Toe Health Update - 2020 year end

We had an in-person appointment at our CF clinic last week and I thought it would be a good time to share a health update. Since March, our trips to the children's hospital have been reduced - we have had Telehealth appointments for quarterly check ins. Toe has recently had an ear/nose/throat appointment, a CF clinic check in, and a meeting with a new gastroenterologist (cystic fibrosis affects so much more than the lungs!). Overall, his health has been fantastic this year but with CF, there are always a few bumps.

Toe started Trikafta, the new triple combination therapy that affects CF at the genetic level last February, right after he turned 12 (the drug has been approved for ages 12 and over). Even though Toe has been on a double combination therapy for a few years now, we have really noticed a difference with this new medication.  

First, and most importantly, although Toe has gotten sick this year, he has not had lung complications. Normally, if Toe catches a cold or gets sick in any way, he starts getting a junky cough that just gets worse after his other symptoms dissipate. We often have to increase his twice-daily breathing treatments to three or four times a day to keep the mucus moving. Most of the winter is spent doing three breathing treatments a day as the cough comes and goes. To eradicate the cough often requires antibiotics. This year, Toe got sick a few times (including a sinus infection and tonsillitis), but the cough never came. We have gone almost a whole year without having to add extra treatments. I can not tell you what a time and energy saver that has been!!

On this new medication, Toe is not having to worry about eating all high fat, high salt, high protein foods any more, which means his body is doing a better job of absorbing fat. This is tempered a little by his huge growth spurt this year. He just polished off a gallon of egg nog in a week and has not gained any weight - ah, puberty! In general, Toe is thrilled that we are giving him larger portions of fruits and vegetables. It will always be a balancing act between getting Toe enough calories and fat and keeping him from having coronary disease later in life (a very new problem for people with CF who never used to live long enough to have coronary disease), but this has also been easier this year.

 So, here's the run-down from the doctor visits:

Ear/Nose/Throat: The nasal polyps he had grown a year ago that were concerning are GONE. His ears and nose look great and the ENT said that she doesn't need to see him again unless he needs something.

CF check in: Toe is now 5'3" and 105 pounds! He has grown FIVE inches this year. His PFTs (lung function test) were the highest ever. His lungs have generally been in pretty good shape, but this was amazing. PFTs are a variable number compared to other kids his height, weight, and age. They are given in percentage form, so mostly you look at the individual's PFTs over time to see whether they increase or decrease. For some people, PFTs of 80 percent are baseline. Toe's baseline is around 110-112 percent. He has been as low as 80. Usually if your PFTs drop more than 10 points suddenly, it requires a hospital admission for IV antibiotics to clear infection from the lungs. Last week, Toe's PFTs were around 122! We were absolutely shocked.

Overall, Toe's health and growth are fantastic and because we have stayed home he has caught fewer bugs this year. 

PFTs (pulmonary function test) measure the volume of air he can inhale and how fast he can expel that air

Gastrointerology: This is the area that caught me off guard this time. His bilirubin count is slightly elevated and they are trying to figure out what is happening. High bilirubin levels often cause jaundice. Toe had jaundice as a preemie but it went away once we got him on pancreatic enzymes as part of his CF diagnosis. Tricafta has a possible side effect of liver damage, so that is something they are very careful about. The doctor told me that his other liver levels were normal, so they don't think he is suffering from liver damage. This visit they did extra blood work to check bilirubin counts again and to test Toe for Gilbert's Syndrome - a rare genetic disorder that mostly only affects the bilirubin count. They also did a liver ultrasound to see if anything is unusual there. Now we wait for results and go from there. I have learned not to worry until we get results. It is a waste of my energy when I have so many other things I could worry about ;).

There were a few other minor things - Toe has been having acid reflux since we took him off Omeprazole (as recommended by the doctor), so he will be going back on that again. We discussed Toe's possible return to school in person (our district has been remote all fall but is looking to return in February). As always, we met with the pulmonologist, the dietician, the respiratory therapist, and the social worker. It was a three hour appointment that involved a blood draw and an ultrasound, but if Toe's health continues we can have our next three month appointment virtually.
 

Yard Work

I decided I wanted to spend part of the Fourth of July working in our back yard. I went out to mow, but the soil was perfect for pulling dandelions. As I pulled, I started contemplating the past month and the kind of America I would like to see. I think recognizing wrongs is a critical step, but it is also critical to envision the world we would like to see. I got caught up in my work and realized that pulling dandelions is actually a good metaphor for the work I am currently doing.

