Hospital Stay Day 2 - Long Day, short description

 I forgot the power cord for my computer (J mailed it up to us and it is in transit), so this will have to be short. This was our first full day here and we had many tasks to accomplish. Toe had a PICC line inserted into his arm so he does not have to have an IV in his hand. The PICC is inserted under "moderate sedation" and the line runs from his arm up through a vein close to his heart. That way, when fluids are put in, they are immediately dispersed by the heart. Toe loves the PICC line because it means that he doesn't feel blood draws or other things they have to do to him.

So in preparation for that, we met the anesthesiologist, the child life specialist who distracted him during the procedure, and the sedation team. We also met with the in-hospital school coordinator, our CF social worker, the CF nutritionist, Toe had a session with a teacher, had chest X-rays taken, we had two sets of visitors, and Toe had four breathing treatments. It was crazy.

Cleaning his IV

Toe's godmother came to visit in the early afternoon and stayed through the PICC insertion. She joked that she was keeping me distracted while the child-life specialist distracted Toe. That wasn't far from the truth. BTW, mild sedation means that they can walk and talk but are a little loopy - sort of on the far end of drunk... I have to say, Toe is pretty adorable this way.

Post-procedure. The PICC line area. He FINALLY got to eat.

 Other dear friends came in the evening and brought snacks and smiles just when Toe and I were both wilting a little. More soon!

Another Hosptial Stay

Here we are again!

Toe has been sick on and off since the end of April and the CF team felt it was time for another "clean out." Toe will be doing a 10-14 day course of IV antibiotics. The first week will be here in the hospital and then we will see if we can take him home and continue IV antibiotics there.

Our transition this time has been a little more gentle. Last time, we arrived and in the hour, they were giving Toe a PICC line. Today we checked in, unpacked, met with our Pediatric Pulmonology intern and talked about meds, and took a walk out to the Sky Bridge before our doctor came to  talk to us.

They will be giving Toe the same antibiotics they gave him last hospital stay (Cepepine and TOBI). He will get a regular IV tonight and then have a PICC line inserted tomorrow afternoon (no food after 6am). After that, they'll X-Ray his lungs to make sure the placement is right and to see how his lungs are doing. The doctor says Toe's lungs sound good, but "coarse," which means that he has mucus sort of dangling on the walls of  his lungs. The goal of our stay is to get that mucus moved out.

Toe is acting like a pro. He settled in and is acting like he's perfectly happy. We'll see how it goes when they give him the IV.....

Backyard flowers

Something I love about this property - things bloom on their own. Various owners and renters along the way have landscaped this yard with so many different kinds of flowers: wisteria, a snowball bush, ajuga, periwinkle, fruit trees, a lilac. They bloom in the front and back yard. They bloom in succession. I could not have asked for anything better, especially with my allergies. They bloom, I am able to enjoy them, I don't have to bring them into the house.

Our lilac tree has root rot and will have to go. This is likely its last year. As it is, a rope is currently holding in place. I do love it, though. I love its flowers, its presence right outside our dining room window. It is hard to let go enough to bring it down...

Although right now, the purples are in, we have pinks, whites, blues.... Photos just can't do it justice, but I will continue to try. 

April Blur

At Miss Jen's Birthday

The month started with so much promise. At the end of March, Toe was healthy. We had a great Cub Scout pack meeting where all of the boys built things with boxes (almost all of them opted to make Minecraft items). We went to our friend Jen's birthday party in Portland and stayed overnight. We had a great spring to look forward to.

Cubstruction - what would you make with a box?

We were out walking on a regular basis, enjoying the weather when it was nice.

We had a lovely Easter. A few days before,we went to my mother's and she and Toe made Easter Bunny cookies together.

Toe's class studied eggs in March. They learned about the different kinds of animals that lay eggs, the parts of an egg, they incubated chicks in the classroom. I brought Pysanky materials (Ukrainian decorated eggs) to show Toe's class how I make them. Toe and I spent all day Saturday before Easter making Pysanky with Miss Lori and Miss M. Toe made a dragon egg for his father that was really beautiful. Last year I had to monitor him every second when we did Pysanky. This year, he did the whole process safely on his own.

