A New Adventure at Home

Performing a "saline flush"

We opted to come home and continue Toe's IV treatment from here for the next week. J and I have never administered medicine via PICC before, so yesterday an Infusion Specialist came to the hospital to train us. We are administering two kinds of antibiotics - the Cefepime 3 times a day and the TOBI once a day. Each uses a different mechanism. Here's the set up for the Cefepime:

Step 1: Set up before you take the plug off Toe's PICC line. Attach tubing, prime the line, put the syringe in the machine.
Step 2: Alcohol wipe the PICC on Toe's arm and wait for the alcohol to dry completely.
Step 3: Very carefully, while still holding the PICC stump, open the syringe for saline flush (pray you opened the packaging beforehand) and attach it to the PICC line WITHOUT having Toe breathe on it.
Step 4: Connect PICC stump to the tubing hooked to the syringe in the pump and turn the machine on.

saline flush, antibiotics, alcohol wipes, tubing, and the pump

 Super simple, right? Then there's the whole - when you're done, screw the red plug into the line and save the old syringe and tubing for next Cefepime while you simultaneously saline flush the PICC line again... While crouching over the kid. In the dark. We have found it works best with four hands.

The good news is that the treatments are mostly centered around sleep time. Only one treatment during daylight hours. The antibiotic pump is surprisingly portable.

 This morning we had a visit from a local home health nurse who is available if anything goes wrong or if we have any questions.

The pump is about the size of an old-fashioned cell phone. The yellow liquid in the syringe is the antibiotic and Toe's PICC port is on his left arm, up by the pink sticker. You can just see the purple stump.

 Our entire day was pretty much filled with treatments, meals, laundry, and homework. Toe is working on a slide show (1st grade version of a Power Point presentation) on Fruit Bats. He missed the First Grade field trip to the zoo, but did get an OMSI slide show on bats from the teacher at the hospital.

This week will involve me pushing us through the schedule. The kid wants to play Legos. However, we are at home and if I can time it right, we might even be able to take a walk down the block to visit our Nana and Papa. The temperatures here are better for Toe. The last couple of days, it was over 90 and Toe wilted if we went outside. It was a sunny 63 here and we did step outside for quick errand.

Hospital Stay- Day 8 - PFTs

Toe, pre pizza-annihilation, has gained 3 pounds in a week

 Today Toe had his PFTs - Pulmonary Function Tests - to determine whether his lungs have improved enough that we can take him home for the second half of his IV antibiotics. The test is performed by breathing into a tube - a few normal breaths, and then a breath as deeply in and out as you can. They measure the volume the lungs can hold and the speed by which they can expel air. These numbers are then placed onto a continuum created by measuring other children his age with CF. Once he has established a baseline, those numbers are used to determine improvement or decline.

Toe's baseline has been around 116%. When we came in last Thursday, it had dropped to 102%. The drop in function, combined with the fact that Toe had already been through two rounds of oral antibiotics is what put him in the hospital.They wanted to see a dramatic improvement to be able to send us home, and Toe gave it to them. His first time he blew 121%! The next two times he blew 115%. In addition, Toe has gained THREE pounds in our week in the hospital (it's a great feat, except that I have probably gained more :P).

It takes time to get medications ordered and machines to administer them. We still need training to give the IV antibiotics via Toe's PICC line. We'll continue the routine: two antibiotics through the PICC (three times a day) and four breathing treatments a day from home. The plan is to train us and send us home sometime tomorrow.

After our PFTs, breakfast, and a talk with the doctors, the tutor arrived to help Toe with his schoolwork. The guy is great. Toe did not even want to sit up in bed, let alone do school work (a late night last night, poor sleep, and an early morning make a grumpy child). We ended up leaving the tutor to work with him, knowing that things would probably be better without the parental audience. When we came back 45 minutes later, they were working so well, we left for another 30 minutes.