I admit it. My yard is not a traditional lawn. I don't use fertilizer or weed killer. The yard is filled with moss and clover and buttercups and early in the spring I let the dandelions bloom for the bees. I mow as often as I can and as long as it is soft underfoot and not blooming enough to cause allergies, I'm pretty satisfied. But every once in a while, the dandelions take over the yard and it's time to roll up my sleeves.

Saturday, the soil was damp and the dandelions slid from the ground with relatively little effort. The neighborhood was eerily quiet and as I fell into a rhythm, digging and tossing, I began to think. We have had such a strange spring, a perfect storm of events to set us off balance and face uncertainty. It feels like things have turned upside down and we are questioning everything. I see a lot of people angry and hurting and taking their anger out on others. I see just as many people (many of whom are also angry and hurting) working for positive change. Sometimes the two overlap. Humans are messy, emotional creatures, and these are messy, emotional times. I can't control anyone but myself (and MAYBE maybe influence my family and friends). But before I reach out to anyone, even my own son, I need to work on myself.

I began thinking of dandelions as my personal biases. I need to pull them one by one. When the soil is primed, they are easier to pull. Sometimes I can't get the roots. Some patches of the yard have a few, some areas have clusters so huge, it's hard to tell where to pull. The work is dirty and monotonous and sometimes causes blisters or aching joints. I get one area finished and look back and find I have missed a few. I will never get them all. This is ongoing work, needing regular tending.

As I pulled, I found a rock - an old pathway through the middle of the yard that had grown over. I got new tools and pulled the rocks. Under one I found an ant colony and called Jason and Toe out to look at it with me.

Toe said, "You're digging ROCKS?! Can I do that too?"  I was delighted. J wanted to help, too, but injured his back in March and is still recovering. I suggested that he supervise and verbally assist.

The next 30 minutes were so sweet. J guided Toe in finding rocks, digging them up without tearing up the lawn, and then using soil to fill in the holes. It was amazing to listen to the way J broke it down into easy steps and helped Toe plan his actions as well as execute them. Meanwhile, I moved on to a different part of the yard and kept pulling.

Toe and I became tired and sore before the work was done. We'll have to come back to it another day. When I got too tired to pull dandelions any more, I mowed. The yard is patchy now, but the holes will fill in.

Toe's rocks

Post - pull

My haul

I am still contemplating the better world I would like to see. There are so many things in our world that need fixing, it is overwhelming. I think right now it is important to face what is in front of us. I am learning about the Black Lives Matter movement, learning about the Coronavirus as science works desperately to catch up with this fast moving disease. I am learning right now. I am reading and talking to friends who have more experience and/or knowledge than I do and examining my strengths and weaknesses. My goal is to better understand, to be a better ally,  show up and use my strengths to help make this a world where we all have equal opportunities and rights. I am working on my back yard before I move to the public space of my front yard.

This metaphor won't work for everyone. Probably doesn't work for anyone but me. Each person has different strengths, weaknesses, perspectives, and biases. Many people have different yard-care techniques. That's ok. I just thought I'd share mine so you might go take a look at your yard.

Small Ears

Having kids at home means that there are small ears everywhere. They are hearing your discussions and absorbing both things you say and your general mood. If you haven't, check in with your kids. They might be worrying more than you think. At least, that's what happening in our household:

Night before last, as Toe was getting ready for bed, I noticed his hands were red and raw. This is a boy who takes hand washing VERY seriously. He nags me when I don't wash my hands long enough (and I usually remind him that I washed my hands five minutes ago and will do so again in the next five minutes) and is completely outraged by the non-hand washing that regularly happens among his middle school peers. I had him slather up with lotion and go to bed.

And then I woke up in the night with the realization: those red, raw hands mean he is washing even more than normal (which, in our case, is a lot). I then thought about Toe reading over my shoulder that night as I scrolled through Facebook. He has been within earshot as I have discussed the news with J or people on the phone. Like many of you, I've been leaning on the news cycle pretty heavily. I have been reading the news, sharing articles with J, discussing the latest statistics or new information multiple times a day. I have been a little overwhelmed by the numbers, by the changing landscape, but I have been afraid to take a break from the news in fear of missing some crucial piece of information.

Meanwhile, as a family, our self talk has been positive. We remind ourselves that as a family with CF, this is what we do. Toe says, "Social distancing is nothing, I have been isolated in a hospital room for two weeks with a PICC line and a blood clot!" He is chirpy and mostly joyful.