Easter morning, the egg hunt took us around inside the house and in the back yard. It was a beautiful morning. We had a relaxed day and Lori and Miss M came back for Easter dinner (made by Uncle Awesome). It was a great day.

And that's about the last I remember from April. Toe got a cough right before our quarterly Doernbecher visit but still managed to blow 116%on his PFTs. We started doing three breathing treatments a day to help keep Toe's mucus flowing while he fought whatever virus he had. Three breathing treatments a day with school makes very little time for anything else. It's a beautiful day, want to play in the back yard? Sorry, we have to do breathing treatment. Cub scouts? Sorry. Breathing treatment.

Toe was just starting to kick the cough and I had purchased tickets to go see the Harlem Dance Theater (probably the only time they'll ever play in our area) when the Saturday of the show, Toe came down with something else and I had to call the box office and beg them to resell our tickets.  By Tuesday, I had caught it too and it was terrible. Body aches, congestion, coughing, sore throat, fever, the works. After a week, we called the CF clinic and they put Toe on antibiotics (he had been doing three breathing treatments a day for three weeks by then). It has now been two weeks since I caught it and I am still not feeling better. I finally went to the doctor today and I, too, am on antibiotics.

Meanwhile, Uncle Awesome has been tending the yard (which has needed mowing at least twice), fed us, done grocery runs, and been there for just about everything. J managed to go to the CF Foundation Great Strides fundraising walk before he succumbed to this nasty virus as well. He has continued to work, support us as much as he can, and deal with the myriad of ideas that are coming to him for a creative project he has in the works (with a cold).

And now it's May. Not the beginning of May, but the middle of May and we're looking down the barrel at our last pack meeting of the year, June, and THE END OF FIRST GRADE. I'll be very sad about that. I adore Toe's teacher (he does too). It seems like yesterday we were facing the hospital and head lice.

Frankly, I've been feeling a little discouraged. It is difficult to find any kind of normalcy when you and your family are home sick. We have a routine that centers around Toe's feeding and breathing treatments, but there is not much room for anything else.The house is  pit. I have hardly had the energy to get up and shower, let alone tidy up, play with Toe, exercise, or leave the house. Poor Toe is desperate for someone to play with, and I have been lying on the couch, hoping to turn invisible. Excitement is a little beyond my reach right now. We've been doing this illness dance for such a  long time, it feels like we are going to be sick forever.

On the bright side, I have been able to read a lot of books. We also have really appreciated the bird feeder we purchased right before we became really ill. It has brought many small birds into the yard to keep us distracted. I have also really learned to appreciate my hearing and sense of smell (both of which I have lost for the greater part of two weeks).

Our back yard wisteria

Chinese Gardens

My dad's cousin Len (the 83 year old yoga instructor) has been having some difficulties with her neighbors over a 40+ year old laurel hedge (they cut it down without notifying her, damaging her fence in the process, and although it was on their side of the fence, it was on her property). As her back yard and garden have been a private oasis for her for more than thirty years, she is understandably upset. Negotiations are moving exceedingly slowly so one day last month, when the neighbors were out working on the stumps, Len was feeling particularly frustrated. I drove to Portland and we decided to go to the Chinese Gardens downtown.

I had been to the Japanese Gardens up in the west hills, but had never even heard of the Chinese Gardens. They are located in Chinatown and are pretty nondescript from the outside, but are pretty spectacular inside. They have packed a lot into one city block and somehow managed to give it a sense of openness and serenity that was just what we both needed.

Len said she prefers it to the Japanese gardens because she does not have to walk as much. She is very athletic and strong but has very worn out knees.

I loved the detail on the tiles here.

When we parked the car on the back side of the gate, the whole place seemed like another downtown structure, but once we entered, I was carried away. It wasn't until we reached this vantage point that I remembered that we were, indeed, downtown among the regular bustle of city life.

Everywhere things were starting to bloom. It was a perfect time to see so many blossoms and new growth.

We went back to Len's house and had a wonderful dinner and conversation. A great day for me to spend as a regular adult (rather than a mom-unit) and hopefully distract Len from her dispute for a short time.

Lost camera

A post-Thanksgiving party with Nance.

