Montage

I feel we have been living in a montage for the past few weeks. It's not just remembering it as a series of snippets like you would see in a movie to show time passing and people doing things. It has felt that way to live it.

Here's how our montage has looked:
A shot of B discovering some "nymphs" in her hair (just-hatched head lice) and thinks they are nits. Clips of us stripping the beds, vacuuming the couch, the rugs, the carpets. A quick visit with friends outside the house. Shots of B doing laundry. J and Toe rushing to get ready for school. B combs Toe's hair and finds "nits" (really nymphs). B talking to everyone she knows ONLY about head lice. J and B working at their respective jobs. Breathing treatments. Cub scouts. Toe getting a cough. The family stripping the beds again.  B and J throwing pillows in the garbage. More vacuuming. J in the basement sending out HuMn wallets.  Breathing treatments. More laundry shots. B researching late at night about head lice and discovering about nymphs. The whole family doing NIX treatment. More bed stripping. More laundry. Beautiful sunny weather but B is vacuuming.

I have had some stalwart friends supporting me through this, but it has still been mostly a blur. A list of things that must be done yesterday.

The Texas grandparents arrived this week and broke us out of the montage. It has been great to see them. We have continued with laundry, vacuuming, lice combs, a second NIX treatment, etc., but there have been some good adventures with them. Toe had a birthday - a low-key affair with the grandparents and his best friend's family. We had the Cub Scout Pinewood Derby. There will be photos when I can get them on the computer.

Uncle Awesome asked me a few days ago how I was doing. I told him, "B has checked out. There is no one home. This is the body on autopilot."

Toe came home from school sick today. I'm not seeing any specific symptoms (fever, vomiting, rash), but he came right home, had a melt down, and took a two hour nap. That's usually a sign there's something wrong. The grandparents have gone to Tacoma for a few days. They return tomorrow to spend time with us over the weekend. J's birthday is coming up. We just stripped the beds AGAIN (precautionary this time) so there is a nice, big pile of laundry to keep me busy. AAANND it's time for breathing treatment again.

I feel so glamorous.

Re-entry

During a CF Parent Support Group meeting a couple of years ago, we had a great discussion about hospital stays. The discussion was incredibly useful and prepared me in so many ways for our hospital stay this year. I remember one parent saying, "The hospital stay itself is actually kind of nice, it's the re-entry into real life that is hard." She went on to explain that you step out of real life for a week or two and your focus is very narrow. When you get home, you must adapt to the broad array of life's chores and tasks: work, housework, bills, broken hot water heaters.

Over the course of two weeks, Toe became very used to having the full attention of two adults in the same room with him twenty-four hours a day. Since we have been home, it is a constant barrage of "Mom, play with me. Mom, look at this! Mom, play with me. Mom...!"  This is a struggle with an only child in the best of times.

Where are we, having been back a week? On the upswing. I'll be honest. This week was hard. We ran on adrenaline the first few days and hit a wall over the weekend. Sunday night, when Toe started running a fever, I started to panic. Toe had a rough night - tossed and turned. So did I - with worry. Was he getting sick again? How could he be sick, when we had just returned from the hospital and hadn't gone anywhere? What was I doing wrong?

The kid is fine. We kept him home two days. He needed a little more recovery time. He is still pale and tires easily. He does ok in school, but has melt downs when he gets home. He is facing each day with as much as he can muster (and for the general public, he looks like a complete bundle of positive energy).

J and I are exhausted. Monday and Tuesday I was afraid my anxiety/depression had been activated enough that I would go over the cliff into full depression mode. I shut down. Toe and I stayed in bed until noon on both Monday and Tuesday. I have felt better the past two days and think I'm on the mend, but it will take time.

Meanwhile, J and I have both gone back to work and Toe has gone back to school. I am working slowly to unpack from the hospital and find places for Toe's Christmas haul.

HOME

 Toe scraped by with his PFTs yesterday. They were right on the border of prescribing Prednisone, but decided to send us home and see how things settle out. We packed up, had the PICC removed from Toe's arm, did a final breathing treatment and headed home. It was a spectacularly beautiful PNW day and I was able to doze on the ride home.

Only a few things to take home....

When we arrived at the house, Uncle Awesome asked us to show him where the pilot light for the hot water heater was - he thought maybe it  had gone out. Unfortunately, the hot water heater is electric. Upon examination, a leaky pipe had dripped water into the electrical panel and caused a short - enough to pop the fuse and leave a burning smell in the basement. J was just glad that the whole house didn't burn down. We have insurance and have been told we should have hot water in the next few days.

But last night, we had just gotten home from the hospital and all needed to wash off the hospital germs. We called our friends M&R and asked if we could crash their New Years' Eve plans to shower at their house. They welcomed us and fed me an egg nog White Russian, after which, I felt much better. After a meal and showers we all felt warm and cozy and came home to do breathing treatment and go to bed. We were all asleep well before midnight.

I must say, the best Christmas gift I received this year was from Uncle Awesome. While we were in the hospital, he did our piles of head-lice laundry, cleaned the bathrooms and kitchen, vacuumed, mopped, and rearranged so that when we walked into the house, it smelled so clean. Each new room I went into was clean. Of course, we dumped all of our bags everywhere and it will take time to re-assimilate... 

This morning, Toe's Nana and Papa came and posted  signs and balloons in our yard as a welcome home (they thought we were coming home today). We were so happy to see them!

My mom, in infinite kindness, has taken most of our hospital laundry to do at her house (while we wait for the hot water repairman). J has gone back to work. Toe and I have taken the day slowly and gently. The kid is a ball of energy. As he jumps and runs and crawls around the house, I'm glad we did the PICC line at the hospital rather than at home.

We are SO grateful to all of the people who visited us during our hospital stay, who played with our kid, brought us food and entertainment, gave great support and hugs. We are also grateful  to those people who came down with colds or coughs who stayed away and allowed us to stay healthy during our two week adventure. And we are grateful for everyone who followed our journey and provided support and kind thoughts via Facebook, email, or phone. We were well cared for and we feel very loved.