One warm afternoon as the summer is winding down, I notice a weird mark on Michael's left shoulder. Almost like an oozing bite that doesn't immediately resolve. I consult the nurses in the Pediatrician's office. "Not infected, not lyme," the doctor tells me when I take him in. We go with the garden-variety "kid thing" or bug bite and life moves forward.
Then, about a week later an inflammed skinrash shows up on Michael's arms. Mostly only his forearms.
He is not my allergy kid, little brother Dylan is. I shrug my shoulders and decide to keep an eye on it. I give him Benadryl and don't really think much more of it... until the rash disappears and then reappears a few days later. It comes and goes and AGAIN (sigh) we land in the pediatrician's office. She is slightly baffled, but there isn't anything immediate to treat. She suggests a highly specialized dermatologist if his rash doesn't dissipate.
A few short days later as the rashes are as elusive as a mother's sanity, I begin to worry when he starts having high fevers. The fevers become predictable as an every other day occurence and usually spiking in the afternoon. Other than visiting the pediatrician and consulting the CF team for his slight cough that comes and goes, we go with Motrin and scratch our heads.
However, it is one afternoon late August, Michael spikes the highest fever he has ever had. At one point his fever gets as high as almost 104 degrees. It climbs within minutes, so fast the Motrin doesn't yet have time to kick in.
Then I see Michael's lips turn a haze of blue. I freak out. He is a kid with respiratory problems. AND BLUE LIPS!!!
I rush him back to pediatrician's office with his fever and no real answers. Maybe a mild cough, but it doesn't seem to connect to a "CF thing". You see there are "kid" things in our house and "CF" things... sometimes they are obvious, sometimes they are not.
Broken finger = kid thing
Toy stuck up the nose = duh, clearly kid thing (although those CF sinuses can be tricky)
Rash = kid thing
Belly aches = typically CF thing, unless horrid stomach virus then kid thing
Ear Ache = kid thing
Fever = both kid thing and possibly CF thing
Cough = kid thing
Continuing nasty cough = CF thing
Finally she decides no more fooling around... he needs to start an antibiotic. Clearly, veering into the CF thing, we must take action. When she cannot reach the CF doctor to consult while we are in her office, she prescribes an antibiotic of choice and we head home to see if that might help. Michael seems to respond to the antibiotic quickly. The next day I speak with the CF Care Center nurse, who I respect and couldn't do without, who advises that about a month previously, Michael had cultured Staph in his lungs. Well, there's the answer. At least we know what we were dealing with. And now the picture becomes clearer about the rashes, the fevers, and the cough.
To give you a peak under the tent of a CF family, we often test to see if the boys have any brewing bacterial infections (to read more about cultures, click here). And while a child might test positive for a germ, we don't always treat it, unless they become symptomatic (cough, cold, signs of infection). It's sort of like a pregnant mommy being tested for Strep B. It's a regular test and just because mommy has it, doesn't mean she's sick. But there are consquences for baby if left untreated. So, too, is the deal with CF patients... or any of us for that matter. Just because we show a germ, doesn't mean we are sick with a germ.
But now we know that there is a germ. And Michael is sick with it.
Thankfully, the strange rashy occurrences on his arms and the fevers do not show up after the course of antibiotics begin. But the cough, still hangs on. It's not an ominous cough, but it is tight and constricted sounding. I have heard it before and I don't like it. After some discussion, the doctors decide to extend his antibiotic for some extra coverage as school is starting soon and he just needs an extra boost to kick what's been going on. Right when I think it's behind us and we have moved on, I am mistaken.
The excitement of first grade sets in and he is off to the races. The prestine new schools supplies packed up and ready to go. New markers. New pencils. New glue. I take a deep inhale of the new supplies and reminisce about my childhood as I pack them all in his backpack for school. All these tools ready for Michael's wonderful creations that await ahead.
Michael immediately makes friends with his outgoing and warm personality in his first grade class. I begin the relationship with the school for caring for my son who has added medical needs. I am pleased that they are communicative and willing to work with us. I am surprised at the different process of creating Michael's 504 plan, but am open to it. Illinois just isn't New Jersey. Beyond the accents, the jug-handle highways, and the Shore, when it comes to getting the boys settled in school, I have to roll with the differences. I need to relax and know that it will all be okay.
