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)

Sunday, September 19, 2010

No Fury Like a Mama Scorned

The following is a copy of the email I sent to the corporate headquarters of CVS today, after being treated like a beggar at their counter for the LAST time.

My husband and I have been regular customers at the CVS at 3614 Camp Bowie Blvd in Ft Worth Tx for the last 6 months. Our newborn son was diagnosed with Cystic Fibrosis and requires several prescriptions each month. During our time with this pharmacy, not ONCE has a prescription been ready on time, in spite of my calling in refills a minimum of 24 hours in advance with a desired pick up time. There have been instances of incorrectly filled scripts, causing my son to run out of a medicine he desperately needs almost two weeks early, in which the employee demanded I must be mis-medicating my child because they were incapable of making an error. Today we were forced to make two separate trips to the pharmacy because the prescriptions I have been trying to fill for over a WEEK weren't ready, after they had called us to report that they were. Once all medications were finally acquired, we realized that the tech had neglected to give us a 1 ml dropper for the ranitidine syrup, again. When my husband asked her for one, she refused to give him any. She told him to go find them on aisle 9. CVS does not sell 1 ml droppers, which we informed her, and she again told him "aisle 9" After looking, in vain, on aisle 9, he tried to explain that the only one we had no longer had markings on it due to repeated use and we needed at least one to ensure proper dosage. She shoved a 5 ml dropper across the counter and walked away. I would like to challenge you to use a 5 ml dropper to dose and administer a .25 ml medication and do it accurately, delivering all of the medication.

Ultimately, I am beyond sick and tired of the foul attitudes and blank stares from the staff at this pharmacy. I believed that after a time of being regular customers, the staff would remember us, the medications we get, or at least that we are loyal customers. I stuck it out for six months through this kind of abhorrent customer service in hopes of establishing a long term relationship with the pharmacy and it's staff. When I finally called today to speak with the pharmacy manager about these ongoing instances of poor treatment, I was placed on "terminal hold". I am furious, livid, and disgusted that this is all the more your business cares about it's customers. All I am trying to do is accurately and efficiently fill the prescriptions I need to keep my son ALIVE AND HEALTHY. Perhaps you should review your hiring practices if your pharmacy staff doesn't share that vision.

Feel free to reach me at any time,

Amy Wynn

(followed by email address, phone number, and a link to this site)

Monday, September 6, 2010

Monumental Milestones

BirthdayThis coming Saturday will mark Six Months since I took Em to her riding lessons with contractions 4 minutes apart, drove myself to the hospital (the long way) with contractions 2 minutes apart, stopped to fix my makeup before checking in at L&D, and re-enacted the birth scene from Knocked Up.

Six Months since I was afraid of the green muck when my water broke, since the NICU staff attended the birth. Since my husband didn't get to cut the cord and we didn't get to hold Jackson until he was almost fifteen minutes old, and Six Months since I didn't mind because he didn't aspirate any meconium and he was ok. Six Months since Mike, my OB and I were all momentarily taken aback that the baby projected to weigh in at almost ten pounds checked in at 7 lb, 11oz. And six months since I marveled at the wide eyed gaze of a little tiny boy with huge hands and bowlegs. Six Months since so many tiny little landmark moments I'll never forget.

That means that 19 days after this coming Saturday will be another Six Month Milestone. Six Months since the phone call that separated the world that existed before that moment from everything that has happened since. Since we met our champions at Cook Children's Hospital, became intimately linked with the CFF. Six Months since ...Cystic Fibrosis became the vernacular.

Happy BirthdayIn coming to terms with Jackson's diagnosis, I've cycled and re-cycled through 'stages of grief' again and again. I've dealt with what I recognize as some irrational trains of thought. One particularly illogical coping mechanism has been the thought that if he made it to Six Months without and infection or hospitalization, he would be ok. That would mean his case wasn't terribly severe and life as we know it wouldn't end. I'm fully aware what a faulty ideation that is, and yet, it's lodged itself in the back of my head all this time. And here we are, on the cusp of passing that irrational benchmark, and waving it in with more questions. We've made it this far. Not only that but we've exceeded all medical expectations. My impatient nature is barking at the door of the Six Month Milestone, asking....what now???

I want to know what's going to happen. Truth be told we still don't know the severity of Jackson's case, the only thing that will tell is time, time, and more time. We know we've been beyond lucky so far. There is no way to know what the First Winter holds, and right now we're bluffing. Staring down cold and flu season with bluster and bravado, holding hands with the unknown, and simply moving forward.

What I do know is this: every time I think about how fortunate we have been and continue to be, I choke on my own tears. Every day of health, every time I realize how long it's been since I heard a coughing fit, every single normal developmental milestone my son passes like a bandit on the run sends sweet, hot little reminders dripping off the tip of my nose and splashing daintily onto the keyboard.

I can't pretend to bargain with the future, and I don't care to wallow- or revel- in the past. As usual, I end my post by swallowing up the present and being reminded that each passing moment is a lesson in both gratitude and patience. SockMonkey!

“One day at a time--this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering.” (Author Unknown)