A quick thank you to everyone who helped and supported Emlen and lent a hand to our family over the last couple of weeks. It is truly a gift to have so many great friends.
To Max and Rebecca for visiting in the hospital that first day. And then following up with all those face time calls for company while we were housebound.
To Henry and Christian for visiting later that day, bringing our favorite Dino’s dinner and hanging out on Saturday night.
To Baba for sending the “perfect” backpack that Emlen truly believes will solve all of his organizational “problems.” And for the great remote-control car. It is fun at home too.
To Grandy and Grammy for the super surprise visit on Monday on your way to the airport from your weekend in New Hampshire.
To Owen and Meg for squeezing a visit in between school and Arts Night at Thoreau. I know the schedule was pretty tight. And for the presents of Fart Putty, the Star Wars Paper Airplane book, and the game of Blokus. All of them entertained us over the following days.
To Gracie for stopping by on Tuesday morning on your way to classes with the digital fishing rod and reel – a perfect present.
To Sam for the video game playdate on Wednesday afternoon after Emlen was home and settled. Always great to hang out with you.
To Emmy and her family for dropping off all of the homemade get-well cards and giant poster from Emlen’s classmates. (We hung the poster on Emlen’s bulletin board in his room.)
To all of Emlen’s classmates and teachers for taking the time out of the school day to make all the get-well cards and posters. That was a lot of work.
To Noah, Simon and Amy for joining us at Helen’s for an early dinner after a long day of follow up appointments in the city. And for the cards, poker chips, more fart putty (I am not sure that is what it is, but that is what we use it for) and for the plastic army men. Emlen loves them!
To Elliot for hanging out with Emlen while I took Henry to the pool to work on his breaststroke. And for the Cabela’s gift card. Emlen can’t wait to go to the store and spend it.
To Herrick for stopping by and playing more video games with Emlen before a Wednesday swim practice. (Emlen informed me that he logged more than nine Xbox hours that week.)
To Rika for making Emlen his favorite chocolate cupcakes with chocolate buttercream frosting. They helped to put most of the weight back on that he lost while in the hospital. Yum!
To the Stevenson and Tavakol families for driving Henry to and from all his activities and feeding him while we were otherwise occupied – the feeding part especially.
Also, to Uncle Doug, Larry, Paul, Julie, Brian and Phil who raised money and rode with the LifeLineRacing Team in the annual Cystic Fibrosis Foundation’s Cycle for Life on Saturday June 16th in Half Moon Bay.
To Uncle Chris, who is raising money and awareness for cystic fibrosis by riding in the Massachusetts CF Cycle for Life 2018.
And finally, to everyone who shares and likes this blog on Facebook, Twitter and all other social media platforms (especially the shares. You know who you are. You are awesome). It really helps us raise awareness for CF.
We appreciate all of it.
Here’s to a fantastic summer.
Today is household chore day. Laundry, grocery shopping, and some cooking. Laundry is almost finished. I am grocery shopping after lunch and cooking while the kids have lessons with their math tutor. Matt has done a great job with Henry over the last three years. Emlen, who is pretty math smart and always doing huge calculations in his head, stumbled this year. I am not sure if it is because he has been sick, bored with the tedious homework assignments, or just wants to be like his big brother. I am leaning towards the “wanting to be like his big brother” theory.
Oh, and entropy fighting is also part of chore day. I thought I had gotten ahead before the whole hospital thing, but I backslid while Emlen was on the inside. Then, once home, I thought I could catch up. But I am unable. Frustrating. I had once thought of myself as a superior entropy fighter, equating my skills with those of the Avengers. I am losing. Moths have infested Christian’s closet; a woodchuck has taken up residence under our deck, mildew is growing in the bathrooms and the neighbor’s cat is peeing all over our herb garden. The moths I can deal with pretty quickly. The woodchuck is a problem, but as long as he leaves our little vegetable garden alone we should be OK, at least for a bit. Bleach is the enemy of mildew, got that covered. It is the cat that will take some effort. He is wreaking havoc in our backyard. Time to get out the orange oil, buy and plant some rue, the scaredy-cat plant, and load up the super soakers.
