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. :)

How to be The Best Children’s Hospital Roommate Ever!

I recently had the pleasure of a hospital stay with a sick kiddo. Phoenix Children’s Hospital is finishing the construction of an enormous, amazing new facility which features private rooms—but until it opens next year, we’re stuck in their old building where we have to share a room with another patient.

And now that the kiddo is healthy again, I’ve realized that it wasn’t so much a ‘hospital stay’ as it was ‘research for a great blog post topic’. You think I was just sitting around worrying about my child’s health? Ppsshhaw, please. No, I was seething at the behavior of our roommates and writing notes to help all of you become The Best Children’s Hospital Roommate Ever! Here are the rules:

1. Let your child dirty his diaper and don’t bother changing it for a while. And when you do, let it sit on the floor for at least an hour. Even strangers 4 feet away from you and separated by a thin rainbow printed curtain understand what a pain it is to walk said dirty diaper ten feet into the bathroom.

2. Engage in “I love you. No, I love you. No--I love you!” talk with your child in the middle of the night in a non-whisper voice. And you know what? Don’t feel bad about it at all. Again—your roommates understand the need for round-the-clock shmoopy talk with your kid and they are probably happy to give up their precious few minutes of sleep while they enjoy it.

3. Allow your friends and family to call the hospital room phone at midnight. Definitely talk about a missing receipt and going to church—its your prerogative, after all. It’s not like any sick children and their families are trying to sleep or anything and THESE ARE IMPORTANT TOPICS TO COVER WITH YOUR LOVED ONES. AT MIDNIGHT.

4. Let your kid scream at you belligerently during all his waking hours while he beats his mylar balloon to and fro around the room at a decibel level that pains anyone else in the room who might have sensitive ears (due to ear infection—this IS a hospital, after all). It’s his world—we’re just living in it. We know this and we love you for it.

5. Moms--let your husband meander around the place in his wife beater shirt, which nicely shows off the naked girl tattoos he sports from shoulder to elbow. On both arms.

6. Watch a lot of Telemundo. Loudly. Todo el día. Cada día.

7. Permit your child to wet-sneeze all over the place without covering his mouth and nose. Tip: This rule is particularly effective when your child’s roommate is at high risk for respiratory complications. We looove airborne contagions—and not just so that we can spend more mornings enjoying free coffee from the Kohl’s coffee cart!

That’s it. That’s all I got. My kid had pneumonia and we were miserable there in the hospital for a few days and life sucked. Other than the kiddo recuperating much faster than normal, the best part of the stay was the ambulance ride over.

I adore our hospital and the staff is world class, but a sick kid blows big hairy goat balls and no amount of amenities or sense of humor can make that better. No—actually, that’s a lie. Amenities and humor can totally make it better. Which is why I am already in love with the new Phoenix Children’s Hospital (which has yet to open) and why you love me.

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

He's a rock star

Wow, what a stressful day. Don't get me wrong, I get that way more stressful days hit a lot of families, especially SMA families. But today was Kyle's surgery and our first experience with general anesthesia and I was pretty wound up.

It started last night, when his anesthesiologist called to get some background on Kyle, on his current status (healthy, no complaints other than knee contractures), and on SMA. Then, I woke up at 4am today to get us off to Phoenix Children's Hospital at o'dark thirty.

Surgery was scheduled for 7:30am, and the doctors were running early for once. Kyle was pretty thrilled with a rocking horse in the waiting area (I had to prop him on the horse the whole time, of course), but he was less than thrilled when I handed him off to the anesthesiologist outside his OR room.

Seriously. How do parents do that, leave their kids and walk right out of the OR? And let me tell you--I am TOUGH. I have zero trouble stern-talking my kids into blood draws and vaccinations and timeouts. You will be still for x-rays. You will stop spitting. You will sit properly at the dinner table. You will not pick your nose in public. I have no mercy. I'm all kinds of "rules with an iron fist". But sweet Jesus the kid was screaming, "no no NO momma momma MOMMA MOMMA!" and was slumped up against the shoulder of the anesthesiologist (you SMA parents know what I'm talking about when it comes to a stranger handling your type 2 baby) and the tears were a'flowing. I marched out of there seven different levels of brave. Sort of. Unless you looked too closely and then you could see my distraught.

Anyway.

Worst case scenarios would have involved terrific trouble inserting his IV. Requiring use of a ventilator once anesthetized. Even potentially a lung collapse after extubation. Also a 1-2 day hospital stay for observation.

Best case scenario involved no ventilation, no respiratory concerns, short operation.

We got the best case scenario. Surgery was at 7:30am, and he was cleared for discharge by 10:30am. We barely got to spend any time with Jaci and Mike Felix, whose daughter Alexa is going on week 5 in the PICU for severe respiratory illnesses, and I actually was sorry that I didn't get to hang out with them more. They've been stuck in the hospital for over a month, and we consider them good friends and I looked forward to hanging out with them in the parents' lounge. (There IS a parents' lounge, right? Complete with free wi-fi and unlimited bottles of Jack Daniels and chianti? You look confused--is this assumption wrong?)

I got him home, he had a little nibble of food, took a bit of a nap, watched Blue's Clues, ate some cupcakes for dinner (hi, I'm Mother of the Year), and then went to bed early.

I'm going to try to block out the part where this afternoon I dosed him with his Tylenol 3 and he experienced an allergic reaction and I sat there with Lauren's Epi Pen Junior in my hand wondering when it was "shit or get off the pot" time when it came to deciding he was okay enough or just plunging it, and then he stopped with the choking and coughing and seemed okay-ish and I called the doctor and so hey we're going to list "codeine" as a drug he's allergic to from now on.

In any case, he's doing fine tonight. Sleeping (mostly) soundly. At home. No more hives or purple swelling. Lots of Motrin. A decent amount of stitches in places you don't want to know about. Good times.

My hat is off to you more experienced parents, when it comes to surgery and stitches on sensitive man-parts. As it turns out, handing my baby off to a relative stranger while said baby goes into hysterics is my kryptonite....

The only photo I took the entire day, in recovery:


p.s. GO PHOENIX COYOTES. AROOOOOO! First playoff game is Wednesday night, 7pm. I won't be there, unfortunately. Blarg.

Kyle's Boy-Parts Surgery

Kyle and his poor undescended testicles will undergo surgery at PCH tomorrow morning. The procedure is simple and shouldn't take long. For most any other boy it would be an out-patient procedure. But because general anesthesia is involved, and his respiratory functions are so weak, dramatic precautions are being taken during and post-op which involve his staying overnight in the PICU for continuous observation. The hospital has wi-fi, so you can look for my updates on both Twitter and Facebook, if you're interested.

Coincidentally, our friend Alexa Felix is going on her second month in the same PICU. She's been a very sick little girl these days, the poor thing. I wish she was home and healthy, but it will be good to catch up with her family while I'm there.

Why don't my babies like oxygen?

All this time you know, I've sneaking oxygen to them pretty much everyday. Sometimes I call it "fresh air", other times I refer to it as "polluted air". But they've been none the wiser their whole lives.

But oxygen through a mask? They think it's the devil. It's almost not even worth it to make them breathe it. Except that their O2 sat monitors are super loud and obnoxious, so it's in my ears' best interest to make sure they get it.

Hositals (and sick babies) are miserable.