Happier Sinuses

This was Toe's first surgery since he was a baby. He had PICC lines put in each time he was admitted to the hospital for an exacerbation, but those were put in while he was awake (although highly sedated). This was the full enchilada.  He was anesthetized. He had a three hour surgery. The surgeon cleared out all of his sinuses. When she came to speak with us after the surgery, she said that his sinuses had been "really bad." Apparently they were inflamed, with many polyps. It was a major job to take care of everything. The ear, nose, and throat surgeon (ENT) likened the surgery to Ms. Pac Man. At the time, I thought she meant the tool she used took tiny bits off polyps like a chomping machine, but now I know it ALSO meant that she was going through maze-like cavities, removing junk.

The surgery afforded us the opportunity to have samples taken from his sinuses and his esophagus so that the CF team can see what bacteria are growing in there and compare that to the regular throat cultures they take. This helps them prescribe antibiotics specifically targeted for the bacteria growing in his body when he needs antibiotics.

Toe went to sleep enthusiastic for the surgery and woke up groggy but amiable, immediately asking to continue the "chat pack" question game we were playing while waiting for the surgery to start. We had to wait a couple of hours until a room was ready for us in the hospital (we stayed overnight) and around 6:30pm we finally moved. Toe, understandably, was very hungry. He ordered steelhead and roasted potatoes for dinner and ate it all, licking the plate. He said he wanted to eat the same thing all day the next day. The first thing he said the next morning was, "FISH." He had to settle with pancakes for breakfast, but we managed fish for lunch and dinner (thanks to my mom who made her special "salmon packets" for us to roast at home).

Yummy steelhead and roast potatoes

Waiting to go home

We're on round-the-clock pain meds for the next few days, so we have had interrupted sleep... Sometimes needing snacks in the middle of the night as well. We arrived home to a sick dog (we had a fantastic sitter staying with her... Sasha is just an old dog) and have been dealing with getting her to the vet for assessment just in case.

Toe is in good spirits. He is a little grumpy that his sinuses are inflamed (from the surgery), but understands he will feel better each day. He is taking meds and doing nasal rinses like a champ. The ENT had said, "Those CF kiddos are so tough, they seem to manage pretty well after surgery." I'm inclined to agree, at least about this one.

Toe has regained his sense of smell (lost gradually due to the stuffed sinuses) and is having some drainage. This mostly manifests as stuffiness and sniffing. He has energy in the morning, but wilts over time. I wish I could get him to nap, but I think that's unlikely. He mostly seems like he does after a long day of school. Certainly his sense of humor is intact.

J and I are feeling a little ragged around the edges. We took shifts for the round-the-clock meds last night, and that helped. J has gone to help with a necropsy today on a beached sea lion (yes- you never truly leave the aquarium) and Toe and I are home, waiting to pick Sasha up from the vet. Medical equipment is unpacked, laundry is in the wash, nebulizers are boiled, a schedule is set up to accommodate the new meds Toe needs for the time being (in addition to the regular CF ones).

Upcoming Surgery

One of the most frustrating things about CF is that it is progressive. In this instance, "progressive" has a few meanings. First, progressive means that Toby's condition will worsen as he gets older. Second, and the one we have had to deal with more in Toe's life, is there are always new issues cropping up. You get used to the idea that your child has CF and that your newborn needs pancreatic enzymes to digest and then the lungs get an infection and you have to start doing antibiotics and respiratory therapy. You get used to respiratory therapy with Pulmozyme and the cough is not great, so you add saline. There's always something. As a CF parent, you know that scary conditions like CF diabetes, bad bacteria in the lungs, failing internal organs, or nasal polyps are all potentials on the horizon, but you learn not to stress about them too much, because you never know what's next on the docket and the one that's NEXT is the one to deal with. Very few things become "cured" forever. It's something else to add to the daily maintenance.

I'll give a full health update soon. What's NEXT for Toe is surgery for nasal polyps. What are nasal polyps, you might ask? I am SO glad you did! We had this explained to us yesterday at the Ear Nose and Throat Specialist.

Children with CF build up mucus in their sinuses as well as in the lungs. Even with regular saline rinses and other preventatives, sometimes the sinuses become so inflamed, that the inflamed tissue pushes into the nasal passages, between the natural ridges that exist there, forming polyps. As I imagine it, it's a little like sinus hernias...Over time, these polyps grow and eventually block the nasal passage. There are some things to do to slow the progression of polyp growth (we have been doing them), but once they are blocking the nasal passageway, surgery is the only option.

Toe has had polyps for about a year, and the doctors have been watching their growth. The last two months, the polyps have become a problem. Toe has been going through BOXES of tissue, trying to clear his nose. He has lost his sense of smell and can barely breathe through his nose. At our CF appointment mid-month, the doctor said, "WOW! Yeah! The polyp in his left nostril is HUGE," and referred us to a pediatric otolaryngologist (ear, nose, and throat doctor - ENT).