I started with the entropy issues this morning. While rummaging around in the guest room closet (I was looking for extra wooden hangars for Christian’s clothes, because if I have to clean his closet I might as well make it spiffy looking), I ran across the basket Tim left here in February. Weren’t we supposed to get together this spring? What happened to that? We should plan something for the summer. Like now. I think the most reliable way to get a day on the calendar is to have Henry text Miranda. They can nag us. That seemed to work last time.
I had no idea it was the middle of June. I mean, I did, but it had not really registered. On Monday I was chastised for being oblivious. Apparently, I should have known that summer had started. I accept these offhand comments from this particular friend. She is smart, funny and a total free spirit – pretty much the opposite of me, the free spirit part, at least. Her long blond hair, parted down the middle, is always beach messy. She is cavalier with her choice of workout clothes, contrasting greatly with the over the top, carefully curated outfits worn by the women in our fashion-forward health club. And I do not think I can picture her with shoes on her feet. Ever. Maybe flip flops in the winter. I really enjoy her stories about how she, on the spur of the moment, just leaves her family and takes off to the Pacific North West for three weeks to catch up with college friends. “They do not even know I am coming.” she announces. She is good at this, flitting in and flitting out.
I find it fascinating. I wonder if I could ever do it. You and I can’t even plan some weekend three months in advance. I am going to work on this, being flitty. ("Flitty" does not seem to be a well-used word these days, but I am going to use it. My architecture professors used to make up words they thought should be used all the time. Modernity, for instance. That one they constantly tried to implant in our brains. In architecture school it made sense, but in real life? "The modernity of the can of Spaghettti-Os." "The modernity of the diaper pail." "The modernity of the third grade soccer pitch." Nope, it does not work. I guess if I remained in the design profession I might have used it more. But "flitty" I think I can use on an daily basis.) I can start small with the flitty thing. I will drive up the coast to surprise you on a random weekend. You are my college friend after all. We can flit together.
Anyway, this week, my free-spirited friend announced that she had had the best weekend. “My husband was out of town and my son and I partied the whole time.” When she said this her face was gleaming with pure rebellion. She looked even more relaxed than usual. “It was our birthday weekend. My husband came home to pizza boxes scattered all over the place. There were even blueberries on the ceiling! It was the best! I was still in bed when he got home at eight on Sunday night.”
I stared at her for a bit before responding, trying to wrap my head around this horror show, but I couldn’t.
My mild OCD (I use the term loosely so as not to belittle all the people who really suffer from it) has kicked in. It happens when I am under stress. If anything is out of place I get irritated. I realized it was back last Friday while Emlen and I were at Children’s for an appointment. A young woman, standing in front of me in one of the many elevators we use to get to the pulmonary floor, had a slightly off-center tattoo on her back. She was wearing one of those trendy shirts with fabric only in front, held in place with ties that wrap around the neck and waist. Her back was bare. She was young and could get away with it. And I suppose she wanted to show off her tattoo, which was a giant eye. (And by giant, I mean about six to eight inches across and just as high, complete with an eyebrow and lashes.) It was just about a half an inch off the middle of her spine. Its placement was causing me to twitch. My mind was relentless, “Ugh, do you think she knows. Can she see it? Does it look symmetrical when she turns around and views it in a mirror? It must. Is anyone going to tell her?”
Emlen noticed too. We chatted about it on the way home. “Phew, it wasn’t just me. If you saw it, then maybe I am not so crazy.” I said out loud. However, I wondered to myself that Emlen might be crazy too. I guess it could go either way. *
Hold on ... need to change the laundry over. I am writing in my laundry room/office; a room that will be very nice when finished. We are so close, just one more bookcase. Then I can have all my art books in one place, rather than in “decorative” piles all over the house. I can really multitask down here, laundry and writing at the same time, which seems to be super productive. Usually I forget about the laundry as I am running around on the upper floors organizing closets, chasing away outdoor cats and dealing with children, who by the way, are at school today. Both of them. Finally.
I think that is the real reason I am being productive. The kids. At school.