It's not easy working to build the trust instantly that had taken a year to develop with the school and it's team in New Jersey. But with time I am happy that Michael is in good hands and I have some comfort. It takes some adjusting and maneuvering... there is no bus that comes right to our front door and getting out the door is a scramble. There is more juggling in terms of advising the school when Michael needs his enzyme pills when he eats and we need to find a groove. But there are few kinks and life moves forward.
By mid-September we are all happy with our routine and with an extra coffee boost in the morning, I am functional. The days are busy with school pick-ups and drop-offs, with religious ed classes, soccer practices, gymnastics, playdates, and more.
Almost in sync, as the activity picks up, so does Michael's cough. We find ourselves at our regular clinic visit with both boys at the end of September and though a routine check-up, we plan to piece together the mystery that Michael has been for us lately. They have us cut short another round of antibiotics and steroids to test accurately again to see if there was any infection. I am sitting with Dylan in the exam room, while Daddy is with Michael doing his PFT.
I am lost in thought as Dylan taps away at the iPad screen playing Angry Birds. Daddy and Michael walk in with a hop in their steps. My husband announces cheerily, "He did good. He got an 87."
Mental freeze.
WHAAAAAAT?!
I put on the breaks and ask for clarification. "Wait. 87???" My husband shrugs and tilts his head a bit. "Yes."
My brain freezes. A PFT is a "pulmonary function test" and it helps gauge a CF patient's lung function and related health. The patient blows into a machine with as much forced air for as long as possible. PFTs are an important part of CF care.
Michael has always been well above 100. Seriously, somewhere in the 110's or as high as 120. All things considered, 100 is considered 'average' for other boys his age, including ALL boys, even without CF. So above 100 means he is above average for all boys his age. I sort of live by many numbers for these two kids. This being a pretty important one.
I almost need to reaffix my jaw back on because it fell so hard I think it shatters on the medical exam room floor.
To give some perspective, I do the math and it means he has lost anywhere between 11-25% lung function in recent months. JUST. CAN'T. THINK.
Daddy tries to calm my already furiously moving brain. He is not convinced that any of these numbers are accurate since Michael is still pretty young. Maybe he is not skilled enough of the test. Or maybe he is still learning. Then he tries a firm and straight tactic by saying firmly, "You can't freak out. Get ahold of yourself." This is a pretty typical transaction in our lives. He is my strength. Cool. Collected. And forthright. I on the otherhand shift hard into trouble shooting "mom" mode and what this all means.
As the boys play happily on the iPad, I look at my husband and whisper, "He is going to be admitted. I know it."
I just shake my head. I know something is really wrong. He has been doing this test for two years with success and always over 100. I feel the ugly grip of this disease take hold. I slump in my seat waiting for our nurse practitioner and doctor.
Pretty quickly, the doctor and team decide that we should see how Michael's culture goes (to see if there are any obvious infections), but that most signs point to scheduling a bronchoscopy to see what state his lungs are in and make decisions about admitting him for IV antibiotics.
The next week becomes a flurry of my cleaning our house, doing laundry with the looming reality that Michael is very likely headed for a hospital stay. Call it, 5 days at least. We are all ready for battle as we drive Michael in to the Children's hospital downtown Chicago in the twilight morning. He is tired and hungry and poor kid has to fast for his bronchoscopy, but he is trooper. I pray that they get him in right away.
Within no time, I find myself anxiously awaiting news in the waiting area. Daddy arrives back with a coffee and bagel for me and the same for him. We are starving since we heldfast as a troop not to eat, since Michael couldn't eat. The coffee is less than stellar and the bagel is dry. Frankly, nothing would taste good, but I know that this might be a long road ahead. I force them down.
About forty minutes later, Michael's pulmonologist and a fellow doctor alongside, usher us into a consultation room. They share with us what they found... First, there was a "hardening plug that had formed in Michael's lower right lobe of his lungs." I cringe. "We helped him clear it, but it was so obstinant that it snapped back when we tried to suction it out."
They present us with a picture that is a slap in the face.
The glue.
I start crying as I clutch the picture of this whopper that had been clogging my little boy's lungs. I can now see the damn glue that I had always known was a possibility, but we always thought we were taking all the right steps to stop it.