Toe has large polyps in both nostrils. They interfere with his sleep. They are driving him so crazy that he said, "Mom, all I want for my birthday is to get in to see the ENT doctor sooner than the 13th." We were able to get in on a cancellation and met the ENT yesterday. Surgery is imminent, but like all things CF, it is slightly complicated with many moving parts.

I'm supposed to call the scheduler on Monday who will talk to me about possible surgery dates. My understanding is that it can take insurance up to two weeks to approve the procedure. I'm not sure if we can set a date for two weeks out and cancel if the insurance doesn't go through, or if we have to wait until the insurance approves the surgery to schedule it. After that, Toe's situation is serious enough, that the doctor made a note about urgency to the scheduler, but she has no idea about her availability.

Once we set a date for the surgery (which could be in two weeks or not), we contact the CF clinic and set an appointment for a week BEFORE the surgery when we go to the CF clinic and they examine his LUNGS. The CF team wants Toe's lungs to be in fantastic shape before the surgery, so at that appointment, a week before his surgery, we will find out if Toe needs a hospital admission to give him IV antibiotics to "clean out" his lungs. This could be a week, a couple of days, or no IV antibiotics at all.

Then there's the surgery, which is an outpatient procedure. We have been told that there are 1-2 days of "drainage" and then Toe can resume school in 3-5 days.

So, the whole process could involve a few days' stay at the hospital before Toe's surgery, or not, and will happen sometime soon, maybe in February or March... Toe could miss a week a week of school or two, depending. In the meantime, we have to keep him healthy BEFORE the week before the surgery. During flu season.

Toe has been a champ. He is mostly excited for the surgery because he is so uncomfortable, although last night at dinner, as we were going over details, he had a moment of sadness, where he welled up and then said, "No. I can't cry. That will just make more mucus and I'll have to blow my nose more." We had a good laugh and moved on.

We have been told that polyps are an issue for about 35% of the CF population at our clinic. My understanding is that if you grow them, it will be a lifelong issue. We'll do saline rinses and Flo-Nase as preventatives, but the polyps will likely grow back. Some kids need surgery every few years, a few need it every year. As with all things CF, we will do due diligence and face the next thing when it comes.

Right now, to deal with the uncertainty, we're breaking it down and taking things in steps. Yesterday, we had our consult, followed by a CT scan of Toe's head, so the EMT could use it as a map as she shaves away tissue in Toe's nasal passages. Toe has been prescribed Prednisone (a steroid) to try to reduce some inflammation to make the situation more bearable in the meantime.

Today: Try out Prednisone to see if the steroid is ok, or if it makes Toe so wild/wired/amped that it's not a good idea to give it to him at school.
Sunday: WAIT. Follow all other maintenance routines.
Monday: Call scheduler and sweet talk and beg for a surgery date.
Then????  We should know more on Monday. Two days ago I was saying "We should know more on Friday," and we do. Sort of.

Toe had a great time with the CT scan. He said it was a little like the Star Tours ride at Disneyland. He also said last night, "I might have to fake nasal polyps, because I could ride that CT scan again nine times!" As you can see, his nose might be blocked, but his sense of humor is not.

I'll post more as I know more.

Toe's first "ride" on the CT scan.

Texas Adventures with Gus and Boat

 

As the dark winter days drag on and the rain continues, I long for warmer weather and warm water. Last summer after our road trip with Dama, we flew to southern Texas to spend time with J's folks. Grandma Gus and Grandpa Boat live along the canals within a mile of the beach and in July, the water is the perfect bathtub temperature.

We preceded the hurricane that hit their area by less than a month! When the hurricane did hit, the grandparents had to evacuate; they returned home to external damage on their house but felt incredibly lucky about the state of their property.

Rewind to the end of July. Temperature in the high 90's. Warm ocean winds. Amazing cloud formations.

Our Pacific Northwest kid is pretty sensitive to the heat, but the grandparents are very generous with the A/C and Toe acclimates during the course of the visit. We stay inside during the heat of the day and venture out in late afternoons to enjoy the balmy weather.

This visit we took a quick day trip north to meet up with a friend of mine from college. I haven't seen him since 1995! It was wonderful to meet his wife and daughters and experience the local zoo (and eating chips made with cricket meal!).

 We spent the rest of the visit with the grandparents enjoying a completely different coastal experience than the one we get in the Pacific Northwest. Water temperatures where we live reach a balmy 65 degrees. If you play in the water too long, you turn blue. In Texas, the water is a full-body experience. You still have to worry about rip currents in certain places and at certain times, but there are places where you can wade waist deep and just enjoy the water. THIS is my favorite place to be in Texas.

"How did we end up holding all of the toys while the kid just floats?"