But the more I thought about it in the night, I realized that I am seeing little signs of his anxiety: extra hand washing, surprising grumpy moments, grabbing and hugging me much more than normal... Toe is twelve. I need to remember that although he is very mature, with a wide range of experience, he is still a kid.

So yesterday morning we had a little talk. I asked him how he was REALLY feeling. He said he's scared and missing his friends. I told him that it is ok to be scared, and important to share those feelings (as long as he's not taking it out on others). I told him that keeping these feelings in means that they grow and fester, kind of like leftovers in his lunch box. When he brings home his lunch box after school, and we empty out the food, we see the leftover food and get rid of it. If we don't empty out the lunch box, though, the remaining food inside rots. You still have to deal with it eventually and by then, everything is moldy and rotten and gross. It's important to allow and acknowledge the big emotions we are feeling to let them pass through, rather than build and fester.

I realized this might be good advice for me as well...

I am working to check the news and Facebook less frequently and J and I are sharing information in private moments. I don't want to shelter Toe completely, but he does not need to live the news cycle with me. Toe is home for the foreseeable future and I need to monitor my conversations in his presence, and also find private time to talk freely and experience my own emotions.

CF, COVID 19

With Toe's cystic fibrosis, many of the practices we are being asked to do as a nation for COVID 19 are second nature to our family (and most families with CF). Any illness has the potential to turn into a respiratory exacerbation and potentially pneumonia in my son's lungs. I have seen kids with CF go from being perfectly healthy to life threateningly sick in a matter of days or weeks. This is something CF families live with daily. COVID 19 does the same thing but for different reasons (CF - thick, sticky mucus; COVID 19- damage to the lung lining).

We have lived with uncertainty for 12 years. Plans we make for tomorrow, a week, or a month from now are understood to be tentative. CF reminds me on a regular basis to appreciate the healthy days, to take one day at a time, one decision at a time. We make a good faith effort, wash hands, do treatments, avoid germs, and work to let the rest go. This is an ongoing practice.  If there is one thing I can share with the general population during this time, it is that it's ok to live with uncertainty. Narrow your focus. Appreciate each moment.

The game has not changed for us. However, the stakes are higher. We are taking social distancing very seriously and the likelihood is that once other people return to normal lives, we will remain sequestered. We are following the CF Foundation recommendations and recommendations from our local CF clinic. I'm not really trying to plan more than a few days ahead.

For everyone, please remember the basics:
Regular and thorough hand washing and/or sanitizing - check
Avoiding germs - check
Avoiding people with coughs or other symptoms - check
Coughing into your arm - check
Keep a 6 foot distance from anyone who doesn't live with you-check
Shelter in place if you or portions of the population are sick - check

Some next-level habits we have created that might help:
*Take these with a grain of salt and if authorities recommend otherwise, follow their recommendations.

1.  Wash or hand sanitize during transitions: Getting into your car after the grocery store? Hand sanitize. Walking into the house? Wash your hands. Shifting from computer work to making dinner or a snack? Wash your hands! If you associate hand washing with a trigger (transition) it will be easier to remember to do it. (As a side note, my hands suffer from the tremendous amount of hand washing I do each day. I combat this with a really good hand lotion and sometimes gloves before bedtime. Every night.)
2. Consider changing your clothes after being in public: Even during normal times, Toe changes clothes and/or showers after school EVERY DAY. We have been changing clothes and showering after outings to the grocery store or any place where we encounter people.
3. Sanitize high traffic areas daily: I'm thinking especially of door handles, light switches, computer keyboards, phones and tablets.
4. Change hand towels daily 
5. Try a nasal rinse: We use NeilMed sinus rinse because of our allergies, but I have found that when we started using it, we became sick less often. I think flushing the nasal passages with salt water can't be a bad thing...
6. Quarantine packages and mail - J waits until the next day to empty the mail box and when a package arrives, we put it on the front porch and wash our hands. The package sits for 24 hours before we open it. I know other moms of kids with CF who are wiping down their mail and packages with bleach. We're not there yet, but I understand it. 

These measures may seem extreme, but they have worked for us. We still get sick, but  not as regularly as we did before we instigated these practices.

We are in for a roller coaster ride. All we can do is make a good faith effort and hang on. It took me years to put together these practices. I hope you see something that helps. If you're doing all of this, great job. KEEP IT UP!

Tech Rocks

Toe plays a new game online with friends

As a child of the 80's I can never quite get over my awe of technology today. I am the person who oohs and aahhs every time I see X-Ray results in seconds instead of hours (for those of you young chickens, they used to take X-Rays on FILM and it had to be developed before you could get results).