Back to my free-spirited friend, the one who had partied all weekend sans husband. I looked at her and said, “You realize that it is opposite in most people’s houses.” She let out a really loud laugh. She knows this is true. I laughed too, and all I could think is how I am fortunate to have a husband that is just as “OCD” as I am, maybe even a bit more so.
When Emlen was finally discharged from the hospital, we arrived home to a house that was in pretty good shape. Laundry was in progress (that is its perpetual state. Laundry is my Sisyphus. It never ends. Did I mention that I am doing it now?). Henry had left for his eighth grade DC trip in one piece. We had some groceries and the yard was cared for, neat and tidy. Even the beds were half-made.
Arriving home to party weekend pizza boxes and ceiling-spread blueberries would have sent me over the edge. To deal with that and then almost immediately the whole home medical IV thing – waiting for specialty meds to be delivered and refrigerated, scheduling the home health care nurse visits for labs and dressing changes, mixing the antibiotics, which seems to require a basic chemistry degree, administering IV’s two times a day, making sure Emlen does his nebs and chest PT two to three times a day, replacing a seasickness patch every three days without getting any of the medicine in your eye because, if you do, it will cause your eyeball to blow up (not really, just lots of dilation making you look as if you have been on a bender for days) and the kicker, forbidding an active eleven year old boy to sweat AT ALL for fear his hypoallergenic PICC dressing will slip off. (Yes, Emlen is allergic to some product the hospital uses. His whole right arm was one big itchy oozy disaster. We almost had to cut the whole cleanout short; the reaction was that bad. This summer we get to see an allergist to figure out what caused it) – I would have had hives, a migraine headache, sick to my stomach case of hives.
Fortunately, I only had to deal with the medical stuff, and for the most part it is going pretty well. Although last week I did get the headache-stomach thing, after all of the above had settled down and Emlen’s rash was dissipating. PTSD? Who knows?
The day of the lopsided tattoo, we met with Emlen’s team to do labs, check the PICC dressing, see if he was still itchy and to do more PFT’s. Emlen had blown a pretty bad PFT number a few days before, twenty points lower than usual. It was discouraging. Even Emlen was upset. I think he is beginning to figure out that that number is a key measurement of the progression of his disease.
(Not to worry, his PFT’s are up again.)
After much discussion, mostly about the rash, and how it was getting better, everyone decided that we should continue the IV antibiotics for another week to take care of the bacteria that has been occupying his lungs. The two types that showed up on his bronchoscopy culture are “sensitive” bacteria and can be easily dealt with. The infectious disease doctors, who I think I mentioned before, the ones that we are adding to Emlen’s doctor roster, said so. According to them, Emlen did not have any of the bacteria that have either morphed so much that they are eons ahead of modern medicine, or the really bad one that requires inhaled antibiotics for one month on and one month off for a year. He had that ages ago. So, with only two weeks of enduring five different antibiotics, he should be good.
However, Emlen’s bronchoscopy (ooh, I finally figured out how to spell that word, no little red squiggle line for me) revealed (and this is why the pulmonologist insisted on growing the cultures for days) aspergillus.
It is fungal.
It is not treatable with antibiotics.
And it seems that the longer he is on the IVs the more he coughs. Without the bacteria in his lungs as competition, the aspergillus has a free pass to take over. Super. He is also not exercising right now because he CANNOT sweat. That is not helping with the lung clearance.
We have another follow up appointment tomorrow in pulmonary with a CT scan thrown in for fun. Hopefully his medical team decides to pull the PICC and we can be finished. The temperatures are going to be in the nineties this weekend and early next week. There is no way I will be able to keep Emlen from sweating. The hypoallergenic dressing will fall off.
The CT scan should show how invasive the aspergillus is. Then we can figure out which anti-fungal med Emlen will need and for how long he will take them; most likely it will be a minimum of three, but maybe up to six, months. They work more slowly than antibiotics.