And then the music began. An old friend of ours brought his guitar and J and M settled into the corner with guitar and mandolin and began playing. M said that everyone notices when you walk into a hospital with a guitar. He even was given a free escort. In the elevator, someone asked him if he could play "Piano Man." He said, "Do I look like I can play 'Piano Man?'" I don't know. Cracked me up.

 It turns out it was also music day at the hospital where a group called ??Music Rx?? comes and plays music for and/or with the kids. Sometimes they give guitar lessons. Sometimes they play music as a sing-along. Today, after M left, a woman arrived with a guitar and took requests. We happened to have a few instruments with us, so we had a Beatles afternoon. Toe's first request: "Yellow Submarine." He requested "Hey Bulldog" next, which she didn't know how to play. So instead, we did "A Hard Day's Night" and rounded out the set with "Hey Jude."

 Another breathing treatment, another set of visitors, and now we wait for final evening breathing treatment. Toe is hooked up to the machine, so we're watching movies. I can't remember if this is the second or the fourth time of Monsters U.

We're all worn out. Toe just asked if we could stay up late tonight because it's our last night in the hospital. The question was followed by a giant yawn. That would be an emphatic NO.

Hospital Stay - Day 7: Dad-Dad

 Can I just tell you how much easier this whole experience is with Jason here? I admit, this morning I was kind of cranky when they both became gregarious and silly, but a shower solved that. I actually go to TAKE a shower (and the water is hot this visit - bonus).

 Respiratory therapy came late this morning, so our schedule was a little strange today....

That was as far as I made it last night. Toe fell asleep late and kept waking up whimpering or crying in the night. I think he was overtired. It was a long night for all of us. And this morning Toe started respiratory therapy at 8am to prepare for his PFTs this morning.

So here was yesterday:
We took a walk and discovered the general playground on the first floor. When you have a kid like Toe, you don't automatically run to the playground, first your parents must weigh the risks. Toe stood patiently while J and I talked: This is a playground all kids can use. There must be tons of germs here. Yeah, but there's no one here now. What if we hand sanitize, hand wash, and change his clothes as soon as we're done? He does have a mask on.... But he has the PICC line. We need to keep an eye on him and keep him from climbing..

We decided to risk it. Our poor kid needed some play time.

Toe and Dad played hide and seek. I had to keep reminding him not to climb.

We walked around the rest of the complex until Toe was a little pink and we had to take him back to the air conditioning.

The rest of the day, we had a couple of visitors, and spent some low-key time. We were all tired and ended up watching a number of movies. Toe got a bath in the unit tub (deep with a great undersea mural on the wall. The mural bugs J because it includes fish and animals that do not belong together. Think polar bears and penguins in a picture together).

Toe played happily with a few cups and a large syringe-squirter.

It is wonderful to be together as a family. 

We were all ready to get Toe to bed at a relatively reasonable time and then I went to set up J's fold out bed and broke the thing. We had to wait until J got back from a friend's to fix it (the front desk had called maintenance, but they hadn't come). Then Toe had a hard time falling asleep and before we knew it, it was 11:30. Poor guy, he's the one who suffers most.

Now we're waiting for transport to take Toe to do PFTs. More soon.

Hospital Stay - Day 6: The Countdown

 Forget counting the days until we go home, we have been counting the days until Dad arrives.  We expected him tonight between 10 and midnight, but he peeked in the room at 8:30 and we were delighted.

It was a good day today. I actually love the hospital on the weekends. There are so few people, and the atmosphere is much more relaxed than during the week. It feels like we own the place. Most of our skybridge play is done on the weekends. Today, we had friends arrive at 9:30 and since all three boys were raring to go, we took Toe's dragon paper airplanes and superballs to the skybridge to burn off some steam. Toe was SO happy to be with kids close to his age.

Later, G and A arrived and we took a matchbox-sized remote control car to an empty area and drove it around. A commented, "I always thought that driving remote control cars was kind of a static thing. You just stood there and drove your car. I didn't really understand how much running around and chasing your car is involved." I think Toe's style of remote control car driving reflects some personal style...

