 Dear Susannah, I am not sure where this is going. There is a lot going on. All of a sudden. I had been flying a little too close to the sun earlier this spring. Everything seemed to be on track. Weather: April showers bring May flowers. Projects: our new front yard is going to be great, new trees, new hedges and new lawns. Health: even though Emlen was pretty sick over April break, which involved a visit to the pediatrician’s office for strep and flu tests and then an emergency trip to Children’s Hospital just to make sure we were doing all that we could for him, he managed to get over it. On his own. It was work without the antibiotics and it made for a pretty crappy spring break, but we had the time for the extra nebulizer and vest treatments. What made me soar were the results of his throat culture from that emergency appointment. They were negative. “Negative of everything,” the doctor said. “Negative of Everything,” I repeated. I felt relief in every fiber of my being as Emlen headed off to NYC with the middle school Wind Ensemble a week later. We had not had a Negative of Everything throat culture – well, since I can remember. He was healthy, in great spirits and ready to be a tourist. He was still most excited about the motor coach, with its Wi-Fi and movies. When he arrived home, he announced that he now loves ThePrincess Bride, one of the many movies featured on the bus. Before this journey he had refused to watch it, even with the rave reviews from just about EVERYONE…who doesn’t like The Princess Bride? “It is boring,” he argued, right up until the bus pulled out of the parking lot. Now it ranks up there among his favorite movies. The trip was so well run, so action packed that in three full days the kids saw everything there is to see in NYC. Almost. They missed the Empire State Building, the Statue of Liberty, the MOMA and a few hundred other art museums. (Reasons to go back.) The band managed to squeeze in lunch at Grand Central Station, a few hours on Times Square, dinner at the Hard Rock Café, the New York Philharmonic, Central Park, the Natural History Museum, Trinity Church and Wall Street Station, the World Trade Center, the 9/11 Memorial, the Broadway play Mean Girls,which if you ask Emlen to sing the song “Karen” for you he will happily do so, and then, finally on the last day, the band participated in a workshop with Peter Boonshaft and gave a concert on Lincoln Center Plaza. Emlen arrived home, healthy, jazzed, and, even … dare I say it? ... a bit manic as the weekend’s adrenaline continued to course through his system. Then he slept for seventeen hours. Eventually my Negative of Everything high subsided, like Emlen’s adrenaline, and I floated down to the stratosphere. How could I help it? How can anyone help it at this point? It is mid-May and it is still raining. It is still cold. The flowers are trying to bloom. And it is really muddy; a wear your rubber boots every day kind of muddy. I constantly hear people complaining about the weather. We have had our fair share. Secret: even though gray days can be depressing, and they bring me down I kind of like them. They are little quieter, a little less frantic, drink lots of coffee type of days. Also, I have pretty awesome up-to-the-knee-made-for-the-mud mud boots. They are French. And really muddy. I wear them everywhere. I wore them to the Concord Center for Visual Art’s Annual Concord Carlisle High School Art Exhibition and to the Colonial Inn for lunch. I paired them with a dress. The dress’s pattern has muddy overtones and coordinated well with the boots. They are also great in the yard for keeping your feet clean, warm and dry while moving bushes and you know that I move a lot of bushes. I found them on Zappos after I ordered about fifteen pairs of boots and turned my living room into a shoe store. This is how I buy shoes. I try them on for days, keep the pair (or two) that is fantastic and send the rest back. However, last Thursday, I plummeted to the ground, with a huge muddy splat. My flying days are over. Emlen’s throat culture test results from the last follow up clinic appointment are not good. It is a little overwhelming. The staphapseudococcalgillustreptaspernomous * is back. OK, not really. That is an amalgamation of all the names of all the bacteria Emlen has had to fight over the years. Until recently I have not been able to keep track of them. I have always been more concerned about what I need to do to fix things. I know I have mentioned this before. However, I am beginning to learn the names and characteristics of these bugs. I can even repeat them if I need to. However, I cannot spell all of them without a little help from Google. Emlen has two different bacteria growing in his lungs. Stenotrophomonas (I Googled that spelling) which, seems to be a version that is not sensitive to any oral antibiotic. (The pulmonologist is going to do some research and get back to us on that.) And pseudomonas has reared its ugly head. (I knew how to spell that; I did not Google it.) There is just a smattering of them, but they are still present. It is not the super bad one with a mucoidal coating which is resistant to most antibiotics. Emlen had that when he was two. We beat it. Although his pulmonologist permanently holds it over our heads with a “I know it is in there. It never really goes away,” disclaimer. We have been trying to eradicate the new pseudomonas since October. I thought we had when we got the Negative of Everything throat culture, when I flew into the sky. You want to get rid of pseudomonas as quickly as possible since at any minute it could mutate into the mucoidal version, and then you are in for a super long and hard End Game ** kind of fight. After talking to the doctors, I managed to get all the inhaled antibiotics ordered in one afternoon. That is a record. We start taking them as soon as they arrive: one month on Tobramycin (Tobi) and the next month on Cayston. On and off. For a year. When I informed Emlen of this, he started crying and crawled under the guest room bed. That is his go to place when he is upset. He is getting a little big for it, but still manages to squeeze in. After coaxing him out, he explained to me that he was upset about the Cayston, not that he is incubating pseudomonas. The last time he took Cayston he was