 Good News Emlen’s new Gastroenterologist may not have been impressed with Emlen’s liver, however, I was impressed with her. She had peacocks embroidered on her black shorty cowboy boots. Each ankle sported a blue, purple and teal bird with a feathery-ish tail that fanned all over the vamps. Is that the right word? Just a minute. According to the Safari’s online dictionary, a vamp is “the upper front part of a boot or a shoe” or it has something to do with music. So… Dr. Fawaz’s vamps were pretty fancy with those peacocks peacocking. They coordinated nicely with her teal devore velvet tunic and black leather leggings. “Simply Smashing” is what came to mind. The night before we had watched several episodes of Amazon’s The Grand Tour. British phrases were front and center. While I was studying her outfit, Dr. Fawaz was studying all of Emlen’s gastrointestinal history and most recent tests: including the liver Fibro-Scan and pooped filled x-rays. “Everything is as it should be.” she declared. Meaning that Emlen has some cystic fibrosis (CF) related liver damage, but it is well within the expectations of the disease. “All we need to do is keep tabs on it.” she said in a very matter of fact manner. “We should set up a bunch of appointments for summer so Emlen does not miss more school than necessary.” While she was explaining how to arrange various appointments for one day I was wondering what she would be wearing. I know I should have focused more. This morning I tried to set up the ultra sound and doctor visit for July 3rd. It was complicated with the six hours fast required for the ultra sound. I could not get them on the same day. Emlen was not much better. He was playing Pokémon Go on my phone and groaning about the summer appointments. He would rather miss school. Bad News A few days ago, Emlen and I dragged ourselves into Boston to see his pulmonologist, Dr. Sheils, at Children’s Hospital. It was four-degrees at 9AM, too cold. Leaving the house was difficult. Everything was icy. The car’s heat finally kicked in when we were halfway en route. Fortunately, there was no traffic and we arrived 40 minutes early. The clinic is pretty flexible. If you are early they usually find a room for you. With CF there is no hanging out in waiting rooms due to the high possibility of infection. We have that going for us – straight into outpatient x-rays and blood draws. No lines. And the clinic is warm – super warm. It felt like 80 degrees. It has to be for all the sweat tests performed each day to diagnose CF. Perfect for a four-degree day. I was still shivering from the ride in. I kept my coat on and sat on the radiator while the nurses fussed over Emlen. After about a half an hour I piled my gloves, scarf, coat and sweater on the extra chair and dealt with all the poking and prodding. It was a grueling day of Pulmonary Function Tests (PFTs), a lung x-ray, height and weight measurements, throat cultures, and blood work. We did manage to squeeze in a lunch at the Longwood Café. Emlen had his usual order of chicken fingers and fries. He is a good eater at this particular restaurant. He loves the French fries. He is also getting better about trying new foods. I think he finally realized that he is not going to die from food he does not like. He might have to scrape the taste off his tongue, but that would be the worst of it. After trying the restaurant’s honey dipping sauce, he said he like my version better. That rarely happens as Emlen is a hugely picky eater and has always preferred chemicalicious* foods over his father’s and my home-made goods. Victory for Mom and Dad this week! We have high hopes that this trend continues. It won’t, but we can dream. The results of the tests are troublesome. Emlen’s PFTs are down again. His lung x-ray is about the same, maybe a little worse than the one in October. While he did manage to put on 2 lbs. and grow a centimeter, he dropped a growth curve. This sends up so many red flags. I also just learned from the clinic that the throat culture test results indicate that something is still thriving in his lungs. Shit. I need to be in Battle Mode… Makes sense that I keep scoring low points on the CF Care Giver Mental Health Assessments. Who wouldn’t with all of that. Good News, Again Many plans moving forward. Dr. Sheils is determined to keep Emlen out of the hospital this winter. Partly to avoid infection risk and partly because Emlen wants to finish the swim team season. Hopefully all the hoops we will jump through over the next two months work. There is a lot to do. I am writing this while sitting on the pool deck during swim team practice. I can hear him coughing through the relentless echoic din of splashing, kicking, hip-hop music and coach chatter. Emlen did confess that it is much harder to keep up in his lane than it was a few months ago. Now, we have a prescription for a new antibiotic, Levofloxacin, a ten-day course. It should help take down the staphapseudococcalgillustreptaspernomous** or whatever it is that is brewing deep in his lungs. Then back to the antibiotic Bactrim for the duration of the winter if his cough is not completely gone. On top of that, lots of albuterol, hypertonic saline and pulmozyme nebulizers followed by his vest three times a day. I must constantly encourage Emlen to cough. People look at me oddly when I tell Emlen to cough and to “get it out.” Recently one of the swim coaches was horrified when she overheard Emlen explain to me that he did not need a sinus rinse that night because he left all his snot in the pool. I politely smiled and told her I would ask the aquatics director to increase the filter settings to high when