G and A left us when Toe started to wilt, and he and I curled up on his bed and watched a movie. I think we both needed a rest.

We had a cool experience on our final walk of the evening. The windows in our floor's hallway are etched at the top. Tonight, as we were walking, we noticed that the angle of the afternoon sunlight placed shadows perfectly on the opposite wall. They were centered and looked as if they had been painted there. I thought it was amazing. I get my kicks where I can.

 It was another beautiful day in the city - warm, but with a good breeze on our hillside.

 Here's another statue I love:

It's a late night that I was unable to avoid. Toe is still doing breathing treatment. Going to be a rough one tomorrow morning.... I'm glad J is here and we can do this together.

Hospital Stay - Day 5: Mom Gets a Break

It's a dragon.

 It was a great day for both of us. Toe had more energy, and I had time away.

After a better sleep last night, Toe woke on his own at 7:15 this morning. By 7:30 he was up and embracing the day.

Scheduling here is kind of loose. There are so many moving pieces - respiratory therapist schedules and the number of patients, certain patients needing more attention, a variety of emergencies to spice things a little. Some parts you begin to be able to predict: Toe gets IV meds at noon, at 7, and at 4am, so we have to be in the room then. Visiting hours finish at 8. You must order your meals an hour in advance.

Respiratory therapy is a little harder. Once they come in the morning, they try to return every four hours, but it is REALLY loose. School... that one I'm still figuring out. They actually have school here in a regular classroom for those kids who can make it in there. Because Toe is in isolation, they send a teacher to us who stays 30 minutes to an hour... There is a time they shoot for, but that also varies.

One of the teachers said yesterday he'd be back at 10am (although the coordinator had told us the day before our regular time would be at 1pm). So, we were here at 10 and Toe played video games for a while, but then turned them off and painted, did some homework, and played. He painted a sign for his door and a dragon as well (I think the teacher finally arrived after 2).

As for me, I owe Uncle Bob. I think everyone my age has an Uncle Bob. Mine is a rock star. He is actually my mom's uncle, a guy with a great sense of humor and a giant heart. He came to visit us a few days ago and said, "I can come Friday. I want you to take a chunk of time and get away. Figure out what time you want me to come."

So, he arrived at 1 o'clock and after a check in, he handed me his keys and told me to have a good time.

 I didn't even know where to begin. I bought a coffee and decided to sit and look at the view until my coffee was finished. No internet, no music, no book. I watched the mountain, the breeze through the trees, the birds flitting by. To say the view here is spectacular doesn't quite cover it. It was such a relief to just sit and be quiet. An HOUR later, I wandered the floor and took photos of some of my favorite art in the halls (and the view).

 The view:

 I took the tram to the river front and got information on the health center down there, then returned and went to the student center here to inquire about the pool. Then I came back to the room to check in. Since they were doing well, I changed my clothes and took myself for an hour long hike on one of the local forest trails. I returned with the endorphins pumping and a much better attitude. I was gone for almost four hours.

Meanwhile, Uncle Bob and Toe had a great time together. They played cards, sang, and played video games. When I returned, they were both relaxed and happy (or at least seemed that way :)). What a difference a little time makes to your patience!

After Uncle Bob left, we ate dinner together. The room service menu has a wide selection and Toe is an adventuresome eater. He has tried more than half the menu. It's hit or miss. The steak is a little tough. The burgers are a little dry. The curry is mild, but good. The salmon and roasted potatoes is a sure bet. Tonight we scored. Toe ate Pork tenderloin and mashed potatoes with mushroom gravy and roasted tomatoes stuffed with spinach and Parmesan.  I ate their Northwest Harvest salad with salmon and a side of steamed asparagus (still crisp!).  We snuck bites of each other's dinner. Very impressive.

