I awake to some commotion and conversation in the hallway between Michael and my husband. I hear my husband explain to sweet Michael that he has to head out to work. Seconds later, I see sweet Michael scooped in Daddy's arms next to our bed, then Michael climbing into bed with me. Daddy kisses each of our foreheads and departs for work.
"Can I play a game on your phone?" he asks. Michael is the ultimate negotiator. He capitalizes on moments in his favor. I fumble around awkwardly with my phone on the nightstand in our dark bedroom and gently thrust it in his hand. I am too tired to argue, so the mini litigator just won his case. I hear him boot up "Fruit Ninja", where the primary goal is to slice and destroy as much flying fruit as possible. Mangled pineapple. Bleeding watermelon. Splattered kiwi and broken bananas. I hear the acrobatic swings of the Ninja sword as the fruit massacre ensues.
I pull the soft comfort of my covers up to the tip of my nose. My eyes are buried beneath my tired lids. The sounds of the fruit slaughter are dulled by the ominous cough I am hearing from Michael. A gravely, junky cough . Slice, whip, crack, and splosh! Then sounds of a watermelon cracking. Michael painfully clears his throat. He works to gain control, but can't quite seem to stop coughing. After a breath pause another wave of coughing overcomes him. He begins to get frustrated since his cough is affecting his ability to decimate brightly colored, oozing fruit.
I hear Dylan's wake up call from his doorway. "Mommy? Ma-meeee!" I hop out of bed and my mini fruit-hating ninja shadows me. After a wake up diaper change, pitstop at the potty, everyone is fresh and ready for morning CF treatments. We usually spend more time lazing around and starting everything around 7:30, but this morning we are revving up the machines an hour early because Michael's cough is very much present.
It's a cough that has been plaguing Michael and he can't quite shake. This is the cough that ebbs and flows. It's the one that has kept Michael at home from school for over a month. These are the moments that those squeaky wheels grinding in my brain slow and halt altogether. My mom brain shuts down. I just don't know what do with this cough, or rather the shift in his cough.
It's subtle, but my ears have gotten attuned to it. Airy and dry. Lately airy and dry. Sometimes infrequent, sometimes frequent, regardless always an annoyance for Michael. Other times is becomes spasmatic and completely uncontrollable. But it's the shift that catches my attention on this morning. No longer airy and dry, but now wet and junky. Clearly menacing. Rattling. All of this layered onto the original version. I guess you could call it now Cough Version 2.0. Also, layered in is constant throat clearing. Because it was the very first thing in my senses this morning and hasn't left us for a moment, it warrants a call to the CF Team.
It's a Friday morning and I have fallen prey too many times to doubting myself on a Friday and then realizing I should call someone on the care team when it's 4 pm and the staff is ready to head home for the day. I just hate to bother docs on the weekends if I don't need to... on this morning, I decide early that I need to reach out and get the ball rolling. I leave a message at 7:45 a.m. strategically. If it's nothing or they want me to hold off to monitor the cough through the weekend, they will just let me know. But, if they want to tweak any meds before the weekend, I will have the opportunity to hit the pharmacy or make adjustments throughout the day. Done. Decision made. Now to hear back...
Within the hour, I get a response from the team and assessing begins. Details detail details. I go through every detail of our recent days. I have learned what seems meaningless can often be the important to the doctors. The coughs highs. And the coughs lows. But I share with the nurse, the most important reason for my concern... he is now coughing in his sleep and first things when he wakes. Satisfied that I have covered everything, we agree that she will check in with me once she has conferred with the doctor.
I wait for the call amidst the scramble of finishing treatments and making breakfast. This morning on the boys' breakfast menu are gooey, fragrant cinnamon rolls and salty bacon that cracks and crumbles with each bite. The only thing I need is a good cup of coffee. Then the phone rings with the verdict... the doctor wants to see him... today. A little surprised, but also relieved, I hang up. I unmistakably see my day shift right before my eyes.
