2.07.2006

IT'S A LONG ONE, BUT YOU MAY HAVE BEEN WAITING

Some of the collections that have inadvertently popped up in Zoe's room are downright fun. Shelves lined with plush stuffed bunnies and dozens of books, for example. Another collection that's started in a small bin above her changing table isn't so fun: Hospital wristbands. We have the ones from her birth, another from a visit after a bout with vomitting and diarrhea, another after breathing problems caused by her first run-in with pneumonia, and now her latest set... from U-M's Mott Children's Hospital.

It was a crazy weekend around here. And it was experienced drastically differently by Sonja and myself. So differently, in fact, that I thought it was necessary to tell the tale in two voices:

RICH: I left home at 7 p.m. Saturday evening, destination Rochester, Minn., to visit my friend Jerome at The Gift of Life House next to the Mayo Clinic. Earlier that morning, a visit to our pediatrician seemed to indicate (in my mind, at least) that Zoe was recovering well from what was diagnosed as another round of pneumonia. So I headed to Minnesota to see Jerome, my lifelong friend, who had days earlier donated a kidney to his mother. After driving through most of the night, inadvertently going nearly two hours out of my way on the wrong highway and three different unsuccessful stints trying to sleep at highway rest areas, I was an hour from Rochester when I got a disturbing call from Sonja.

SONJA: My friend Dani arrived at 6 p.m. Saturday to spend the night. Since her husband was also out of town, we figured it was a rare chance for some girl time. We ordered food and rented movies. Unfortunately girl time was postponed by a rough night (and well into early morning) with Zoe. Party over. By morning, she was back to being lethargic and launched into a coughing fit (along with the accompanying phlegm-filled vomitting). After a previously-prescribed breathing treatment didn't help, Dani (who happens to be three months pregnant) convinced me that our pediatrician is paid well enough to be bothered with an early Sunday morning phone call. He agreed a visit to the emergency room was in order, called ahead for us and we headed for Mott. At about 11 a.m., the hospital staff told us Zoe should be admitted. That's when I called Rich.

RICH: Because I was so close to Rochester, I proceeded to the Gift of Life House and visited with Jerome for about an hour (the original plan was to watch the Super Bowl with him, but I instead listened to it on the radio on my return home). For those keeping score at home, that means I was basically sitting in the front seat of my truck from 7 p.m. Saturday until I arrived at Mott at approximately 12:45 a.m. Monday morning. But don't feel sorry for me... that was probably easier than where Sonja was sitting.

SONJA: A recent switch in medical insurance meant we switched to the University of Michigan system. While we certainly feel fortunate to live in a community near such fine medical options (Mott Children's Hospital is rated one of the top 10 children's hospitals in the world), it can also be a bit frustrating. Let's just say that our generation's best doctors aren't being taught a whole lot of bedside manner. And it never helps that no matter how sick Zoe is, she can always muster a smile for every doctor and nurse that walks in the room. If we had a dollar for every time we heard "babies don't act like that when they're sick," we'd have a nice start on that college fund. Basically, we're often left feeling like we have to lobby to get practitioners to believe she is sick. And even we're struck by how odd phrases like "she's not smiling as often as she usually does," or "her color isn't as nice as it usually is," can sound. Then came a most unpleasant x-ray that left me asking why, with modern technology, they can't come up with a better process. They strapped Zoe into an electric chair-looking contraption, legs dangling, bottom balanced on a peg, and strapped in with velcro straps around each arm, her head, her torso and a plastic strap pulling up her chin. With a look of terror and tears streaming down her face (and mine), they got the x-rays that confirmed she had fluid in her lungs. The doctor described it as "fluffy." Later, with Zoe re-hooked to a pulse-ox machine (measuring the amount of oxygen in her bloodstream), nurses still wouldn't believe the low reading was correct because -- once again -- "babies don't act like that" when they're having trouble breathing. Finally, Dani piped up with (and I thank her for this paraphrased question): "Why is it that when the reading is low, the machine isn't working but when it says what you want it to say, it's working fine?" Posed with that question, the attending doctor asked us to keep Zoe still and he'd monitor her. While she slept and I nursed her, the pulse-ox reading fell to 85 (below 92 is too low). Finally, they were convinced.

