Pneumonia and a G-Tube

What a week! Kyle is home after spending eight days in the hospital--first due to pneumonia, and as he recovered from that, we decided to go ahead with his g-tube (feeding tube) surgery while we were there.

He was admitted with pneumonia last week after his O2 sat was down to 82% on room air and a chest x-ray showed how junky his lower left lobe was. We spent the first four days on Q4 respiratory treatments and antibiotics and no roommate--whee!

The next four days involved an upper GI, the g-tube surgery, and recovery. The worst part was dealing with his pleas to eat food the day of his surgery (he was NPO from 4am until essentially 2pm the following day). He woke from anesthesia begging for Goldfish crackers, and we couldn't let him have any. I may or may not have snuck him a few Goldfish here and there when the nurses weren't looking. It's ironic what an appetite the kid had on the day he couldn't eat due to g-tube surgery.

This was definitely our most pleasant hospital stay yet. He wasn't contagious, so we were allowed to spend time in the 4th floor playroom, the cafeteria, and even go outside and enjoy some sunshine. And it wasn't flu/RSV season, so the nurses were happy and accommodating and instead of impatient and understaffed. It almost felt like we were on vacation at a resort. Almost.

We made the decision to take him to the E.R. just in time--if we had waited another day or so, he would have been even weaker (he refused to eat for two days before) and probably would have taken a lot longer than four days to recover. It was so nice to know that discharge would be "in a day or two" rather than "in a week or two".

And many thanks to my friends who live or work downtown who kept me fed and kept me company during our stay!

Photos of our stay, in chronological order:

Day 1. Feverish and ill and feeling yucky.

He used to be quite fearful of elevators (those impatient elevator doors, ugh!), but he got really good at navigating in and out of them by the end of our stay.

Kyle and his lady poodle friend, Dorothy. The volunteers at PCH came almost everyday with a new therapy dog to cheer Kyle up.

Getting ready to watch Vancouver beat San Jose in Game 6 of the NHL Western Conference finals. Go Canucks Go! (He's also a Diamondbacks baseball fan.)

Kyle was understandably cranky and hungry on the day of his g-tube surgery. The anesthesiologist saved our sanity by putting versed in his IV--the kid went from ornery and fussy to totally high in about fifteen seconds. Hilarity ensued.

Taking a jaunt outdoors, one day post-op.

The view from our window of the tower that makes up the new and improved Phoenix Children's, which had it's ribbon cutting ceremony just yesterday. It's pretty rad.

Kyle hauls ass to the elevators the minute his nurse removed his IV and handed us our walking papers. He didn't need much prompting to get out of there...

Many thanks to the RN's and PCT's who made our stay a pleasant one, and much thanks to Dr. Weiss and his magic tricks. Kyle still talks about them. :)

This is Why I Walked.

One upon a time, a beautiful newborn boy was diagnosed with a terminal disease. His parents did everything in their power to advocate and care for him, so despite the horrific rate or mortality, he survived longer than many with his disease. When he was two years old he was granted his Make A Wish trip. For nearly a week, he and his family—including his newborn baby sister—enjoyed Disneyland in that magical way to which any family with young children can relate. Last week, Jonas and his family returned from their amazing Disneyland vacation. A couple days later, Jonas caught a cold. It quickly settled into his lungs and he became critically ill. On Thursday, November 18, 2010, Jonas Coleman passed away. A week after his Make A Wish had been granted and a week before his third birthday.
The day after Jonas died, my own three year old baby girl found herself in the hospital. She’d had a cough for days before that, but after lots of albuterol and Cough Assist she seemed to be on the upswing. In the end her cries of an earache convinced me that something was really wrong, so I casually drove her to Urgent Care where she began vomiting, aspirated, and her O2 sats plummeted while her heart rate and respiratory rate skyrocketed. We were only in the building for three minutes when the staff called an ambulance to take us to the hospital. Lauren improved quickly the next day—despite fighting what we know now was pneumonia—and we don’t know why she got over it so fast. But her timing was uncanny, given Jonas’ passing just the night before.
These kids are so fragile when it comes to their respiratory systems. We do everything we can to keep germs away from them while allowing them to live full lives, but we can’t shield them away from all of the bad stuff all the time. It’s a fine line, and as a parent it’s an exhausting one to manage.

This is why we walked yesterday. Lauren was sick in the hospital for the 5^th Annual Walk N Roll To Cure Spinal Muscular Atrophy. Jonas had SMA. Lauren and her twin brother Kyle have SMA. And Jonas’ newborn sister, Maggie, has SMA. I once heard some expert say that SMA is the most common rare disease they’ve ever seen, and my own experience supports this. The twins were diagnosed with SMA two years ago. I can no longer count or remember the names of the babies who have died of SMA since then. For a while I could, but the volume of souls affected by this terrible disease is so high that even I can’t keep up. All of these kids, individually, are why I walked yesterday. Our Team Double Trouble raised over $2,000 for the cause, and my personal friends contributed raffle prizes which collectively raised another $500+. I used to think that SMA only affected us—our family, our kids, our pocketbook. It felt so isolating back then. Isolation in such a severe situation was overwhelming. But it feels good to know that we’re raising awareness in a big way—and raising money for the cause--and so MUCH money, and in such a rough economy. Thank you from the bottom of my heart, everyone! xo

Day 2 in the hospital with Lauren

We brought her to the doc earlier in the week with an awful cough and fever, and she was diagnosed with pneumonia. A couple days later, her breathing was suspicously more intense, so we brought her to the ER and she was admitted with RSV. Her pneumonia diagnosis was based on an x-ray which they thought showed pneumonia at an early stage. But she tested positive for RSV, and that explains her symptoms and reactions better.

So we're here at PCH. Lauren is on a bi-pap machine for breathing, 24x7. We take her off to eat, and to perform extensive chest percussions(CPT) followed by several rounds on the Cough Assist and then deep suction her nose and throat to get the gunk out.

She just had another chest xray, and it looks like a little more fluid is present in her left lung. They suspect that our last round of chest percussions was so effective that it rattled around all the gunk in her lungs and it's begun to settle. So after she naps, we're doing another super-intensive round of chest percussions in hopes that we'll get all that crud ready to come out with the Cough Assist and that she'll really kick this thing fast. That extra fluid in her lung is causing her breathing rate to increase and for her belly to retract (protract? I have no idea anymore) and it's worrisome. So they're fiddling some more with the pressure settings on her bipap and we hope she gets enough rest to make up for all the wakeful time she spent today.

She's a very sick little girl. Please keep her in your prayers.

Based on his own fever and congestion, we assume now that Kyle has RSV, too, not pneumonia like we originally guessed. But so far his breathing is okay and he's managing a little better. Chris is having trouble getting him to eat and drink at home, but that's probably because he's so tired and feels so icky.

We expect that Kyle will worsen and will be admitted to the same hospital over the weekend. You know what they say about twins being double trouble and all.....