Hospital Stay: Day 13

This morning we took a trip downstairs to Starbucks. It may surprise you, but Toe completely charmed the woman behind the counter. Apparently she has a twelve year old son who is a goofball. They had a great conversation.

So. Today was the day. Toe did his PFTs and they had improved significantly. However, as he blew, we heard a mucus-y rumble in his breathing. They want Toe to have great PFTs and also be symptom free (or close) before he leaves. We talked with the pulminologist on duty and decided to stay the night and see how Toe feels over this next 24 hour period. He says he has some tightness in his chest and just doesn't feel right yet. They want Toe to have a really great 24 hour period before we go home. Or Friday. Whichever comes first.

Transport to PFT testing

PFTs measure the volume his lungs can hold and how forcefully he can draw in that air and blow it out...

The gown and gloves are for protection in an area where many people do breathing tests. This is to protect others and keep the space clean... The nose plugs were just from the test.

We are noticing his arm is MUCH better. He is able to straighten it completely now and the soreness is gone in the area of the clot. He still is having slight pain in his elbow area, but we think that is at the base of the bicep from him holding his arm tightly for so long. We are now reducing his Tylenol and Ibuprofen and applying heat. Mobility seems to increase each day.

I checked out of the Ronald MacDonald house, so we all three will be sleeping in the room again tonight. J, bless him, takes the fold out chair.

I am ready to BE home; I am not looking forward to the transition to getting there (packing up the room, getting home, assessing the grocery/rotting-things-in-the-refrigerator situation, starting up breathing treatments again, doing laundry, getting the kid ready to go back to school, catching up on homework if necessary, meal prep...).

Random notes: Toe has half and half to drink with his Orkambi - about 8-12 oz. The med needs to be given with fat. We have them keep it in the fridge at the nurse's station and give it to Toe with the meds. The cafeteria has randomly been sending up half and half in addition. Sometimes it comes in a small cup. Today they sent one of the creamer sized things of half and half. One. It just looked so lonely on the tray!

Also, J wanted to clarify that the racing on the sky bridge was DRONE racing (although Ty and Toe chased after their drones).

Note: the arm with the watch is almost straight!

Hospital Stay: Day 12

 Toe says, "I know, I look amazing. You look kind of dorky though."

Ok, the skinny on last night's drone adventure (J, Toe, and Uncle Tylor) is that Toe and Uncle Ty had a little (actual running) race up and down the sky bridge and then practiced technical landing maneuvers before racing their drones. The police *may* have stopped by to see what they were doing and make sure that the drones did not have cameras attached. There is nothing quite like getting a message from your husband that says "(Had a visit from a police officer last night :))." 

In other news, Aunt AL stopped by today for a visit. She brought a ukulele and Toe had a quick chance to play. Toe also had another FaceTime visit with his counselor. He mostly was ok, but again expressed how much he misses his friends.

After yesterday's adventures with the Grilches and Uncle Tylor, Toe was pretty beat today. He spent most of the day in bed playing video games. We figured it was a Sunday, we had no place to be, we'd try it for a day. Tomorrow he has school again and PFTs to see if his lung function has improved.

Toe's arm has really improved over the past 24 hours. They have kept him alternating on Tylenol and Ibuprofen and he was actually able to straighten it out today - first time since they put in the PICC. His cough is down to a little bark at the end of respiratory therapy and overall he seems better. I'm not sure he's at 100%, but he is much, much better.

 Random note: I just wanted to share this cool facet of the hospital. On our floor, the windows are etched. When the light hits them just right, it looks like decorations on the wall below. You can kind of see it in the photos below. It's some thing we look for every time we walk down that hallway. It's something small, but we really enjoy it.

Hospital Stay: Day 11

We had some great visitors today to boost Toe's morale and energy. Half of the family played with drones and racquetballs with Toe and J on the sky bridge, the other half took a walk with me around the hospital...

 We have known these boys their whole lives and they are getting so big!!

After their visit, we all needed a rest... and then I started feeling light headed and dizzy. J walked me back to the Ronald MacDonald house and I fell asleep. I'm here for the night.

View from the tram

 J and Toe were expecting another visitor tonight - Uncle Tylor. I think they had a date with the drones. Photos later.

Here are photos from earlier this week:

Toe took these:

 I took these:

I'm going to get some sleep and hopefully have more energy tomorrow...

Hospital Stay: Day 10

 

Toe had a cranky day today. I don't know if this is just the phase in the stay, or if it was because he fell asleep late and got up early, but talking him into doing anything was dreadful. He didn't want to do treatments. He didn't want to order lunch or even think about lunch. He didn't want to play games or do homework or go for a walk. He hated his dad's riddle. He was just pouty and sour. He DID want to try the new drones that his Grandma Gus sent him and was very frustrated when we told him he would need to wait until evening when everyone had gone home to try it on the skybridge.

Now on Toe's behalf, his version of pouty can range from subtle to grumpy, but it is rarely a tantrum-y or defiant kind of thing. His pouty/grumpy/cranky is manageable and can sometimes be distracted by humor or rest. And I think he has every right to be cranky after more than a week cooped up in a room and a few areas of a hospital.