three-years-old. He does not remember it. It uses a completely different delivery device than his other daily inhaled meds. I dug out the old equipment. Pieces are missing and the batteries had leaked, leaving those fuzzy acid crystals growing over all the connectors. We need a new one, but the visual did help to waylay his fears. I also found a photo on Instagram of another kid with CF demonstrating how to take Cayston. That helped too. Fortunately, Emlen has a sinus surgery follow up appointment this week. I figure I can squeeze in a Cayston lesson at the CF clinic, since we will be in the area anyway. I neglected to do the sinus surgery follow up appointment in the fall, when I should have, because as soon as I got Emlen home, I turned around and headed back to the hospital for Henry’s sinus surgery. Then we jumped into the mono thing and shortly after that there was the appendicitis incident (more on that later). Henry had his final sinus surgery follow up appointment a few weeks ago. The doctor said the inside of this nose looked so good that he “never ever” wanted to see him in the office again. Such good news. First, because Henry had been dealing with sinus issues since fifth grade and they are gone. Second, because we have to add a speech therapist to his medical roster. Henry’s vocal cords seem to close up mid swim work out, usually right after his exercise induced asthma kicks in. Then he really can’t breathe. It got worse this year with high school swimming. The speech therapist will teach him to recognize the onset of the symptoms and how to control them. Apparently, this is not uncommon among athletes. *** I am glad there is a treatment because I think it is important that Henry can breathe, but it means several trips to Mass Eye and Ear this summer. That place is harder to get to than Children’s Hospital. So, one less doctor is a good thing. I am sure Emlen will still need to see the ENT … people with CF usually do. What troubles me with all the health issues is the house potentially breaking. I still stand by my theory of appliances and/or the house falling apart when one of us is sick.It has not stopped. On Christmas day the microwave broke, again, just as Henry announced he had a sore throat. Then, as he was complaining non-stop and unable to eat or drink anything, the kitchen faucet started leaking. Drip. Drip. Drip. And so on. After a trip to the pediatrician’s office on a Sunday (ugh!) and visit to the ER on a Tuesday evening (another ugh!), we figured out from a simple blood test that Henry had mono. I think I am allowed to tell people this now. At the time I was not, because of the whole kissing disease stigma. After a couple of ER saline boluses, some steroids and days of sleep Henry felt better. But by that time the faucet was a steady of stream of water. All I can say is that a steady stream is much less annoying than dripping. Henry recovered pretty quickly. He was back in school in a week and in the pool in two weeks. Our microwave recovered quickly too. I bought a new one and paid to have it installed. As for the faucet, I ordered a new one from Amazon. It was at our door in twenty-four hours. Christian installed it. Then a month later our dishwasher broke. It did that thing where it just wouldn’t stop running. It just cleaned the dishes for hours. This time there was a little water on the floor. As I mopped it up, I wondered out loud to anyone that happened to be listening, “Who is getting sick now?” Seventy-two hours and a misdiagnosis later I was in the OR for a ruptured appendix and an abdomen infection that you wouldn’t believe. It took six liters of water and days of IV anotbiotics to clean out my insides. (More on that shortly, I promise. I am still processing my almost near-death experience.) By the time was I home from the hospital and well enough to get out of bed, the dishwasher had been repaired. That was nice. Henry just got home from school. I have to take him to the pool to finish his employee paperwork. He is going to be a lifeguard this summer. Crap. I just remembered I need to get his passport out of the fire safe. He is going to be late… Hi to Miranda, Iris and Tim xo Elizabeth P.S. Emlen’s appointments at Children’s went well, although Emlen did not wear a coat. He was pretty cold walking around the campus. I told him to, but he is twelve and ignores me a lot. Anyway, the ENT said he “never” wanted to see Emlen again unless there was something going on. Emlen did not get quite the “never-ever” that Henry got a couple of weeks ago, but I will take it. The CF clinic appointment for the Cayston lesson was good too. I remembered, from way back when, how to administer the drug. But most importantly I learned that if I forget any of the steps there are quite a few instructional videos on YouTube. Thank God for YouTube; you can figure out how to do anything there. Emlen might have fun with this one, if taking an inhaled antibiotic three times a day is fun. To mix the medication he will have to squirt a saline vial into a powdered filled glass vial and shake. **** Just like a mad scientist. He can mix vials while he changes the rubber bands on his new braces. Yes, braces this summer too. I will set up a Dr. Frankenstein-type lab for all the equipment. It will be on the ground, because that is where we are. Firmly. *First used in Blog Post “Good News, Bad News, Good News Again” (9 January 2018)
**I have not seen Avengers: Endgame yet, but I imagine, and from what has been leaked to me by the kids and social media, that getting rid of mucoidal pseudomonas in CF lungs is a similar kind of fight: casualties, exhaustion, sacrifices, and ultimately, victory. I am assuming the Avengers are successful. You really can’t leave Ant Man stuck in the sub atomic particle universe. Can you? ***This is different from something being common. Just because a thing is not uncommon does not necessarily make it common. I learned a lot at that appointment. ****Cayston is going to totally mess up The Nebulizer Vial Project, 2019. The canvases do not have room for the extra six vials per day. I need to write a letter to Paul to discuss. And maybe he could help brainstorm on what to do with the 5000 coat hangers I have sitting in the basement. They are becoming important.
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