Friends and family kicked in from there. In Michigan, Busia headed for U-M to take over Dani's role as Sonja's support system. (Sonja can't thank either enough for their much-needed help.) Honey desparately wanted to be there, too, but thanks to an earlier visit with Zoe she was experiencing her own respiratory issues.... and the doctors suggested she keep her distance. As Rich high-tailed it back home, he was kept awake by a steady stream of phone calls from Dziadzia and Uncle Norman, intended to serve mainly as one of those alarms truckers wear that beep when your head slumps.

The night was spent with Zoe receiving oxygen and being awoken frequently by nurses and doctors coming in to listen to her chest. Finally, early Monday morning, after Sonja and Rich each curled up on a tremendously uncomfortable (and half-sized) couch for short stretches of sleep -- and after Busia pulled an amazing (and greatly appreciated) all-nighter on an even-more-uncomfortable rocking chair -- nurses and doctors started showing up again.

This is a good time to get this thought out of the way. Walking down the U-M hospital hallway, you're struck with the magnitude of their work. One bulletin board included thumb tacks scattered across a map of the world, showing where patients had travelled from for their expert care. We heard tales of a 15-year-old girl a couple rooms down who was recovering from a heart transplant. I don't know what the tiny infant in the room next to Zoe was suffering from, but judging from the constant care and somber family vigil... it was serious. So maybe our dilemma paled in comparison. But when Zoe launched into a coughing fit so severe and constant that it caused Busia to yell into the hallway for help, you'd think we'd get a more compassionate response. OK... that point is made. I guess faced with the alternative of having to visit some inadequately staffed facility, we'll take the poor bedside manner.

The procedure that eventually helped things along was the suctioning of phlegm from her chest. Again, thanks to Busia for being there because faced with the prospect of sitting through the process (which is as barbaric as it sounds... think ShopVac), Sonja high-tailed it into the hallway and Rich pretended to remain sleeping on the awkwardly-sized couch.

After more observation and a chat with the head of pediatrics at the hospital, we were home by 1 p.m. Monday. Zoe is still recovering from the flu-like symptoms that plaqued her previously but is considerably less congested and not working so hard to breathe. That translates to much better sleeping and eating, which was becoming a problem. The hospital diagnosis was bronchiolitis likely caused by RSV, basically a viral version of pneumonia... one not helped by the antibiotics our pediatrician prescribed when he assumed it was pneumonia.

We're moving forward with some tests U-M doctors called strictly precautionary, but are still a little intimidating by their nature. Our pediatrician doesn't agree with the theory she has any existing condition causing her frequent respiratory problems... rather just the typical string of bad luck any daycare child has in his/her first year exposed to so much bacteria and viruses. (Something he ultimately says will be a positive because it will help her build immunity as she gets older). He still agreed to grant us the recommendations necessary for insurance to cover a visit to a specialist, if only to ease our minds of the worst-case scenarios we're now carrying around thanks to those U-M doctors' comments.

Now it's 10:44 p.m. Tuesday night, Zoe is sleeping soundly and we're about to do something we haven't had the chance to do in nearly a week... cuddle on the couch and chill out in front of some bad TV. We'll likely be asleep by 11, so don't call!

Much love.

4 comments:

Heidi said...

This has to be so tough ... I just lost it reading this post. We had to deal with a few jerks when Sam was in the NICU, and it was a total exercise in patience and self control. Seems like people working around BABIES in the HOSPITAL would be the very picture of kindness and empathy. It's infuriating. You guys are doing everything right and I am sure that these rough patches will be history soon. Hang in there! And best wishes to JEROME! Holy Smokes! What a wonderful thing.

Anonymous said...

As a parent who has been thru it, the RSV, I know how terrible it is to see your little baby up there being poked at...not a good feeling forsure. You will come thru this and it will all be water under the bridge soon enough! I love all of you! Sure wish I could of been there with you!! Auntie Shawnie

Anonymous said...

I WAS HAPPY TO BE PART OF THE DRAMA EVEN THOUGH MOST OF THE PHONE CALLS LASTED ONLY SECONDS....I KNOW IT KEPT ME AWAKE. HOPE ZOE AND FAMILY ARE GETTING SOME MUCH NEEDED REST.

Anonymous said...

Glad to hear she's doing better. Absolutely know what you're going/gone thru. We'll keep good thoughts in Round Lake Beach! And it's always those docs in the middle of the night that are jerky, ain't it?? Anyways...give a shout if you want...we've gotten good at this.

Chitown Dan's Boy