Hospital Stay: Day 7

We had many visitors today (as well as four breathing treatments, IV treatments every 6 hours, and an hour of school)! Toby's grandparents- Nana and Papa - were first. We took them on a tour of the hospital grounds and had a really nice visit.

Then, my friend AL arrived with lime-coconut quinoa cake. She and I took a walk while Toe played Bananagrams with a volunteer (guess who won? He used the words "vexation" "misshapen" and "bawdy." He goes for speed and quality).

Next came Hope, one of the therapy dogs. She couldn't come into the room because Toe is in isolation, but she stood in the doorway and did tricks and then the Child Life person gave Toe a Hope stuffed dog. That was the moment in the day when I almost lost it. Toe found the experience moving, as well. He has been holding the dog most of the evening.

Soon after Hope left, Uncle Awesome arrived. I left Scott and Toe for a couple of hours to check in to a local Ronald MacDonald house - we were given a room so that J can be closer and work and I have a place to go for respite. While I was gone, J arrived and Toe, J, and Uncle Awesome played together.

Also today, we had a visit from a doctor of hematology. Toe's arm still hurts (remember the superficial blood clot? Toe calls it the superfluous blood clot) - maybe worse than yesterday. They added Ibuprofen and suggested more heat and to be gentle with it for a few days.

I am now working to get J up to speed on the routine (the one I cling to desperately to survive and to keep Toby's mood even) and its quirks.

Tomorrow morning Toe has PFTs. That should help determine how long we will be here. Stay tuned and keep your fingers crossed!

Hospital Stay: Day 6

I keep meaning to write that Toe is missing his friends. He has some really good buddies in middle school and he misses seeing them every day. I mean, he LOVES hanging out with his mother, but somehow, I don't laugh hard enough at his body/bawdy/fart jokes. I also don't talk about the right things. To compensate, we have watched The Captain Underpants movie three times in forty eight hours. J&A, F, and E: we miss you! Thank goodness we have been able to FaceTime with cousin G!

Today was a big, busy Monday. Toe's arm has been hurting him (you can see him favoring it like a broken wing in every photo) and last night it started giving him some sharp pain. They changed his PICC dressing and did an ultrasound on his arm/ PICC line today and discovered that he has a superficial blood clot in the line. To save you the suspense, I will say that there is nothing to worry about, it is not dangerous. It just hurts. We are treating it with heat packs and Tylenol as needed and he is encouraged to continue moving around as normal.

Creating D&D characters (in anticipation of a campaign with Uncle Greg).

 Here was our schedule today:
8am-IV infusion (30min)
8am - Respiratory therapy (30 min)
9:30 Breakfast
9:50 PICC dressing change
10am meet with medical team to discuss arm
10:15 School (1.25 hour)
11:45 Grandma Pam arrives
12:20 Saline nasal rinse
12:25 Respiratory therapy (30 minutes)
12:40 visit from a clinical researcher we know who told us the triple combination therapy was approved for people 12 and over!
1:00 Ultrasound
1:15 One of the school teachers stopped by to go over Toe's 504 plan
1:30 Lunch
2:05 results from ultrasound
2:20 IV infusion
This was the first real break we had in the day. My mom and Toe played cards while I napped. I REALLY needed the respite.
4:20 Respiratory Therapy
5:30 Exercise
6:30 dinner...
8pm  IV Infusion
We still have another respiratory therapy, another snack and pills, a shower and linen change, and bed prep before we can go to bed...

I asked Mom to walk me through Qi Gong today. We tried, but people kept knocking on the door and asking questions. Food was dropped off. When we were stuck in a corner with the food tray while a tech set up for an ultrasound, the therapist finished Toe's respiratory therapy, and the nurse came in to log meds, we gave up. I'm telling you, sometimes it feels like controlled chaos.

The good news is that Toe has been prescribed an XBox in his room with Kinect games - so in addition to walks around the hospital, he can get exercise in the room.

My time is up, the boy calls...

Hostpital Stay: Day 5

Trumpet mouthpiece. This way he can practice a little but not shock the neighbors.

We had a nurse today who does not usually work the respiratory wing, so she did things a little differently than our normal. Usually, now that Toe is off maintenance fluids, he only connects with the IV pole for antibiotic treatments - 30 minutes every 6 hours. Today, the nurse would connect Toe with the antibiotics and then leave him connected... so he was much less mobile today than yesterday.

Almost every door in the ward has contact precautions listed on the door, which means kids in isolation, which very likely means CF. I think about our routine - all of the varying meds, all of the breathing treatments, all of the people coming and going, and the extras they have to bring us because we can't use the family lounge - and then I multiply that by 10?15? kids and I can see how things get missed or are done differently. We are all doing the best we can and working to help each other out for the benefit of these kiddos.