This is all good news. However it could get a little better. I am wondering if we can avoid the fecal fat test for a while longer. That would be awesome, because, one word, ICK. Before the clean out, it was strongly suggested that I collect Emlen’s poop for three days. He has not been digesting very well. If he “fails” the fecal fat test, then we can override the recommended dosage for his enzymes. I had to do this several years ago and it worked. We need to do it again. But who wants to do a fecal fat test? So far, I have managed to avoid it since Emlen has been on antibiotics for ages. I guess they skew the results; no good bacteria to help with digestion. Fingers crossed that the antifungals will do the same and we can postpone for a few more months.
Probably not, though.
Where is the box of latex gloves?
Maybe we could wait until we are well into the summer. The next couple of weeks are packed. Henry’s Bay State Games qualifier meet is on Saturday. Summer swim team starts. We have house guests next weekend. I have to organize all the summer events. (I swear there are 500 emails in my inbox about stuff for this summer.) Also, Henry is graduating from middle school. (You should have seen him in his extra slim suit for the eighth-grade semi-formal dance. He is such a fashionista, patterned shirt coordinating with his pocket square and double bow tied dress shoes.) And Emlen is graduating from fifth grade, which is less involved but still needs recognition. Next Wednesday I have to be in two places at once; both ceremonies are roughly at the same time.
I wonder how I am going to pull that off?
This is why I have no idea where we are in the calendar year.
Have to go. Need run to Trader Joe’s before the traffic picks up. Getting through the rotary is a nightmare after two in the afternoon.. Maybe TJ's has a bubble bath solution. Emlen has not bathed in days. When the PICC comes out, he will soak for hours, only sweet swelling boys for me. And the laundry needs to be changed over again. I will fold it tonight while binge watching Netflix. It is a good time in the laundry cycle, the rock almost at the top of the mountain, a bit of reprieve in sight.
Have a great weekend. I hope you make it to the beach and are not stuck at home grading final papers. Can you take the papers to the beach?
Hi to Miranda, Iris and Tim.
*Emlen read this while I was editing. He insists that he is not crazy. I told him he is right and that I love his keen attention to detail. I hope that worked. If not, it is something he can talk about in therapy years from now.
Emlen’s friend Max came to visit this morning. They have been friends since pre-school. It is always good to have visitors when you are stuck in the hospital.
The show Power Rangers is on TV. I am sitting on my little parent cot while Emlen rests, mesmerized by his once-favorite childhood TV show. It is really terrible. I did not enjoy it back in the day, and I do not enjoy it now. When he was little we allowed Emlen to watch many terrible TV shows, so he would willingly do his daily nebulizers, vest therapy and chest P/T. Now he watches tons of YouTube. I am not sure which is better.
Emlen and I have checked into Children’s Hospital for what I am trying to reframe as our first vacation of the summer. We have a great room. “The best on the floor,” everyone says. It is big with lots of warm sun light. Emlen has a snazzy hospital bed which he treats like an amusement park ride. We have an interactive TV with video games and movies, free WIFI and room service. Free coffee too, but I never seem to get to the kitchen when the pot is newly full. It is usually empty. I guess all the parents here are living on coffee. Every once in a while, we get to see a helicopter land on the building next door. What more could an eleven-year-old boy ask for?
Emlen’s cough came back. Not quite like the cat that came back the very next day, but pretty close. It took about ten days this time. I told Emlen’s pulmonologist, when we began the last round of oral meds, that I had pretty much had it with the back and forth this winter. She was going on and on about more Bactrim, but I stopped her, “I had shingles this winter. We really need to just take care of this once and for all. We need to have a good summer.”
If his cough returns, come in for a bronchoscopy and IV antibiotics.
So, here we are.
(As for shingles, it was a pretty mild case. I just thought I was having another allergic reaction to another something, the typical winter dry skin stuff. But no, it was shingles. I spent a month out and about exposing anyone who has not had the chicken pox to the virus. I should probably hit myself with a Karma Mallet. But then, there is a chicken pox vaccine…so maybe it is their fault for not being vaccinated. You know how I feel about vaccines.)
Now we have switched back to watching SpongeBob. Much better. Perhaps this afternoon we can watch a Marvel movie.