We use Toe's camera sparingly, so when I finally take the time to download the photos, I am often surprised by the content. This time, we lost the camera the afternoon of Toe's birthday among birthday gifts and wrapping paper. It resurfaced magically a month later. It's a little like finding a time capsule (or the days where you'd find a random roll of film and take it in for development).

Look at that hair! This was pre- head shave.

Wait, Mom, I really can get into the shower with my clothes on? COOL!

The birthday cake Toe made with his Grandma (Rosemary) with the re-lighting candles

The inside was glorious!

Camping-ish

It's not quite "glamping." We brought sleeping bags and had to walk more than a city block to bathrooms. HOWEVER, it was not really camping either. We had a roof, mattresses, and a space heater. There was electricity in our room. And for now, electricity is the deal breaker.

 We took Toe camping for the very first time a few weeks ago. It was a trial run. With his CF, bacteria in public bathrooms is a concern. The smoke from a campfire is a concern. We need electricity for breathing treatments (hypothetically we could do them in the car, but still... electricity is preferred). We had the opportunity to try at the local KOA. The Cub Scouts held their district pinewood derby in the Game Center there and Scouting families were invited to stay Friday and Saturday nights. We opted to go just for Saturday as I did not know how it would go with Toe's health. He has had a rocky winter/spring since January. His lungs are great, but he just finishes one virus when he catches another. He has mostly had low energy and run fevers high enough that I have had to keep him home from school. He was sick the week prior; I wasn't even sure if he would be healthy enough to go. 

There were many advantages to this experience. The greatest was that the campground was a fifteen minute drive from our house: we could drive home easily if things went badly. Instead, we had a perfect weekend.

Toe and I got there on Saturday and spent the afternoon walking around the grounds. Toe jumped on the giant jumping pillow. We played chess outside with oversized (three foot) pieces. We played ping pong. We shot hoops. We went to the camp store and got flashlights, wood for a fire, and marshmallows. On the way back to our cabin, when I told Toe it was time for dinner, he did not want to stop. He said in frustration, "It's just like you poured awesome all over my pancakes and then ate them yourself!"

Another Scout family from our den stayed next door, so while the boys played, the dad (an eagle scout) gave me a refresher on making teepee-style fires. We roasted hot dogs and marshmallows. By the time J arrived straight from work, the other family had gone to bed and Toe and I were reading Harry Potter aloud by the campfire.We did breathing treatment and Toe read by flashlight in his sleeping bag on the top bunk before falling asleep.

J had the next day off and Monday was a teacher work day (no school for Toe). We decided that we should stay another night. When we told Toe the next morning, he was elated. The weather was stunning. Toe did breathing treatment on the front porch while J read to him. Toe had opted to leave all tech at home, so instead of ipods or PSPs, we just read and enjoyed the sunshine.

I left the boys to play and drove home. Ok, here's the advantage to camping fifteen minutes from home: I was able to sterilize nebulizers in my own kitchen, pick up more medicine, check my email, and take a shower before I went back to the camp site. I found the boys playing ping pong.

We decided to search for the "Nature Trail" on the edge of the property. After a detour for playground time, we found a raised pathway through a wetlands. J and I were taken back to the days when we would regularly hike together. Toe loved the pathways.

We saw a beaver dam, a tree frog, coyote scat,  and a herd of elk as we squished along platforms above thin layers of mud.

I made the fire for dinner and we roasted hot dogs and ate freeze dried meals J and I had purchased for a backpacking trip ten years ago (still good!). J and I made the meal and tended the fire without really discussing what we were doing, just flowing between tasks comfortably.

The thing was, we have to pack so much to travel anywhere and do so many breathing treatments, that the additional work for camping did not seem difficult. I felt relaxed and happy the entire two days.

Each experience was  delightful surprise for Toe. He was shocked a sleeping bag could fit in a stuff sack. It looked like a magic trick. He loved cooking hot dogs over the fire. He was shocked that the powdery stuff in those foil bags could actually turn into food. It was a weekend of discovery and delight.

And we were still able to do Toe's breathing treatments as usual.

Sunday night, after we had extinguished our fire and had gone inside to do breathing treatment, we heard raindrops on the roof. Our space heater had warmed the room and we sat there, cozy and warm, reading together. It was only a couple of nights, but we all felt pretty spectacular for days afterwards.