 

So today we took it easy. As his mood improved, we would push the boundaries a little. When he started to balk, we would snuggle up and do something quiet for a little while. We watched bloopers, Bad Lip Readings, and Honest Trailers. We played some Kinect. I massaged his arm. J got us Starbucks for lunch.

They mop the room EVERY DAY and his socks still look like this by afternoon...

Tired parents

By afternoon, he was feeling better and we did get him to briefly leave his room. He also allowed us to both go away after dinner for an hour so that we could check into the Ronald MacDonald house close to the hospital (the one I stayed at the last two nights was across town - that's where they had room). This place is so close, when J gets tired in the afternoon, or if he gets a business call he needs to take, he can use this place as well. Tonight my job is to do laundry and my reward is a quiet room with a spectacular view. Keep your fingers crossed I can stay awake until it is done.

Toe's arm is improving every day, although he still has some soreness. His cough is much, much improved as well.

And if I haven't mentioned it lately, Jason is an amazing partner. He does a fantastic job of taking care of Toe and I feel so much happier and safer when he is with us. I can manage when it is just Toe and me, but I can relax a little when J is with us. We take care of each other.  I feel so grateful to know these two wonderful human beings.

Hospital Stay: Day 9

J and Toe did so well together last night, I am taking another night at the Ronald MacDonald house. It really helped to sleep in a soft bed, to have some privacy and quiet, and to not be responsible for anyone but myself. The guys, meanwhile, held a D&D party in the hospital room and invited a bunch of friends.

We are in the hospital through the weekend. Toe is scheduled for PFTs again on Monday afternoon. The goal is to get him up to 110% (he was at 113% in July and the numbers kept creeping down every visit after that. The day before they admitted us, Toe blew 91%).

In the meantime, his arm was sore this morning. We had been giving pain meds only as needed, but today they decided to give them alternating on a regular schedule to try to make him more comfortable. We also worked on massaging the muscles in his arm. After favoring it for a full week, his arm muscles are tight and sore (in addition to the blood clot in his PICC).

It was such a beautiful day, J and I took a walk outside while Toe was in school. The weather reminded us of autumns in our late teens/early twenties in Minnesota and New York. We both miss going for walks at home.We usually walk a couple of miles together every day. We use it as our check in time.

Our ward is gearing up for Halloween. Here is the nurses' station:

J's work has slowed enough that he has been able to work from the room the past couple of days. I hope that lasts because it is SO NICE to have him with us.

Respiratory Therapy came at a different time today and we weren't sure they would be sticking to a routine of RT every four hours, so we spent much more time than usual in the room today, making sure we didn't miss them or make them wait. It worked out well. Toe seemed extra tired today and mostly wanted to stay in bed.

He spent most of the day creating new D&D characters and bouncing between breathing treatments and meals. Our friend Brian came by in the evening and joined us for dinner. After a late lunch and before Brian arrived (around 4pm), we all hit the wall. I sat down to knit and started dozing in a chair, Jason laid down and started reading comics, Toe played an app on his iPad. It was the quietest the room has ever been. The sun streamed through the windows and warmed everything. Life is good, but we are tired.

Hospital Stay: Day 8

Toe did really well on his PFTs today. His numbers were back up as high as they were before he got sick (but not as high as they were this summer). We were all delighted with the numbers (including the housekeeper who was cleaning the room at the time. EVERYONE here is invested in these kids)

We learned how to play Yahtzee  took a walk, had some lunch, and tried (but failed) to play Wednesday Bingo on the live feed (Toe got a prize anyway).  Then Toe's teacher arrived for an hour of school.

Forget Bingo, let's snuggle!

Toby and his teacher have been working on conducting an experiment using the scientific method. Yesterday they made a hypothesis and prepped the lab; today, they conducted the experiment. It had to do with density. They used different amounts of sugar in different cups (but the same amounts of water and food coloring) and then put the water into a test tube to see if the water would all mix together or stay separate by density.

 This was the result:

And then this was the result of our kid enjoying the food coloring (don't worry, we didn't care and we KNOW he wouldn't do this in regular school)

The physical therapist arrived and talked to us about how to help stretch and relax Toe's arm. At this point, he has been favoring it so long, much of the pain is coming from sore muscles. The PT also spoke with us about making an action plan for Toe's physical activity to keep him healthy once he goes home. The key is to balance aerobic activity, strength, and stretching. We've been great about the first one, but have largely neglected strength and stretching. So there is another thing (but a very important one) to add to our routine when we get home.

As the physical therapist was there, the nurse came for vitals, respiratory therapy came, my mom and Jamie arrived, as did our friend Greg.

That was my cue. J had 24 hours to see our routine, and I made notes about the predictable parts of the schedule. After being "on" a full week, I packed a bag and left J in charge. I'm staying at the Ronald MacDonald house for a rest tonight. J and our friend Greg (and maybe Grilch and Mav) are having a Dungeons and Dragons night in the hospital.

It is quiet here! I am only responsible for myself. I could stay up all night watching Netflix. I will likely be asleep within the hour. I am so very tired. I go back to the hospital tomorrow morning so J can work...

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...