I think we will be in here until the middle of next week. Or we might go home sooner if the samples from the bronchoscopy do not grow anything unexpected. Emlen has been dealing with the same bug for what seems like forever. I found out yesterday that he has had eight rounds of antibiotics since last March. I guess that is a lot. At least the doctor who performed all yesterday's procedures thought so.
Dr. Katz reminds me of your husband, Tim. His looks, mannerisms and goofy quality are all Tim-ish. Then I noticed his shoes; really fancy black oxfords. They were at odds with his surgical scrubs. I guess I expected a more laid-back foot wear choice for a surgeon. Something comfortable, like Tim would wear. Anyway, Dr. Katz was really good with Emlen, answering every one of the one-thousand questions Emlen threw at him.
Emlen does not stop talking or asking questions when he is excited or nervous. It was nonstop for the hour we were in the pre-op room. Every nurse, PA or doctor who came in to have us sign a consent form was coerced into a conversation. They were so good about it. Finally, the nerves vanished when the nurses pushed the “relaxing” medicines through the IV. Emlen started giggling and laughing, saying, “I feel really weird.” It was pretty funny. He asked no more questions and just laughed and laughed while they wheeled him to the OR.
Infectious Disease just visited. They are working with the CF Clinic to figure out how to get rid of whatever is growing in Emlen’s lungs. Great. Tons of questions about the cat and the litter box. Ha! As if the any of boys in the house change the litter box.
The first time we went through a cleanout at the hospital was pretty traumatic. Now it is almost routine; and I feel it is important to find the humor in the little things – like laughing at Emlen while he is clearly stoned out of his mind and REALLY, REALLY enjoying it, or when he is waking up from the anesthesia going on and on about how he is ready to run the mile for gym class.
That was the only thing that made him happy about this hospital stay; skipping out on the mile run in gym class. He is missing all the fifth-grade graduation hoopla this coming week, the boat field trip, Arts Night (he had a drum solo), Kimball Farms for games, mini golf and ice cream, the all elementary school band night. Also, we will have to revamp his camping birthday party. Emlen is mad about this. We are not really sure he should spend the night in the great outdoors with a PICC. The camping birthday parties are very Lord of the Flies. The boys whoop it up in the great outdoors until the late hours of the night while the more adventurous, outdoorsy dads sit by the fire taking it all in (or ignoring it all?? Maybe, I do not know. Moms are not allowed, which I am totally fine with. I enjoy my night alone.) I think we will downgrade to just the potato cannon, fishing and hotdogs over the fire with no overnight.
Chest P/T is here now. I will reframe this as massage therapy. Or maybe gymnastics? Or torture? Emlen is upside down on his amusement park bed getting pat-pats.
Tonight, Christian and Henry are bringing a whole bunch of presents and dinner. The food here is now “healthy”. Emlen used to love it, but it does not seem as yummy as it once was. French fries have been replaced with golden roasted potato wedges and the chocolate chocolate cupcake is now chocolate pudding with chia seeds. I do not know any eleven-year-old boy who likes chia seeds. Emlen certainly doesn’t. And it looks to me as if the chicken fingers are no longer deep fried. They are baked. There are other items missing from the menu, but I can make up for that with the pudding and ice-cream from the floor’s family kitchen. Emlen did enjoy the whole wheat pasta with marinara sauce he had for lunch. But a favorite dinner from his favorite take out restaurant in Concord might put some color back in his cheeks.
Never mind, the upside down pat-pats put the color back into his cheeks – nice and rosy, all his blood rushing to his head.
OOOH! Emlen just crawled out of bed looking for the helicopters. He is sitting on the window sill taking in the view. This is a good room.
He does not want to watch a Marvel movie. So, I guess I will work on organizing the twenty-three thousand digital photos I have been ignoring since the dawn of digital cameras.
Or maybe I can finish part two of The Longevity Series for the blog. I was about seventy five percent of the way there when I had to deal with the above. I feel that I have left people hanging. Even the school librarian wants to know when it will be posted.
And another helicopter ....
Hi to Miranda, Iris and Tim.