 To cap a lovely day, we had a visit from some friends who have a son born the day before Toe. They are yin and yang. They are about the same size, both only children, curly and straight, blue eyes and brown, one a little wild and gregarious, the other thoughtful and responsible. They play well together and really enjoy each other's company.

Tonight, Toe's PICC line arm was sore (too much boxing on the Wii this morning), so he could only play boxing right handed. Mr. D came and played the left hand and together, they knocked out champions. Then they moved on to other games, working together or taking turns. This was the first time Toe has had a chance to play with a kid even close to his age in forever (excluding Face time with his cousins).

Meanwhile, I ended up chatting at Mr. D's parents as if I were desperate to speak. I was just so happy to see all three of them.

Tomorrow we have another play date in the morning and then J is scheduled to arrive late tomorrow night! J will be with us Sunday and Monday and Toe's PFTs on Monday will determine whether we can do the IV treatments from home or if we need to stay here for another week.

Hospital Stay - Day 4: Fraying at the Edges

 The kid woke up grumpy. Now, to be fair, grumpy for Toe is still pretty good. He had moments of being fantastic today. There were also many road bumps. We had to have many talks. He had more than one defiant moment with nurses and respiratory therapists. This hospital thing is just cutting into his play time. Every time he starts to get really into playing, there is another distraction: IV therapy, meal that must be eaten, breathing treatment that must be done...

Our respiratory therapist today was fantastic. She said to me, "It's a control issue. He has absolutely no control here. So if he wants t make up the rules [of the game they were playing], I'm going to give it to him." She was SO right. The less control he felt he had, the more defiant he became. No tantrums, just digging his feet in and slowing everything down.

For your enjoyment, here are some photos he took of me while I was trying to have a serious conversation with him:

(Ok, if I make a face, maybe he'll laugh and tune in again)

But, seriously

No, really

Ok, I'll flash you my "goofy-serious mom" face. I get it.

We were able to take a really nice walk together. We spent an hour writing notes to each other (in character during imaginary play). He worked with one of the on-site teachers to learn about bats. We had family visit.

Although I had to push, pull, and cajole, I think I managed the schedule better today. Things happened in a timely manner and he was able to get to bed earlier (still not as early as I'd like, but somehow getting ready for bed took almost an hour....).

I'll spare you the dirty details. Let's just say, I felt a little like a nag and a lot like the "NO" mom.

However, in the evening, after Toe actually ate a decent dinner, and earned the right to play in the courtyard. Toe is in isolation here. When he is in the unit, he is confined to his room. If he wants to leave his room, he must wear a mask and immediately leave the unit. So we can walk around the hospital, but he can't play with any of the kids here (risk of infection. We're in a respiratory wing. CF kids can infect each other and there are other kids suffering from various viruses/bacteria).

The gray area of our wing is the courtyard. If no other kids people are out there, Toe can go out to play. They gave him a kickball that came to us brand new and that we disinfect after play. It stays in our room.

Not only did we get to go out this evening for the first time, friends arrived right then (with clean laundry and flowers - I kiss your feet, G and A!) and played two on two with us. Shockingly, Toe's team won. Here's the courtyard:

 Today's lesson: basketball with a mask makes you hot FAST.

Toe actually got some great exercise and didn't have a coughing fit (an improvement).

Some quick answers to FAQ:
1. I am staying with Toe in his room. They actually prefer this because that means I entertain him. They have amazing staff and volunteers who are available for the amount of support you need. When J and I were both here over Christmas, we didn't need much more than the medical stuff. Now that it's just me, they check in more regularly.
2. They are feeding me. Some grant they currently have is providing me three trays a day with Toe's meals (we eat all meals in the room). It's a little bit of a pain, because delivery of a meal takes between 45 minutes and an hour and a half. The conversations are tricky:
Me: Toe, I'm ordering food. What do you want?
Toe: I'm not hungry.
Me: It's not for now, it's for an hour from now. Maybe more. What will you want?
Toe: I don't know. I'm not hungry now. Let's deal with that later. I'll know what I want when I'm hungry....
3. We are here through Monday. On Monday, Toe will have PFTs and that will determine the length of antibiotics and when we can go home.
4. J will be joining us on his weekend, but until then, he is home, working, and Face Timing with us every chance he gets. It has been very hard for him.