We didn't just spend time at the beach, though. We went to visit the Texas State Aquarium to view their giant new exhibit. I was amazed by the minimal barriers and how close we could get to the animals. The sloth on exhibit actually reached out for Grandpa Boat!

Toe and Gus examine flamingos

Touch Tank

You can't do this in the surf where we live!

We also got to go to Toe's first minor league baseball game. It was pretty hot, even in the shade, but Toe LOVED it.

Toe also discovered this visit that he LOVES Texas brisket!

Besides the beach, we went to a local bay. The water was calm and about two feet deep for hundreds of yards. Toe planted himself in the water and sang to some snails.

Gus and Boat rented a couple of paddle boards while we were there and we all took turns trying to learn this new skill. The smaller paddle board (actually a surfboard) did not do well with adult people and we were dunked so many times, it was pretty funny. Toe enjoyed the compact nature of the smaller board, though, and became pretty good at it. We all reached varying degrees of proficiency. Gus and Boat even managed to take their small dog, Grinch, who loves riding in kayaks, along with them. J managed another passenger.

 These were just a few highlights...So many adventures in two weeks! Memories of warm summer days carry me through twilight afternoons here.

Dama and the Redwoods Part 1

Last spring my mom decided that she really wanted to show Toe the California Redwoods. She was able to get away for three nights and four days, and began planning an ambitious and rigorous road trip. When we found out that my sister's family planned to go to California to visit her husband's family, we decided to work out schedules and meet up with them, so "Dama" could take all three of her grandchildren through the Redwoods. We spent an average of 8-10 hours in the car each day for four days. The kids were fantastic, my brother-in-law was a sport (listening to us singing camp songs for hours) and my mother was a HORSE, choosing to do the entire drive herself.

Here are some highlights:
Day 1:  The Drive South
Toe's first visits to Ashland and the Oregon Shakespeare Festival. We spent almost every vacation of my childhood at the Shakespeare Festival and many in my adulthood. J and I haven't been in about fifteen years... I was pretty overwhelmed taking Toe into the open Elizabethan theatre. Toe said, "They put shows on HERE? That would be so bright and HOT!"

"Alas, poor Yorick!" Toe read synopses of Shakespeare plays on the way down...

The day we were there, it was 100 degrees and my poor coastal boy wilted pretty quickly. A quick trip to the playground and a dip in the creek in Lithia Park revived him enough to get in the car and keep going.

A truck of every color!

Day 2:  Connections

We continued south to meet up with my sister's family at the San Francisco airport where they returned their rental car.

You don't see these every day!

We met up, shoehorned four more people and their luggage in (and on top of) Mom's van and headed north to visit Mom's cousins.

Cousins reunited!

First time for the kids on the Golden Gate Bridge. Typical SF weather.

We had a great view of Toe's Grandpa Boat's old Coast Guard station

At Mom's cousin's house, we picked mulberries, played games, and had a wonderful dinner before driving another hour to our hotel.

Dama and the Redwoods Part 2

Day 3: The Redwoods

Day 3 was the day Mom had scheduled for the most experiences and fewest hours of driving. I think we still were in the car about 7-8 hours. The day started with a detour to the coast to see one of many "glass beaches." It may look similar to north Oregon beaches in the photos, but the sand was SO different!

Next, we drove to the Chandelier Tree and spent some time doing photos and exploring.

Mom's van wouldn't fit through with the luggage on top!

We continued up the coast to the Oregon border, taking time to stop to "hug a tree" and see Avenue of the Giants. By evening, conversations were happening like this:
"Hey Toe! Look at THAT giant tree!"
"Mom, they're all giant trees."

Day 4: We're On Our Way Home
The last day, we visited a National Park visitor center and drove straight home. It was a long four days but so worth it. We all were pretty exhausted by the time we reached our beach. My sister's family was able to stay a few more days and we took advantage of the time to enjoy time together, having bonfires and family time.

Birthday Boy

 Toe turned ten this week. He has lived a DECADE. When Toe was a month old, my mother found a bicycle at a garage sale and bought it for him. At that point, the thought of living with Toe's cystic fibrosis was so difficult for me that I told Mom I didn't want to see the bike. I couldn't. It caused me so much anxiety, she had to hide it on her front porch. Toe was so little and fragile, I was terrified that he would never grow old  enough to learn to ride.

It turns out that the kid's a fighter. He has amazing resilience, and when he gets the right medications, his body responds really well. Although he has a chronic illness, he spends most of his time as a healthy, thriving child. We have been incredibly lucky.

The bike Mom bought has now been ridden and outgrown. Toe long ago shed training wheels and finally, LAST WEEK, mastered the subtle art of starting himself, rather than needing a push each time. We have actually been on a couple of family bike rides and are now anticipating the adventures we can have.

