facebook.com/thecobbquad

It's been a year and a half since the boys' long stay in Cook, and we're still using The Cobb Quad page on Facebook (at facebook.com/thecobbquad).

So if you're looking to keep up with us, please go there. Thanks!

Looking for updates? Visit facebook.com/thecobbquad for info.

For those who don't know, the boys suddenly became ill at the end of November and were immediately hospitalized for RSV and a respiratory infection. We've been in the hospital ever since - 22 days as of this post - most of it spent in the pediatric ICU. Because of the sudden and severe nature of the boys' illness, we began making posts on a special Facebook page set up by a friend at https://www.facebook.com/TheCobbQuad. (Apparently you don't have to have an account to view the page.) We may go back at a later time and update this blogspot page, but for the time being, we'll use the Facebook page.

Thanks!

The Cobb Quad