I thought it was mud season. Even the sign on the local road says so. We are in New Hampshire for the weekend. It is the middle of April, but according to the temperature forecast the high today will be 26-degrees. Mike, the man who had to tow our car out of a 3-foot snow-filled ditch twice, informed us that the ponds are still 18 inches thick with ice. (I am going to say that again in case you missed it. Mike had to tow us out twice. It is a long story, and, for the record, I thought we should walk rather than drive. My new GOR-TEX Italian hiking boots are pretty awesome. Walking in snow is now a pleasure. Christian’s nine-year-old boots have holes in them. Maybe that is why he wanted to drive.)
Yet, even with the weather, the weekend away is a welcome reprieve from the busy-ness of last week. We were in Boston a lot. Some of it was for fun. Some of it was required and not fun.
Ten days ago, Friday: MFA with Susan, friend and Pilates instructor extraordinaire, to see the Klimt and Schiele exhibit. It was quite good. We had a fabulous lunch.
A week ago, Sunday: MFA again with the Pearson Lo Family to see the M.C. Escher exhibit, which I appreciate, and the kids really enjoy. We had a fantastic brunch at the museum’s “fancy” restaurant. I love this place for two reasons: first, because you dine while seated next to a Yayoi Kusama painting, and second, because Emlen, who is enamored with the menu, eats his weight in hash browns, eggs, and white chocolate mousse.
Tuesday: Trip to Children’s Hospital to visit Emlen’s pulmonologist for a follow-up appointment at nine in the morning. I find driving in rush hour traffic exhausting. Emlen’s PFT’s are back up. So, after the usual tests and a quick exam we were dismissed with a plan in case the cough comes back – test result dependent of course. (Did I ever say rollercoaster?)
Thursday: Emlen and Henry’s annual trip to the see their ENT at Children’s. Emlen’s sinuses seem to be fine which is odd for a CF patient who refuses to do his daily saline rinses. Henry’s sinuses, on the other hand, are a mess even though he does not have CF and diligently does his saline rinses at least two times a day. The nose scope revealed inflamed adenoids. If we can’t get on top of the current infection, surgery for Henry is potentially on the horizon.
Friday: At this point I had sort of mentally prepared myself for another trip back to Children’s to stay the weekend on the 9th floor CF ward. I also considered hiring a real estate agent to help us find a city apartment. However, due to the good test results from Tuesday’s appointment Emlen’s pulmonologist’s plan does not involve IV’s at this time. Yay! No need for an apartment this week!. If his cough comes back, we are going to try a different and stronger oral antibiotic. Still in a holding pattern, I guess.
The pulmonologist also said that the arrival of spring should bring relief.
When is that going to happen?
It is snowing.
I should have brought a hat.
Hi to Miranda, Iris and Tim,
I have the house to myself this evening. That rarely happens – me in the house, alone, at night. I asked Christian to take Henry to his saxophone lesson. They left a few minutes ago. Emlen is at his Rock Ensemble class. I have to pick him up in 40 minutes. OK, so I have 40 minutes to myself this evening. It is not quite enough time as I am feeling behind, which is weird, because the only thing I really HAVE to stay on top of is the laundry (ick), pay some bills (more ick), feed people (I do not mind this) and generally be a nice mommy (so hard sometimes).
Maybe the reason I feel behind is the nagging sick that has plagued Emlen all winter. It wears on me; a constant background worry that has been so on going. We had another due diligence appointment at pulmonary on Friday. I call it “due diligence”, because while Emlen is not really sick, he is not well. The Sunday before he spent the whole day hacking and was having trouble breathing. That, combined with the whining, lack of appetite and just being plain ornery when he is not receiving one hundred percent of the household attention suggests something is not right.
Christian took the day off work to come with us. Emlen and I always make a day of it; doctors and out to lunch. We have done it quite a bit this winter. I think Christian was feeling a little left out – especially on the lunch part. Emlen goes on and on about the restaurant where we usually eat. It is his favorite place, just a quick walk from the hospital. He is so determined to eat that I do not think he even notices the clouds of cigarette smoke we walk through on the way there, puffed into the air by the adults who are banished from the medical campus. When we are seated, he immediately starts on the bread and olive oil appetizer and then moves on to clear his plate of chicken fingers and fries. For me, though, the restaurant is not my favorite. The service can be slow. I am rarely brought pats of butter for my bulletproof coffee. And there is usually something wrong with the turkey burger that I order. This time it had the consistency of a hockey puck. However, kids eat for free, so it is cheap. Can’t beat that. Once, I suggested that we try somewhere else. Emlen looked up at me and said, “Sure, I saw a McDonalds down the street.” I think I am stuck with the hockey pucks.
