Friday, September 24, 2010

Dodging Bullets

This morning I was marveling over the words "Well Baby Visit" and mentally celebrating having made it to another milestone of health. I scrambled around on little sleep to get Em off to school, Mike to an interview, and Make J's 8:30 appointment, none too thrilled with the chaos.

We made it to the Neighborhood Clinic (aka the only peds in town that take Medicaid) in plenty of time to be the first people in the waiting room. I believe I've explained before how I feel about the creepy crawly germy nature of the waiting room there. It's a veritable haven for snot-licking, dirty children whose parents apparently think little of discipline or hygiene. This morning in particular, a girl of maybe 20 came in with her two toddlers, (possibly twins) barefoot and coughing in all directions, and decided to sit only a few seats away from us. As the kids pestered and bickered, the mother (I use the term loosely!) grabs her little boy by the upper arm and picks him up in the air, dangling him above the lobby like an alley cat. "You do that agin' an' the police are gonna come take you away" The wily tot squirmed easily out of her grasp and was met with a gratuitous eye roll as he returned to his chair-business unabated.

I shifted my weight to ensure maximum security and coverage of the car seat carrier. Butt on the very edge of the seat, scoot car seat up so the handle is lodged between my knees, pull the sunshade up as far as it will go so as to completely shroud J from airborne imminent disaster. I no sooner perfected the Mother Hover than I heard IT. The unmistakable sound of a six year old girl heaving from the bottom of her toes and vomiting with the force of a pea-soup possessed Linda Blair. Along with the sound effects came the sick and sudden realization that something acrid and wet had landed on my arm. I was in the splash zone. It was like she was Gallagher and I was in the front row during the sledge-o-matic bit. Half of the clinic unceremoniously rearranged itself to gain distance as her father stood over her and simply watched as she emptied the contents of her gullet onto the waiting room floor. I hand-sanitized myself from shoulder to fingertip and waited to be rescued from Dante's 4th circle of hell (the waiting room).

An hour later I was ushered back for vital check, where I learned that J's erratic appetite had, in fact, resulted in a slight weight loss, and vowed to redouble my efforts to increase both the number and the quality of chubby little fat rolls on his legs. In the time I waited in the patient room, Mike finished his interview and arrived to accompany me for the rest of the appointment. the cough that spurred yesterday's administration of a 5 day course of Orapred (steroid) began to show itself while we waited, and dark pinkish purple circles asserted their presence beneath his smiling eyes. By the time the Dr made her appearance, he was in a totally different state than when we had arrived. His chest was contracting- or sucking in under the rib cage, with each breath, demonstrating that he was struggling to breathe. A check of his 02 sats (or Pulse ox, meaning the amount of oxygen present in his bloodstream) registered only 92%, which I'm told is a level enough to make a grown man dizzy and disoriented. The doc ordered an Albuterol and Atrovent treatment on the spot and hopped on the horn with our pulmonologist.

After the treatment, he registered at 94%, an improvement, but not near the 98-99% we wanted to see. We were told that the CF clinic was expecting us soon, and we should plan to be admitted to the hospital. We were instructed to go home and pack, get lunch, and head to Cooks. I choked a little. We had come in with a robust and stout little trooper who was just trying to kick a little bug out of the pulmonary plaza, and were leaving with a baby sick enough to need inpatient care??

I needed a moment to reconcile it all in my head. On the way home to pack, I reminded myself HOSPITALIZATION IS NOT A TERRIBLE THING. If he needs to be inpatient to receive care aggressive enough to fight infection and prevent scarring and permanent lung damage, then we will gladly do it. We KNOW hospital time is par for the course, and we've made it almost 7 months without serious complications. If you're new, that spells CF success. Time in "the hole" isn't something to live in terror of or cry about. But the turnaround was fast enough here to be jarring. I mentally rearranged, or erased, rather, any plans I had for the weekend, threw anything I anticipated needing in the immediate future in a bag, and we headed to Cooks.

Vital check at the clinic was much better, 02 sats came in at 99%. I exhaled. Dr D ordered a chest x ray, and within minutes we were reviewing the results. While it's clear J isn't at the top of his game today, Dr D said his chest films looked even better than the initial set we took at the time of his diagnosis. After carefully discussing our options, he decided that there wasn't much to be done at the hospital we couldn't do with a rigorous regimen of treatment at home . He didn't require IVs, so everything we need to do can be done from the newly appreciated comfort of our own home.

I know sooner or later we'll need a stay in the hospital, and I'm so glad we have such an awesome one to go to when that time comes. But tonight, I'm positively with gratitude that it's not today. I've never been quite so glad to have a crazy baby ramped up on steroids squirming out of my arms as I try to dose him up with half a dozen meds.

(the consensus about why Jackson's condition changed so rapidly is that he may have dislodged a mucous plug. Once it worked its way out, the respiratory distress waned and his 02 levels stabilized. We have seen him do this once before, but didn't happen to be hooked up to medical equipment to measure his levels at that very moment)


  1. Glad you dodged that bullet. Being "in the hole" isn't so bad, it is balancing other commitments outside that is difficult for me with work and coaching and my daughter!!

  2. i was checking out the #CysticFibrosis tag on Twitter because I'm hosting an Art Auction to benefit this cause.... And I'm so glad to have found this blog!
    One of my closest friends throughout high school, and close family friends to this day has CF, and she has just passed her twenty seventh birthday. I don't know if she sees every birthday as the gigantic milestone that I see, but I am so proud of her everyday. And the reason that she's lasted so long was her parents AMAZING ability to get up every day and stare this adversity in the face. CF parents are amazing parents, and I really wanted to reach out with a letter of encouragement for you at this time.
    You're doing a great service.

  3. whew! and gag on the barfage. wowsers.
    love that sweet baby!

  4. Great stuff... except for the barf splash. I'm always impressed with your git and stamina and the positive spin you encourage yourself to put on every situation. Good job, mama.