I feel the same about FaceTime and Skype. I remember seeing an ad (15 years ago?) of a guy taking a meeting from his lounge chair on the beach. I thought this was hilarious. And impossible. And yet here we are. It certainly is making staying at home easier.

Toe has actually used this technology for virtual play dates for years. His cousin in Illinois keeps him company when he is sick or in the hospital. He plays Minecraft with friends during breathing treatments. Because of Toe's CF, we become sequestered a lot. Toe spends hours on FaceTime with his friends on a regular basis. We also have a few play dates, but especially in the winter, FaceTime is  life saver. I am in awe of the technology and SO grateful that we don't have to pay long distance rates to do so (For those of you of a certain age, remember when we made our phone calls on evenings and Sundays and kept things short? So 20th century).

The DM discusses Features and Traits with our team's Monk

Recently we have dabbled in combining more traditional games with our technology. Toe has an ongoing D&D game that he DMs (serves as Dungeon Master) online with my sister and her daughter in Illinois.

Toe has spent his spring break virtually connecting with friends. Besides Minecraft and D&D, some other friends asked Toe to play the board game Cartographers with them. He has spent a couple of hours this afternoon with the friends and their family playing this board game. They have had to be creative about how to see the board or cards or to "switch maps," but overall, the thing has been an amazing success.

I know it's a shock, but he's a storyteller...

I am INCREDIBLY grateful for this technology and for people reaching out to us during these times. The likelihood is that Toe will be home through the end of the school year and these connections mean the world to us.

Recording Attack Initiatives

8 Reasons People Might Be Bulk Shopping for TP / Walking in Someone Else's Shoes

Photo from 2017... Masks are just a part of our life.

Yesterday I had to go to the doctor for a potential sinus/ear infection (it turned out to be a double ear infection). I called ahead and they told me to come in and that when I got to the front door, I should get a mask at the desk and wear a mask in to my appointment. I would be sent directly into a room instead of the general waiting room. My doctor is in the local hospital. I have heard that they are using enormous numbers of masks, so I decided to wear one from home.

Full disclosure: my kid has cystic fibrosis. We keep masks on hand, both kid and adult sizes, at all times. We wear the masks when we fly, when we take Toe to clinic appointments, if he has to go on field trips, and whenever we feel they are necessary. I buy them when we run out, but always keep them on hand. I don't have a huge stockpile.

I put on a mask before I left the house (I might have been contagious. I certainly am coughing) and wore it in to the hospital/doctor's office. I have read on FB comments, especially from nurses, about seeing people around in the grocery store wearing face masks and how they shouldn't be buying masks up when hospitals need them so desperately right now. I kind of felt guilty bringing my own, but I would have felt even more guilty if I had used one of theirs, knowing I had a small stash at home. People certainly gave me strange looks as I drove to the hospital and walked in...

This got me thinking about judgement and compassion. This is a time when it is easy to judge ourselves or others for their actions. Does that person at the grocery store need a mask? (She might be from a single-parent household and have a cold but need groceries). Should that person who is coughing be out on the streets? (The person might be recovering from a cold and taking a walk, working hard to avoid any contact with other people). What about the office worker who might have infected her whole office? (She had no idea and the moment she knew she had been exposed, she self quarantined. She feels terrible but had no idea she could be a carrier). 

And I began thinking about those people buying toilet paper. Maybe they had a reason? I began to think about reasons someone might need to stock up... Ok, the obvious one, fear of the unknown is probably most likely. But here are some other reasons people might have gone crazy for the TP.

1. They are shopping for multiple families
2.  They are shopping for themselves and their neighbors
3. They run a pre-school or are taking care of their friends' kids
4. They were buying for work and for home (there are still workplaces that are open)
5. They have IBS
6. They have 8 (or 10) kids 
7. They have a puppy?
8.  They are concerned there will be a run on Kleenex and are stocking up as a twofer.

Ok, the last two are weak, but you get the idea. There are always going to be some people who act in ignorance, who take this situation too seriously or not seriously enough... I am going to try to cut people (and myself) some slack. I don't know what other people I see on the street are going through. I would like to believe that we are all doing the best we can in these crazy times. I certainly believe in educating yourself and taking this situation seriously, but I am trying to open myself to these times with compassion and understanding. We are a world community and we are all trying to do our part.

That's it for today. Be well. Use common sense. Stay home if you can. THANK YOU  to all of the people still working to help all of the rest of us be able to social distance. EVERYONE, wash your hands.

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