In recent days, Michael has had a touch of a cough that has quickly escalated into the worst cough we have ever heard out of him. Junky. Deep. Painful. This cough has evil lurking inside of it. It isn't the cough that is so menacing, but the struggle to recover from the coughing that is so alarming.
While everyone is with friends and family enjoying the Super Bowl, we too are with family doing the same. However, for my sweet little boy, Super "Bowl" had a whole different meaning. Michael has had no appetite lately. I am freaking out with every bite or lack thereof at a meal and knowing that there is a bigger picture of his health going on. I fear that his lungs are getting crudded up.
The ray of sunshine is that his throat culture from the last clinic visit showed 'normal' respiratory flora, in other words "nothing". For those not in on the CF lingo, a 'culture' is usually a swab at the back of the throat. Think of when you were a kid and had to go to the doctor for a strep test. Basically, the thinking is that if the throat is showing a dangerous bacteria where someone is exhaling and expelling the germ through the throat, then clearly it is hanging out in the lungs. It is certainly not fool proof. There are the hits and the misses where something is brewing in the lung. With the misses the little evil germ may be deep in the lower recesses of the lungs, and it's just not detected in the throat.
Cultures are a great way to take, almost preventative action against worrisome germs. While not truly preventative in the sense of the word, it is a way to aggressively keep up on top of what is going on in the body without invasive testing. When Michael was 2 years old, he asymptotically and incidentally cultured a nasty bug called Pseudomonas Aeruginosa (PA). PA is a lung destroyer. It is one of the culprits of considerable lung decline in CF patients. And babies and tots today are treated aggressively if PA is detected. PA's favorite home is a warm, dark, moist place where there is a break or vulnerability with a host. Basically, a CF lung is an ideal place for PA to grow. It is not the worst of germs, but it is certainly feared.
I once recall a social worker sharing with me that there are five grieving moments in a CF family's life.
Diagnosis of CF.
First hospitalization.
First diagnosis of PA.
Lung Transplant.
Death.
PA has that much impact on a CF family. Often the first hospitalization and the first diagnosis of PA are the same, since an individual might obviously be hospitalized because of a PA infection.
There are other germs that do dirty work. When Michael was hospitalized in November, it thankfully was not PA. But it was Staph. How crazy that I was thrilled that he ONLY HAD A STAPH INFECTION IN HIS LUNGS. It is shocking to other people that I am so casual and so nonchalant about a serious pulmonary infection. I am usually sad and struggling for grace in those moments. But truly I keep it together because I know there are considerably worse news that could come with a lung infection... So, I'll take Staph any day.
I ramble on about these germies because a culture can mean so much. Families wait for the culture news. They cringe when the phone rings three days after a clinic visit fearing word about a germ that has settled in. Cultures can give a good indication of what's in the CF lung. But all the while, they can be very deceiving since they are not all-telling. It's the easiest indicator of what is lurking in a CF lung, but it is certainly not the best one.
And strangely enough, families also almost wish for a positive culture when the little ones just don't seem to be feeling 100%. At least with a positive culture then they know what they need to treat. CF can be such a complex and confusing disease. Right when you have the answers or things are going well, you are slapped in the face by a million more questions.
Just three days ago I was telling a CF clinician that Michael's cough was improving. And we rested our heads that night knowing that his culture came back with "normal respiratory flora". Phew.
Normal.
And tonight, during Super Bowl XLV, Michael is hanging out on the couch when he begins coughing so hard he starts gagging. I see the fear flash in his eyes. I ask him frantically, "Mike, Mike, do you need to go to the bathroom?" He nods during his torture-some coughing fit, the skin around his eyes red. His eyes are strikingly blue against his bright, rosy pink cheeks.
I swoop him into my arms and rushed him into the bathroom. A few hard coughs and he throws up. I rub his back in circles, thinking "some Super Bowl". Poor Mike is bracing himself on the "toilet bowl" as he throws up and continues coughing. I keep rubbing his back.
His sweet, sad eyes look at me water welling in them. One tiny tear breaks on his left eye and travels half way down his cheek.