Emlen swam. The height and weight issue is a bigger problem. I can’t make him eat. The reality may not be a calorie in vs calorie out issue but a malabsorption one, with very few of the calories and nutrients actually getting into his system. Regardless, we need to get on top of it. A very the enthusiastic nurse/nutritionist sent us home with a huge shopping bag of protein shakes. I had put the weight gain Scandishakes aside for a few years because Emlen had grown tired of them and his favorite flavor, chocolate, had been taken off the market. Our cabinets our now filled with a new brand of chocolate shake and with the original strawberry, vanilla and banana cream flavors. Banana Cream is the one Emlen is most curious about. I think it will be a flop, but Emlen insists it will be his favorite. Although, he still refuses to try it. That only reinforces my flop theory. We have to add as many calories as we can to his meals. We were already doing this by topping off his whole milk with heavy cream and sneaking pats of butter into everything else. When Emlen is not looking we even add butter to his already heavy cream laden hot cocoa. I call it “Bulletproof Hot Cocoa.” It is modeled after the bulletproof coffee that all those cross fitters drink. It is pretty awesome - a layer of golden fat floating on top of creamy liquid chocolate. Now we have to up the ante even more. All vegetables need to be covered with butter. Any chip type snack needs to be dunked into various sour cream based dips. Cheese will surround him. We should deep fry everything. Cakes, cookies, and ice cream are perfectly acceptable for meals. Dessert is a requirement. A trip to McDonald’s for a Mighty Kids Meal will become a regular event. And I am supposed to generously sprinkle M+M’s around to make everything more appealing. Sigh. I had worked so hard to get the chemicalicious food out of the house. Two years of retraining taste buds, gone. Tonight, Emlen has rejected the family dinner of meatloaf and mashed cauliflower. Instead he is getting high protein Kodiak pancakes with butter and maple syrup. I have yet to get to the store for the M+Ms. Seventy-two percent chocolate squares will have to suffice. The biggest issue is lunch. Emlen HAS to start eating it while at school. Historically he spends the twenty minutes designated to the meal chatting and maneuvering about the cafeteria so he and his buddies can be first out to recess. With the five-minute clean up warning, that leaves about ten minutes to eat. Who can eat a full-size lunch in ten minutes while carrying on a conversation? Picture nonstop talking food filled mouths. Ick. I once had heard a rumor that the powers that be would rearrange the school schedule so recess would be before lunch. I thought this would be great. What kid would stop eating to line up early for class? Eating would drag on to the bitter end. But it never came to pass. *** While I was discussing all of this with Dr. Sheils, I overheard one of the other doctors explain to Emlen that is it so important to eat well when you have CF, for health reasons. However, in Emlen’s case he needs the extra energy to keep up with his activities. At swim practice, Emlen, age 10, trains in a lane with the 12-year-old girls. They are some of the top swimmers in the league. “If you eat, you will be healthier and you will not run out of energy at practice. You can stay ahead of them. Wouldn’t that be awesome? To beat them…” Emlen’s competiveness kicked in. With a big mischievous smile on his face he nodded in agreement. He had a goal. We have another “check in to see where we are appointment” at the end of February with more PFTs, x-rays, height and weight checks. Emlen may be headed for a hospital stay and clean-out in March. I hope we make it to then. His cough is still pretty rough. And, I am sure we will be exploring the malabsorption issue. I am not looking forward to the fecal fat test. It is just so gross, collecting all that poop. In the meantime, what I really hope for, is that only Emlen eats the new supply of M+Ms. They will be so tempting. *Chemicalicous was coined by Henry, at the age of ten, after noticing the huge list of ingredients on a Good Humor King Cone. He had just finished reading Michael Pollan’s, The Omnivore’s Dilemma, A Natural History of Four Meals, the Young Adult version.
**Staphapseudococcalgillustreptaspernomous is a combination of every bug Emlen has had in his lungs. I can never remember the specifics when Dr. Sheils explains the throat culture results. I blank out. When I repeat the information to Christian after the appointment this is the word that comes to mind. You would think that I could remember. But the reality is that I am much better with directions on how to make Emlen healthy. Give me a list of what to do and I am on it. ***While I was writing, editing and rewriting, Emlen did a very nice job with his school lunches this week. The first thing he said to me when he walked in the door after the bus dropped him off was that he finished ALL OF HIS LUNCH. He is pretty proud of himself. I think he ate all of his food is because it is too cold to go outside and after lunch recess has been reduced to going back to the classroom for more conversation. This supports my theory that a pre-lunch recess would certainly be the thing to do. I still have every hope that when it is 32 degrees next week and outdoor recess is reinstated, Emlen will continue to eat all of his lunch. What is that common quote about insanity – to do the same thing over and over again while expecting a different result? I think I am there.
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