At the clinic visit beforehand, I am asked what seems like 900 questions by a new doctor. She is very thorough. She wants to know all about Emlen’s daily therapies. I repeat this at every appointment, especially when it is not our regular pulmonologist. It used to be a little frustrating, but now I have my story down. I think the staff is checking to see who is keeping up with all the required meds and therapies. A while ago Emlen’s pulmonologist confessed that there are so many patients who do not do everything that is asked of them. I can sort of understand that. It is a lot. I am fortunate that I can stay at home to manage Emlen’s healthcare. A therapist once told me that kids with health issues do better when one parent is at home. “Every touch counts. Every touch helps.”
After the interview, Emlen is poked and prodded. I am sure I have used this language before, but there is really no other way to describe it. He is really poked and prodded. Lungs are listened to for crackles. His stomach is massaged for GI issues. A culture is dug out of his throat to find out if anything is incubating within the deep recesses of his lungs.
And of course, a lung function test (PFT) is performed to measure his lung capacity. This is usually done twice, pre and post albuterol. Emlen’s results were down ten points from the last test four weeks ago. Since we are already doing all of the daily stuff that is asked of us, and more, Emlen is prescribed another round of antibiotics.
We have a follow up appointment in ten days.
I am not sure if Emlen is going to be happy or sad about this. He does not like going into Boston for appointments, but it might be different this time. On the day we have to drive back into the city his elementary school is celebrating the Book Character Parade’s 30-year anniversary.
Every spring, the students dress up as their favorite book personality and are lead around the school by the librarian, Mrs. Pettyjohn. Starting with the 5th graders, she picks up one class at a time, each adding to the end of the line. A giant snake forms, made up of face paint, ears, masks, construction paper, glitter and books, winding its way through a backyard of vinyl tiled dirt and brightly colored cork clad blades of grass. The kindergarteners seem a little overwhelmed, eyes wide open with unsure steps, while the soon to be graduating 5th graders strut, almost dancing as they lead the parade. Parents and teachers cheer. Lots of photos are snapped.
Neither of my children have been excited about this event. Henry has always felt self-conscious in costumes and Emlen can have performance anxiety. Henry managed the event by searching for the simplest book character to emulate. More often than not he was some preteen, wearing jeans and a t-shirt while carrying a small artifact from the book he recently read – like an origami Yoda puppet perched on his finger.
Emlen’s incredible mind has always come up with elaborate costumes. They take ages to construct. And then, for one reason or another, he doesn’t make it to school on the day of the parade. In kindergarten we spent hours cutting, painting and decorating. We distilled his ideas into a cardboard costume in which he could easily walk while still meeting his grand expectations. However, at the last minute he panicked and refused to participate. I guess the anxiety kicked in. But he was so cute… and all those craft hours…
Other times he has been sick or at a doctor’s appointment.
This year to simplify, because we are busy with band, swimming and a ridiculous number of weekend events, Emlen went the “Henry costume” route. He chose the preteen book character, Steve from “Science Fair”. He planned to wear jeans and a t-shirt, while carrying a large frog in a beaker. I have not read the book. It has something to do with frogs, beakers and science-y things. I know this because frogs, beakers and science-y equipment adorn the front cover. We hunted for the perfect frog on Amazon. Emlen found a big squeezable slimy one, choosing it over the cute stuffed animals. We ordered it. Thrilled that his costume was complete, he went to school happy. He loves checking things off of lists.
A few hours later the hospital called with the date and time for the follow up appointment. No Book Character Parade.
Maybe I can cancel the frog order?
Ack. I literally just got an email that the slimy frog has shipped. It was advertised as a stress reliever “ball” for kids. Hopefully it will still be useful. We can bring it to the appointment and relieve our stress while being poked and prodded. I will let you know how the visit goes and if the frog works.
Hi to Miranda, Iris and Tim.
PS. When Emlen got home I told him this appointment with Dr. Sheils was the same time as the Book Character Parade. After a slight hesitation he let out a huge cheer. “Mom, I have never been into that parade.” This is the first time I have heard joy regarding a trip to Children’s Hospital.
PPS. Emlen’s costume will not go to waste. His teacher needs a character. She likes that Emlen’s costume “Steve” is pretty easy to put together – jeans and a t-shirt. She is going to borrow the frog. It arrives on Saturday.