One lonely tear.
He looks down at the toilet waiting for more waves of sickness to come. The tear signifies his confusion at it all. This sweet tiny tear falls, nearly suspended in the air for a moment as I watch it, into the toilet. My heart falls with it. Right into the toilet.
The coughing worsens through his last CF treatments of the day and it is clear that we will need to call the doctors first thing in the morning. Dread rolls in. Fear and frustration what is coming on the horizon. There is something behind this intense, painful cough. And now we might need to go deeper with our questions and with our tests. I am hoping that the culture is right and this time did not miss something. But my instincts are telling me something altogether different.
We need a cure for these kids. And we need it fast.
Two days later we head to the doctor with Michael. We opt to leave monkey Dylan with family and trek to the hospital. "Pack a bag" our team suggested. Translation... Michael could very well be admitted for another hospital stay.
We do the standard round of tests upon arriving. Michael plays pleasantly on the high exam room table with the crackling, medical paper with every shift of his weight he makes. He pushes his Matchbox cars around and plays with his Transformers. My husband and I sit side by side on our smart phones, frankly both too nervous to exchange dialog.
When the doctor walks in, we share his latest troubles. He's not eating. He's flushed. He complains about joint pain. His shoulder. His elbow. His hip. His knee. He is coughing. Deep. Rocky. Painful and chesty. We answer all the questions and the next course of action is changing the breathing treatments and adding more medications. And we take another culture hoping that in the coming days we will have more direction on how to best treat Michael. I take a deep, controlled exhale. The ugly, bland hospital tile glares back at me angrily.
The doctor strategically helps me see the easiest way of administering the new medications without really adding too much on our plate. We talk about the overwhelming routine for both boys. She recognizes the stress on our family. The weight on my shoulders is apparent. And then she hits me with it...
No school for Michael. No parties, no restaurants, no grocery stores, no unnecessary trips out. No big group gatherings. We need to try to keep him virus free for a while. She is hoping that this can help him to recover. Instead of Mikey continuing to get knocked down while he is trying to get back up.
No school? How unfair! I feel like the four-year-old. While Michael would handle the news far better at a later time, I, on the other hand, am not handling this well at all. My reaction then earns me the pep talk. But that is the simple way of putting it. Our doctor, whom we trust completely, delivers her honest observations that I need some help. No, not the "coo-coo looney" trip or "get this girl a drink" type help. But regular help a few days a week.
She recognizes that we have all hands on deck with family and friends. Everyone is more than generous pitching in to help us get to a doctor's appointment or a much needed date night. We have been greatly blessed with a support system of love, scrappiness and help. A "make it work" crew. But what she is talking about is to have some regularity and routine.
We leave the hospital thankful to be going home. But are struck with the reality of our 'run and gun' days as my husband leaves the hospital heading for Midway Airport to leave for a business trip. I pack Michael into the car and head off to pick up Dylan.
No school for Michael is a bummer. I talk to the director of his preschool and we orchestrate a plan so he can still "exchange" Valentine's with his friends. Also, I share my thoughts on trying to 'replicate' the activities they are doing in school so he can experience similar things from home. I will make things as normal for my kids as possible. I want to fill the holes that this stupid disease creates in Michael and Dylan's lives.
I decide that it would be idyllic to give away heart shaped recycled crayons for Michael's Valentine's exchange for his classmates. Basically, you know all the broken bits of crayons that you end up trashing over time? Well, we melt them down into new crayons. And believe me, we have PLENTY of those broken crayons from Dylan's favorite past time of throwing crayons on the floor. All day long. I haven't quite understood what game he is playing, but he really likes dropping crayons on our hard tile floor. Not a good fate for a trusty standard crayon, but great for recycling crayons. We have done it before and it's pretty cool. However, things were just off this time. Michael and I spend time organizing the crayon bits into the different hearts to make spectacular color combinations. He is stoked for this project.
BUT ONE FATAL FLAW.