We finally decided just to take a walk with the IV pole. Toe can really hustle with that thing!

Inhaled meds are the first part of breathing treatment. He chose to bend it to blow back into his face...

As one might imagine, Toe is going through a range of emotions while we are here. Ok, we both are. Mostly he is comfortable and happy to be here, but he has his moments. We actually were able to have an appointment with his counselor today via FaceTime. It was nice to have another adult who is focused on his emotional well-being check in with him. We are so grateful she suggested it!

This evening a friend dropped by and brought a new (XL) heating pad (I'm having a slight fibromyalgia flare up. I'm stiff and sore!) for me and racquet balls for Toe and went with us to the sky bridge to play with a racquet ball and super ball.

We have hit the point in the stay where I become hyper-aware that we are effectively living in a camper, sailboat, or tiny house (choose your metaphor). Staying comfortable requires constant tidying and there is never *quite* enough room. Between the tidying, shifting furniture, supervising the constant influx of new teams, monitoring my kid's well being, and serving as primary entertainer, I am tired. We are working on being gentle with each other, showing our gratitude to staff and each other, and generally creating a safe place for both of us. More tomorrow!

Hospital Stay: Day 4 - Saturday

Our most important news is that J came to visit! J has had to work, so he dropped us off on Wednesday and drove home. Today he came to visit for the afternoon (he's still recovering from a cold, so he is going home tonight as well). We all agree that we are much, much happier together as a unit. We had a "sit down" dinner around Toe's hospital bed and caught each other up and laughed.

After dinner, we took a superball to the sky bridge and played. The hospital is practically empty on weekend evenings. It feels like we own the place. On weekdays, this bridge is so crowded, you could never get away with this. I had a moment, as Toe crawled on the floor to get the ball, where I thought of all of the germs around... He changed his clothes and washed his hands the minute we got back to the room and he will shower tonight before bed! I think it was worth it, though. He got some great exercise and he and his dad had a great time.

How does one shower with a PICC line? The nurses wrap a washcloth around the site, then put a plastic sleeve over it and cover the whole thing with wrapping tape. It's a beautiful thing. Because the PICC line goes directly to his heart, they have to be incredibly careful about getting germs on the line. Every time they use it, they sterilize the outside and then flush the line before administering IV fluids. Showering and washing with special sterilizing soap has been added to our night time routine.

Random tidbits:
There are a large number of CF patients in the ward right now. All of the room doors in the ward are closed and there are signs for contact precautions similar to ours or even more strict. We keep having RNs telling us that "this is the season." They seem incredibly busy!

Toe also spent a lot of time on FaceTime today with his cousin. I think they both have been missing  each other. At home, they speak almost every day.

Tonight was the first night Toe didn't order steelhead for dinner (if you're wondering, he tried the steak).

Hospital Stay: Day 3

Doing his Ministry of Silly Walks impression

Waking up this morning, I felt a little like I was on the set of Star Trek. A woman in a strange gown came into our room, pricked Toe's finger and read his blood sugar levels on a little box. She then talked into the communicator on her chest to exchange strange language (the conversation ended with "I'll doc it."). I actually started laughing out loud and had to explain.

The hospital does have a very surreal, other-worldly flavor to it. There's an odd normalcy to being tremendously vulnerable in front of strangers. I showered with a strange man in the room today (he was doing Toe's respiratory therapy). Strangers see me in my pajamas or just waking up. Yesterday, Toe broke down on the sky bridge (he said he was "hissed" - beyond hangry) and we stood there, holding each other, as people passed by...

I think we are starting to how our days might form a routine. There always seems to be something else to do or someone stopping by - CNAs checking vitals, the nurse to administer meds, the pediatric team, Respiratory Therapy, Food Services, housekeeping...

Toe has named his IV stand Ricky the PICC-y

Toe had an hour of one on one tutoring this morning. They have a school here, but because Toe is in isolation, the teacher comes to him. It gave me some time to take myself for a walk and do some deep breathing. The rest of the day has been filled with the routine - meal, respiratory therapy, vitals, repeat... The order changes, sometimes things overlap, but the repetition forms the backbone of our day.

Tonight Toe will be finished with maintenance fluids which means he will now only be connected to the IV stand while he does IV antibiotics (about 30 minutes every 6 hours). The rest of the time, he will not be connected. This will greatly simplify our lives and improve Toe's mobility. We have been taking walks the past two days but tomorrow Toe is excited to also do STAIRS.