Toe's health could turn with any cold, and during flu season we do due diligence to keep him healthy: flu shot, hand washing, shower after school, avoiding large crowds... but it has become simply part of our routine.

We have all grown in the last ten years. J and I have a greater understanding of Toe's illness and what we need to do to provide him the best opportunity for health and growth. We also know that all of the maintenance and prevention we do might not keep him from getting sick. I am learning to let go of that feeling that the "other shoe is going to drop" and enjoy the present moment. There are challenges ahead. Some, including a surgery for nasal polyps, are on the near horizon. Others, like puberty, high school, and college, are out there waiting. I don't dwell on them. I can't predict where we will be with Toe's health when we get there. But they don't make me freeze the way they once did. This acceptance is an ongoing process. It is easier when he is healthy than when we face long stretches of illness or admission to the hospital; but each day we are learning how to navigate this highly unstable lifestyle and to enjoy the present moment. And truthfully, there are SO MANY joys.

The candles to share with the Texas Grandparents on an improvised "cake"

SO. The tenth birthday. Toe went to school. He arrived home to streamers and balloons. He shared "blowing out the candles" with his Texas grandparents via FaceTime (see our impromptu cake above - the real one was in the oven), called his cousin, and later spoke with his Uncle Awesome who called from the jungles of Peru. One of my dear friends stopped by to bring Toe a watermelon (the key to his heart) and huge hugs. We pulled a gallon of freshly squeezed apple cider (from our backyard apple trees) from the freezer (J and Toe went to a cider pressing with friends in October) and I managed to sort of decorate a cake (a huge feat for me! The whole thing looked like the "crumb layer" for a while).

The inside of the cake.Yes, that much food coloring IS frightening.

A Minecraft Creeper. Or a frog. Your choice.

Toe had his very first sleepover. His best friend arrived in time for dinner (brisket from Texas from the Texas grandparents and "the fixin's" - potatoes, corn, slaw, white bread...). Toe's friend is sweet and easy-going and the boys played really well together all evening. They stayed up VERY late, but were respectful and did not get cranky with each other, although Friend kiddo was tired and Toe was wired and pacing. They woke up early enough in the morning to play for a few hours before Friend's dad picked him up. An hour after Friend left, my mom and step-dad arrived to share a little time with the birthday boy.

The days were kind of magical. J and I were kind of excited to face a new challenge (a kid sleepover!) that did not have a medical bent. Toe was able to be a regular kid enjoying his birthday (albeit, one who does breathing treatments and takes pills...). Friend kiddo completely went with the flow, keeping Toe company during breathing treatment and washing his hands regularly. Toe floated blissfully through the days.

THIS! IS! SPARTA! XD -Toe

Ten. I am thrilled. This experience with this boy is a beautiful one. It is sometimes hard, sometimes frustrating, sometimes scary, but those hard times make the joyful ones that much more precious.

Eclipse - a few percentage points makes a difference

We thought that 98.6 percent totality would be enough for us. The eclipse seemed like a lot of hoopla with the possibility of horrific traffic there and back. We knew in our cloudy part of the world, the chances of seeing anything were slim, but we weren't worried. It all seemed like a crazy fad.

 A dear friend of ours remembered the one from 1979 and has been waiting most of her life for another chance to see a solar eclipse. She planned to drive to Corvallis for the event and bought enough special glasses for all of us. Her enthusiasm sparked our interest, and we did some quick research and educating just in case we MIGHT get a chance to see it.

Nature was on our side. The clouds cleared early and we watched as the moon slowly covered the sun's light. Toe's first comment was, "It looks like a cookie with a bite taken out!"

We had tried to make a pinhole viewing device as well, but it never worked for us (my sister, following the same instructions, made a magnificent device that showed the eclipse, even over Face Time). We experienced the drop in temperature, the crazy onset of crickets, the eerie half-light, but we did not see any stars or solar flares. Our old dog Sasha stayed in the back yard with us but was restless the whole time. Jason was particularly moved and said that he could see the attraction of seeking the path of totality.

Toe and I actually watched the event twice - once in our back yard and once on Face Time with my sister and her younger daughter. It was fascinating to see how they experienced it - the similarities and differences of being half-way across the country, but also near (but not in) the path of totality.

My poor mother, a few miles southwest of us, experienced mostly fog. Apparently, it was a sunny day until the eclipse started and then the fog rolled in and stayed until the eclipse finished. All I can figure is that the heat of the sun was burning off the morning fog and without the sun's heat, it rolled in as it often does. 
 
After conferring with friends, we have determined that those two percentage points make ALL the difference. What we experienced was cool; what they experienced was a connection with the galaxy. Perhaps next time it comes around, we'll have to track it down.

The trees in our yard did a better job than my home-made pinhole viewing device.

Added photo: the yard debris from a major laurel hedge and spruce trim