I put the silicone bake ware in the oven WITHOUT A TRADITIONAL BAKING SHEET UNDERNEATH. As I go to remove the floppy red silicone filled with hot wax, I juggle to keep the hot molten liquid from dripping or sloshing out. Even better yet, I have two awkward potholders that I am trying to manage. I brilliantly decide to try to slip a baking sheet under the stupid, unstable silicone. As I do, the crayon wax pours out toward me on the baking sheet. It wouldn't have been so bad, except that I freak out and then all the wax starts to pour into the floor of my oven. Romantic violet. Rustic terracotta. Bold magenta. All swirl together taunting me.
Then, the gray smoke starts. A steady stream of smoke starts to pour out of my oven. There is gray smoke everywhere.
Crap. Crap. Crap! CRAP!
I yell at Michael to get out of the kitchen and to get Dylan out too. I send them to Michael's room (in hindsight I should have sent them to the basement, HELLO!, smoke rises) and tell them to close the door. I start running around the house freaking out, and thankfully not swearing, while I frantically open windows. Again, this would be a fine idea except it's NEGATIVE 15 DEGREES out. I have no choice. I open 7 windows downstairs and 2 windows upstairs and have all fans going.
I am surprised when I run upstairs to find both kids up in Michael's room. Michael had been an amazing little kid towing his brother swiftly upstairs to his room and closing the door. In this moment I know, he is a survivor. He listens very well and he has instincts. Michael knew I was frantic but focused and dead serious when I told him to get his brother and him out of the kitchen. Completely amazing four-year-old. I head back down to continue the clean up. I continue wiping the smoking liquid wax out of my oven, totally baffled on what the ultimate clean up job is going to require.
When the plume of smoke has passed and the emotional flurry is over, I look around and see an indescribable haze throughout my house. Oh, I am totally going to win "Mom of the Year" award for this one. Show of hands. Who wants to nominate me?
Minutes later the rooms have cleared and the stale air is replaced by sweeter, cool air. Mmmm fresh air. We are able to close the windows and relax a bit. Michael is vigilant in his quest for safety and doesn't want to leave his room. I explain my concerns about the smoke sticking to the "glue in his lungs", but that the smoke is gone and he is safe. He later recounts the whole explanation back to me later before bed.
It is way past both kiddos' bed time, but Michael still has treatments left to do. As I grab his nebulizer parts and mask, I realize that these were not inside their protective container. Even though I had spent all the time earlier today sterilizing them, they were not covered during the crayon fiasco and were exposed to the smoke. Well, I can't really do Mikey's treatments so I run him on a vest for his airway clearance and figure we will get back on track tomorrow. I tiredly start rewashing the nebs, which I had done only hours previously, and a pot of boiling water. No rest for the weary.
As I am washing the tiny plastic pieces that I have so many times before, the dog stares her pathetic eyes at me. She grumbles. She stammers backward as if scolding me. The whirr of Michael's vest and the insane volume of the Transformers show in the other room drone out most noise, but I can still feel the dog's eyes burning through me. My chapped hands sting under the scalding hot water as I wash the medical equipment. I finish up the washing only to hook up the dog's leash and take her outside to do her business.
As I am standing in the frigid night, I look up to stretch my neck and for some visual relief. I love looking up at stars on cold winter nights. Then, I see it. I see the most perfect, unmistakable streak of light in the black sky. It's nearly above me as I stare up at the heavens. It travels from my left and runs to my right, but not until it makes a slight wave up, then slightly down. The magical omen disappears. It is so fast. I can't even explain how quick it crosses my cornea. But it is undeniably there.
I make my wish. And it's not for a clean oven. And it's not for some amazing gadget so the dog can let herself out. It's not even for a glimmer of sanity. It's for my two little troopers who have more bravery and resilience than anyone else I know. I open the door and feel the warm air hit me. My muscles relax. The whirr continues from Michael's vest.
Now, how the hell am I going to clean that oven?!
sorry about your crayon luck- but I needed that laugh. You describe the "CF culture process" so well to the "outsiders" that don't know a lot about CF. Thanks for sharing- Did I mentioned that I look forward to your postS?!
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