A conversation from a few days ago:
Me: Toe, are you connected right now?
Toe: Maybe. I think they have WIFI, I'm not sure.
Me:..... I meant to the IV.....

On our walks, Toe has been trying his hand at photography. Here are some of his:

Tonight he gets his first shower with the PICC. Should be exciting. I think they have a special sleeve that goes over the PICC (did I mention that his actual PICC line is purple? He was very excited.). His arm is doing much less sore today and Toe's general attitude is good.

My cold is improving and so far, I'm feeling good as well. Tired. These are long days.

Hospital Stay: Day 2

Another busy day here in the hospital. We spent most of the day waiting to have his PICC line inserted. It finally happened at around 4pm and once an X-Ray showed proper placement, they were able to remove the IV. Now Toe will receive IV antibiotics via PICC line. It's a much better long-term scenario, but he's pretty sore tonight.

We thought he would get his PICC this morning, so he started fasting at midnight last night. Then when they coordinated everyone for the PICC insertion, it was too late to change plans and have him eat. He had about 3-4 hours where he could have clear liquids, but other than that, he had no food until after he got his PICC . This gave us some real ups and downs today. Kiddos with CF are so encouraged to eat, they are not really that familiar with hunger (at least not this one).  By 2pm, Toe was pretty hangry.

Having said that, he loved the popsicles he received as clear liquids. During a high moment (getting his second popsicle) he said, "If there's more to life than this, I have no idea what it is. All the popsicles I want -- for free!"
.
I think he was more upset about the hunger than the PICC insertion (which involved moderate sedation and having someone from Child Life Services to distract him).

Toe is still on maintenance fluids, so trips to the bathroom involve a trip with the IV stand. It's a waltz, coordinating the stand past all of the furniture. We play the Blue Danube and he dances on his way. To prepare for his PICC insertion, we actually covered him with stickers (a bullseye for the insertion point) and then had him waltz down the hall. We do it with style.

I'm going to start posting photos Toe takes... maybe tomorrow

 We also met with his team of doctors, the teachers who will work with Toe for the next couple of weeks (we talked about his school situation and school work0, met with Child Life Services, had a volunteer play with Toe while I took a walk, saw our CF Social Worker, did four breathing treatments.

Because we are in a respiratory wing and there are other kids here with CF, we are on contact protocols. Anyone who sees other patients has to gown up when they come into the room and we are effectively in quarantine. We are limited to Toe's room or can go walk around the rest of the hospital (with a mask). No play room, family room, or anything in our ward.

I had forgotten how busy days are. Between meds, meals, treatments, volunteers coming to play with Toe, various departments coming to visit us, we don't go much longer than 20 minutes without someone popping in. I think that calms down as we get into a routine. These first few days are busy getting everything set up and running smoothly.

We are still doing well. Toe had a really rough time between 2 and 5pm today until he could eat, but has been a trooper. We find our laughs where we can. And we found the thermostat, so tonight will be warmer (I have a cold, so I thought my body temperature was off.... turns out the thermostat was set to 50! Of course Toe didn't notice...)

IV in right arm, PICC in left, finishing breathing treatment on the way to X-Ray

Hospital Stay: Day 1

We have had a full day crammed into an evening. We left home around 3 and arrived at the hospital at 5:30pm. We have an amazing nurse tonight who got us settled in. Then we met with a pediatrician who discussed Toe's regular meds and talked us through the next 24-48 hours. Jason unloaded the car and then had to head home. This is his busy time of year at work and even though he works from home, there are so many interruptions in the hospital, that he wouldn't get any work done. We'll see him this weekend.

While I ordered dinner, the nurse put hot packs on Toe's arms to bring out his veins and then someone came in and inserted an IV. They will use the IV to administer antibiotics and maintenance fluids and draw blood until they can put a PICC line in tomorrow.

A PICC line is a tube that runs from his arm, through a vein, to his heart (but not into it!). With an IV, you have to move the site every 2-3 days. Once they place the PICC line, Toe will be good for his entire 2 weeks of antibiotics.

Toe much prefers a PICC line to the IV and has been complaining about the discomfort this evening. The procedure to insert the PICC will likely happen tomorrow morning.

We ate dinner, started IV fluids, and then the RT (respiratory therapist) came to do Toe's evening treatment. While Toe is here, we he will be doing four breathing treatments a day.

Our main challenges tonight have been getting Toe to the bathroom and doing nasal rinse while Toe is hooked up to fluid bags. It has involved gliding around furniture and a lot of laughter.

I'm not sure how much I will be able to write as Toe wants my attention. I'll try to post a little something each day. So far, we are in good spirits.