Hospital Stay - Day 3, Awesome Day

The shirt says, "Full of Awesome"

 I'm going to have to figure out how to manage our schedule a little better. Toe didn't get to bed until 11 tonight. At home, we do snack (or dinner) at 5ish, breathing treatment at 6:00, dinner at 7:30, bedtime routine at 8:15 and Toe is usually in bed by 9. Here, the last breathing treatment finished at 9:30 and he still had to do snack and get ready for bed. Because Toe was tired, it took forever and the poor boy didn't get lights out until 11pm. He fell asleep in under two minutes.

We told them we like to keep on the early side of things, so they showed up at our room at 8:30am this morning (after an 11 o'clock night last night) and Toe was still asleep. I told them to come back at 9. I want to do an earlier schedule, but not if he's getting to bed this late. Seems like the respiratory therapists show up late We have told them we want to be DONE by 9, preferably earlier but it never seems to work out. In their defense, they have to usually do about 20 clients in a four hour time slot, so people can get to bed by midnight. So it seems like maybe I need to make the adjustment.

We had a good day and were kept pretty busy. Traditionally, antibiotics make Toe wired, and I noticed the first signs today. I don't know if he's tired, stimulated by the antibiotics, or just excited to have an audience, but the kid was buzzing today (like a bee - just go go go, talk talk talk).

We played with a new trading card game. We did breakfast, we took a walk. Toe Face Timed with the cousins.

 And then it was time for Wednesday Bingo. Every Wednesday, Child Life Services holds a Bingo contest at 1pm. Volunteers hand out sheets and markers and they have a live feed on the tv. Kids follow along and when they get a bingo, they call in and they announce the kid's name on the tv feed. There were only two games, and each game took about the first 10 winners.

"Hi! It's time for bingo!"

 Toe did his breathing treatment while he played, and darned if he didn't get a bingo for each game.

 When a kid would call in, the conversation would normally go something like:
"This is bingo. BINGO!! We have someone who won a bingo! What's your name? What floor are you on? What's your room number? Great! Nancy just got a bingo! Yay!"

When Toe called, the conversation on their end went like this, "This is bingo..........................Wow. Thank you for all of that information at once! Toe got a bingo!"

On our end, it was hilarious. Toe jumped up and yelled "I got a bingo!!" I dialed the number for him and he said into the phone "Hi! This is [his full name] and I'm in [wing and room number] and I just got a bingo!" The respiratory therapist and I tried really hard to keep straight faces as Toe did his very serious voice.

His two bingo wins.

 After bingo, we played more card game.

 At 2:30, the first of our guests arrived. It was meant to be a short visit, but they were still here when our next guest arrived (we were playing dinosaurs and portals. Toe took almost an hour in setting the scene and basically performed for the three adults. He was a little wired.). Our next guest stayed through a movie with us as I tried to get Toe a little rest. Next came a friend fresh from the coast who brought Toe a book of dragon paper airplanes. The next guests brought me a few things and stayed long enough to toss the dragons for a bit. Everyone left for dinner and then we had our final guest come by to have "dragon battles" with Toe.

I hadn't planned it to be such a full afternoon, but we were having a great time and were happy to see everyone.

Meanwhile, the Respiratory Therapist noticed that Toe is not breathing as deeply as he could during the nebulized portion of the breathing treatment. She made up this game where she took a small wad of tissue and put it in the end of the tube. Toe would then suck the tissue in a little and then shoot it out (aiming at a wastebasket). Simple. Effective. Brilliant. I love pediatric hospitals. This one really gets that kids need to be kids and are more likely to do things if they are posed as play.

Not sure if I can maintain this pace, but we had a great day. I'm going to get some sleep while I can.