This string of mucus passes straight through one of his airways and then branches off into 3 more airways. This junk was literally lodged in it's place with no where to go.
Stuck like glue.
Poor kid. I don't see how it is possible that he could've cleared it on his own. The doctors smile when they see me crying at the very visual reminder of what's going on deep inside the salty boys' lungs. I am struck at the doctors' weird reaction.
They continue smiling and say, "We know it's hard, but... WE GOT IT OUT!" They are overjoyed to know that they helped remove it for him.
Then, almost harder to handle, the lead pulmonologist then shows us a picture of the fluid they have rinsed from Michael's lungs. The clear container is murky and brown liquid. She shares it with us to prepare us for what might come next with the cultures and tests. I know with certainty, there must be an evil pathogen, or many for that matter, lurking in there. I find myself holding my breath. But this is the very best account of what is going on in his lungs and how we can help Michael treat it. The raw pictures and discussion leave me emotional and angry. Then, I feel a surge of action.
I exhale firmly and we start to discuss the plan for the coming few days and hospital stay for Michael. Terms like "intensive chest PT" and "preferred IV antibiotics" are discussed. Daddy and I get our game faces on.
Michael is a good kid for his time in the hospital. He is truly a trooper.
He is generally polite and happy with the nurses, the respiratory therapists and all the doctors that come in and out of his room. His blue eyes light up as he makes conversation and he makes them laugh. He does his respiratory therapies four times a day without a complaint.
There are the amazing friends and family who bring treats and toys. Anything to bring a smile to a kid's face in the hospital. Anything for our precious Michael.
He is excited to participate in Halloween Hospital Bingo. It's a welcomed distraction since he spends six days in the confined walls of his room. He is in "contact isolation" meaning he cannot walk freely throughout the hospital unless it's necessary. And certainly not without a mask to cover his precious little nose and expressive smile. Michael is the final winner in the entire children's hospital for bingo and gets to choose a Star Wars action figure. He is quite plainly thrilled.
There are also the tough moments as his mother. One night he reads his first book aloud to me under the hum of the florescent lights. I am sad to realize that it wasn't in the comfort of his bed, but in a children's hospital.
Or that the only thing in the world that he wants is to be on the field with his competitive soccer team, the Lions. All those little Lions on the soccer field Saturday morning wear purple armbands on their left arms where his PICC line is located for his IV meds in honor of this brave little boy. Purple is the color supporting the fight against Cystic Fibrosis. I cry because of all those parents and kids that are rallying around Michael. It crushes Michael that he is not playing, but their warmth and compassion make it a little easier.
At least he can go to the exercise facility for kids in isolation to keep his body strong and healthy.
There are the distractions...
The hospital "selfie".
And homework.
And sometimes the distractions are not enough for a mother.
It's tough to see your beautiful child go through all of this.
All because of this messy glue, my husband and I celebrate our 11th anniversary apart -- he with Dylan at home and me with Michael in the hospital. You never realize what life will hand you and I wouldn't have believed that 11 years ago, this would be the picture. But it all began with love and we continue this recent battle in the war on CF with love at the core.
Our time at Lurie Children's Hospital becomes a lengthy blur of take-out meals, blah coffee, little sleep and lots of conversations with doctors. Upon discharge, we are relieved to learn after the tests come back and by some MIRACLE there is no bacterial infection in his lungs! It is completely unreal and we are so incredibly thankful. There, however, is a pesky fungus that is showing up, but it's not uncommon for CF patients. We will treat it if he does not continue to improve. But the doctors believe that the biggest issue was that Michael's lungs were filled with crud and inflammation likely from all the infection he had been fighting since January. Simply, we were effectively treating the infections along the way, but his body's reaction was this buildup of mucus and inflammation (which is very typical for CF patients). Ten months of the battles had taken its toll. They reassure us that the course of IV's and his "clean out" during his hospital stay are critical pieces to getting him on course to get back to his best.
We are so happy to be stuck on the Ike in a sea of Chicago traffic... Our normal grumbling when it comes to traffic is replaced with smiles and happy talk. We are taking our little boy home! We let Michael attend a couple half days of school with his PICC line and his at-home IVs. We try and return some normalcy to him. In only a short couple days at home, he sees the CF doctors and blows another PFT. And this time he blows 103! So long 87!!!
