Tuesday, May 23, 2017

"Oh Shit," or, A Story of How We Wound up Admitted to the Hospital, Part 1

     This morning I am curled up in a green plastic chair with free coffee that is more accurately hot caffeinated sugarmilk. I wasn’t AT ALL embarrassed as I traipsed down the nubby hall carpet with little white rectangles full of sugar slipping from my free hand as I carefully balanced a very full cup of black liquid with every intent of turning it into the sweet cesspool of artificial and refined ingredients that sits before me. 

      Yesterday at this time, I was deeply engaged in the Monday Struggle of dragging two butts out of two beds to do too many things for one 24 hour day.  Kicking off the festivities were back-to-back specialist appointments in Pulmonology, one for sleep disorders, on ea regular CF checkup.  With much effort (and lazily calling across the hallway) my spawn crawled into my bed for the traditional morning cuddles, and he told me his cough felt yucky this morning.  Like everyone else within the Northern Hemisphere, Jackson has struggled bit with allergies this year. Last month, he had to do a three week round of antibiotics for the first time in a long time, and got sick enough that we had to stay home and miss my little brother’s wedding.  The antibiotics- whose job it is to keep the bacteria living in J’s lungs at bay when his immune system gets compromised in any way- seemed to do their job. I was impressed at how he recovered, given how quickly he had gotten sick.  And so we went about life, handling all of the other things it piled on our plates, generous helpings of love and mundane stress, days of ‘am I doing this right?’, homework from first grade and college, dinner and dishes, soccer and yoga, all of the daily ins and outs that help buffer us from the reality of how quickly things can change. 

     On Friday, the cough showed back up.  We increased the treatments that help to clear J’s lungs of the especially viscous mucous that is the hallmark of Cystic Fibrosis and a breeding ground for bacteria that causes the infections that scar the lungs and cause the damage that could ruin the house that Jack built. (Still with me?) We took it easy over the weekend.  J was a little whiny, and now I’m dealing with the useless but inevitable mom-guilt of setting a firm boundary when he said he was too tired to walk and refusing to carry him, leaving him tearfully clung to the trunk of a tree until the more sympathetic couple behind me let him hitch a ride in their wagon. I still didn’t think much of it.  He’d had a big weekend and that takes a little more out of him than the average kid. So when he crawled in to bed for morning snuggles and his cough sounded a little wetter and a little worse, I decided we wouldn’t be going to school after his doctors appointments.

     Like any other quarterly appointment, we wandered through (what J bubbles with laughter every time I call it,) ‘the eejit parade’- the slow rolling line of less frequent-flyers who don’t quite know how to navigate a parking structure. We hustled across the street to the specialty clinics, making a game of our near-lateness, and in through the wide, automatic double doors of the building. Just as we crossed the threshold, a coughing spasm gripped him that was more powerful than I had seen him have before.  He would have dropped had I not held him up. It passed as quickly as it started and we continued up the elevator to his appointments.

     Part of Jackson’s regular CF checkups are lung function tests called PFT’s (Pulmonary Function Test- pretty self explanatory, no?) He just started doing them in the last year, and so he sometimes struggles to get them just right as far as accurately measuring his lung capacity.  I definitely raised an eyebrow when they came back and said  he had tested a whopping 30% below baseline. When was his last treatment? An hour and a half ago… far too soon for him to show such a drop. So they gave him another round of albuterol (a medicine he breathes in that dilates his airways and helps him breathe better) and tested again. No better.  While he was out repeating the test, I spoke with his doctor about  the possibility of his being admitted for inpatient care. 

     It has been a magnificent three and a half plus years since Jackson needed IV treatment.  Sinus surgery, and then the recent addition of Orkambi have upped his health game considerably. But Jackson is a CF kid, and CF kids need a tune-up *about two weeks of IV antibiotics, and usually steroids) every now and again to keep the bacteria that live in their lungs from taking over when they’re under the weather.  His doctor said we could try another round of antibiotics and steroids, but that we would likely be looking at a hospitalization in the coming weeks with a drop in lung function that drastic.  I quickly weighed the facts.   In two weeks, J is set to take off on an amazing summer adventure a couple thousand miles from home for the duration of his summer,  and the thought of him becoming that sick, that far from me, or of missing out on all of the things he had planned, or even of simply enduring scarring or damage because we weren’t aggressive enough in his treatment, was all the answer I needed.  He would be admitted as soon as I could grab a few things and get back up to the hospital. Remind me next time, to not to forget shoes and clean underwear. 

     My heart simultaneously sank and raced.  He has been so healthy for so long, and never, ever have we been blindsided by a change in his health like this.  There’s always more of a sign, changes in behavior or energy- and I think, looking back, I could have and should have recognized those things as well.  To have a little monkey who is one moment vibrant and wild and the next being hospitalized, it’s not something you can get used to.  I fought back tears and decided to instead handle business as we hurried back to the car.  As J climbed into his seat another coughing spasm sent him into fits, and vomiting all over the parking garage.  Sorry, whoever had to clean that up.    Back at home, I parked him in front of the TV, something we never do anymore, and scrambled to throw a few things into a suitcase- mostly laptop, phone chargers, human sized fluffy towel to wrap him in during sponge baths, and socks and underwear for J.  I didn’t have any laundry clean, I had food out to make for diner last night.  No part of me left the house yesterday expecting to learn that my son had lost 1/3 of his ability to breathe.

      To spare you the dramatic ramblings of an emotional mother, IT SUCKED.  I was scared and shocked, as was his dad and the rest of our family, some of whom had seen him less than 24 hours ago.  But in the end, this IS the best course of action. This is the most aggressive way to attack what is attacking him.  This is how to make my baby better.  I am pushing to be able to complete his IV treatment at home, a first for us, but his doctor conceded that kids who finish treatment outside the hospital tend to have better outcomes (less muscle atrophy and exposure to hospital borne illnesses.)  But, even to accomplish that, we will have to see a big leap in that lung function, and it will be at least a week before we can get sprung.  It occurs to me now, that while we are solely focused on making as much progress as we can, as we should be, I am afraid of what happens if he doesn’t get that 30% back. Nope.  We cross that bridge when we come to it.   Reality is heavy.  We have had such a blissful reprieve from it while we all rebuilt ourselves and our lives and we have been so, so lucky to be focused elsewhere for so long.  We are so, so lucky to have every single resource we do, doctors, nurses, hospitals, therapists, friends, family, donors and benefactors, bystanders, visitors and cheerleaders.  We are just so, so lucky to be here.  All of us.