I immediately dial Nonna to ask if I leave my other monkey with her as I plan to take Michael to the doctor. The next phone call I must make, makes my heart sink... Michael's preschool teacher. I have been keeping Michael at home for over a month during his continued battle with this cough. He has fought this junk since November when he was hospitalized. As he recovered in November and December, we tried to establish normalcy with school and through the holidays. But it was at the January visit with his CF Care team that he had a recurrent cough and shocking weight loss. We were told to hibernate at home avoiding germs and viruses for a while. His overall picture of health had, very clearly, shifted.
His caring teacher had offered to visit him once a week at home to help him stay connected to his classmates and their activities. I feel gray even with the rays of sun pouring in the house, because now the doctor's appointment is trumping a fun visit from his thoughtful teacher. Not only is this troublesome cough preventing him from going to school with his friends, but it is now altering our Plan B for him to still have access to fun and learning with his teacher. I have to cancel for today and try to schedule with her next week. Just how do you explain this to a kid who doesn't really feel sick? I catch her briefly and we agree to talk on Monday to reschedule.
The next hour is a scramble to get dressed and get on our way. As I help Michael into his pants, Dylan grabs the potty seat, puts it on his head and runs out of the bathroom laughing. I lock eyes with Michael. He smirks and starts laughing. I just shake my head and snicker under my breath. As I finish helping Michael with his shirt, I see a flash of Dylan run by and then he slowly turns the corner around the staircase. He begins by hanging on the banister clutching the spindles and starts walking along the unsafe side of the staircase. Foot over foot and hand over hand. I dart out of the bathroom seeing this, fly around the banister and grab him. This child seeks out the most dangerous things possible and tries them. My heart in my throat, the acrobat in my arms, I am relieved. Then, I firmly reprimand him.
Some black eyeliner, a good pair of jeans and my favorite red trench coat cinched at the waist, and I am ready to roll. Nonna arrives and Michael and I head out.
Typical CF clinic routine... the paper face mask... the hurry up and then wait... the checking in process. This time we must wait a few minutes before they can usher us into an exam room. So, with no one else in the waiting room, Michael and I decide to hack open some fruit with our trusty digital ninja sword.
Once in the room, we are greeted by our favorite nurses, who immediately comment on how great Michael looks. It is evident that he has gained weight like a rockstar. I had noticed this week the little pudge that has formed under his chin. His face is fuller. He is heavier when I pick him up. It is when he stands on the scale when the collective gasp fills the small white room. He is 40 pounds! What?! 40 pounds? He can't be. But it's true. Here it is, before my eyes as the nurse slides the metal markers over on the clunking scale, there has been a shift. I am bursting with joy. I have to swallow my relief and emotions down, so as not to completely embarrass myself. He has rebounded from his weight concerns from seven weeks ago. My kid has porked out. And I love it. I fidget with the tie of my trench coat for a distraction.
We power through the remainder of the visit with the nurse and the doctor discussing the next steps with this pesky cough. Same drill... culture, antibiotic in the meantime, and lots of albuterol (you might recognize it from the puffer device that asthmatics use during an asthma attack). Nearly two hours later, we have our marching orders and head for the door.
We exit the pleasant medical campus through the dull lobby. We pass under the overhang where dark shadows live and step out into the unbroken rays of sunshine. I welcome the light as we climb into our familiar car. When I suggest we pick up food to bring home for lunch, Michael explains that he doesn't feel like eating. The irony of the 40 lb. kid has had his fill of eating. He then asks, "Can I go home and do my vest and mask?" I pause. I know my little negotiator is angling to watch his favorite TV show, since he knows that we let him watch his favorite show to reward him for doing his treatments.
Our day is thrown off. The food can wait, especially since he is not hungry. And how many times is he going to ASK to do his CF treatments?!
Of course, I agree. Michael has been such a good kid, who overachieves every day. I shift my thinking. He doesn't have negotiate to win his position this time. He's already won.
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