A 103. YEP! A ONE-HUNDRED-AND-THREE!!!
Immediately the doctor decides to stop his IVs at ten days. We are all thankful and relieved. But it wouldn't be quite the end.
When the at-home nurse comes to pull his PICC line a couple days later, Michael is super stressed out and crying, but it goes just fine. She successfully removes the PICC line and he calms down. As part of the routine care, she takes his vitals and notices he has a low-grade fever. Eh, she and I chalk it up to him being worked up about the PICC line removal.
As the night grinds on, Michael has a fever that reaches above 100 and sets my fear in motion. I call the on-call doctor to learn that if his fever gets much higher in the next day, he will need to go back to the hospital to check blood cultures to make sure that he hasn't gotten an infection from his PICC line.
Crazy how medicine can work... You treat one bodily infection with an IV, only to get possibly another infection FROM the IV.
The next day, Motrin cannot control his temperature any longer and with a 103 fever we head straight to the children's hospital ER. It is this time that Michael has had it. He is overwhelmed. He is scared. He just doesn't feel well. And all that he had done to keep it together and be such a good boy for those days in the hospital was just gone. He was just plain done. And who could blame him.
He screams when they start an IV in his hand and when they remove his bandages and examine where his PICC line had been. All his frustration and fear finally comes to a precipice. After some long hours into the evening, and with Michael's fever under control, they send us home with another course of antibiotics until we know more. Michael is exhausted, but stable so he can rest at home tonight.
A quick trip through the drugstore's pharmacy drive-thru and I figure we'll be home in no time.
WRONG.
The drug they prescribed is considered a specialty antibiotic (i.e. they don't have it on hand at most pharmacies) and even if the pharmacy staff orders it now at 9:30 at night it won't come in to the pharmacy for pick up for another two days. The helpful tech suggests that he can send the script over to a Walgreens that is 20 minutes away and if I can get there before their 10 pm close, we should be all set.
"Done!" I hurry with my tired little guy in the car to the Walgreens. Michael perks up when we walk in asking for a million different types of candy and drinks. I indulge him and let him choose two things while I wait on the medication. I realize my neck is stiff and sore. I close my eyes standing at the counter while they mix the flavor syrup into the liquid medication so it is slightly more tolerable for Michael. I am simply grateful that we can sleep in our own beds tonight and not at the hospital. It is late when we leave and Michael and I collapse into bed.
Over the coming days, Michael recovers. Color returns to his cheeks. The PICC line scars begin to heal. When we review the final act with the doctors, we discuss the possibility that he had a reaction to the IV antibiotics he had been on (even though it was righ at the end of his of course). Down the road, I will have to log that drug in my mental filing system as one to reconsider when we are faced with this again. But for now I know that Michael is doing better and all signs point up.
I am proud that he really kept up with his school work and is able to return to school again without missing a beat. And Michael is just finally happy back to his old ways.
Seven weeks later, I find myself in the car with Michael on our way to a follow up CF care visit to see how Michael's long-term recovery has gone. I am anxious to see what his PFT shows this time. I am lost in thought as we drive along the Chicago artery when I hear Michael say softly from the backseat, "Mommy, some day there will be a pill that I can take and will make all the glue go away?" I nod and explain that there are researchers and scientists in the labs every day trying to make just that happen. I tell him that they are working hard and doing all they can. He looks out the window and replies, "Because that would be awesome."
* * * * *
It's Thanksgiving weekend and we are engulfed in the 80's holiday hit, Home Alone. I catch myself watching the final scene with the boys when the parents and family tumble in the front door and embrace Kevin. Before I know it, hot tears are streaming down my face.
Thanks a lot, John Hughes. You get me every time.
Michael stands directly in front of the TV fixated on the story that he will tell you is the Christmas movie about the kid that sets booby traps and gets the bad guys. He loves this movie -- from the adventure all the way to the gooey ending.
Little brother looks across the room processing the feel-good ending, and he locks in on my gaze. "Mommy, you'll never leave us, right?"
I laugh through my tears and tell him, "Nope. Never. You see, you're stuck with me. Like glue."
