Hospital Diaries #7-8

Day 7

This is my schedule usually.

6am:Thyroid medicine

8am: first therapy

10ish:rounds

12pm:second therapy

1:30pm: physical therapy

4pm:third therapy

8pm:fourth therapy

I have a ct scan Monday at noon. I also have my gtube and bronc at 7:30am on Tuesday, so that will be fun.

At physical therapy we went outside and did a few different exercises.

Brianna and I were alone all day, which was actually nice since it was just us. We watched tlc which had on four weddings and say yes to the dress. My aunt and uncle visited, which was nice.

Someone came in from music therapy and we played ukulele. It was sort of good to have something different to do.

We went on a long walk for around 45 minutes at 11. We took a couple laps around the lobby and went to a lobby.

Day 8

Today my sister had a bronc. They said it would be at 12, but then it was moved to 2m30. They put her on call so it could possibly be moved up sooner and she ended up going down at 1:30, but didn’t go back til 2:30.

Right now I’m updating my computer which takes awhile. I have treatments at 4.

My mom went and talked to another mom with a daughter who was going to get a gtube.

When Bri gets back I want to play jenga with her. I want to go to Michaels this weekend to get some fabric to make a tie blanket. Brianna made it one time we were admitted. It’s nice because it’s so thick and you can choose which fabric you want. For Brianna’s they’re both kind of fleece and one side is really soft.

I got pfts done. They’re a bit better which is good. One is 82 the other is 101.

It was really foggy today.

That’s all for now,

Bye.

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Hospital Diaries #6

I wasn’t dong the greatest in the morning. I was depressed and just down. I think it was all just hitting me at once. I spent an hour watching vines and doing therapy and stuff and once I got caribe and hung out with Brianna for a little bit I started to feel better.

I didn’t get great sleep. I think I fell asleep around 2am and the I was woken up at 3:30 for ivs and I kept waking up. It wasn’t fun. Brianna and I walked around a bit in the morning. We got caribe from the vending machine on the lobby and went outside to the courtyard. It was nice and since in was around 10-11 it wasn’t that’s hot out.

At 1 I got my blood drawn for levels. At 1:30 we went down to pt. We went out to a different courtyard and did some exercise.

After I finished my third therapy we went on a walk. We actually just got back, we walked around for a half hour, hour. I’m tired now. One of the inpatient doctors came in and said we had some times for the bronchiole scope and stuff. Brianas is one Thursday at noon. My gtube and bronc would be next Tuesday at 7:30am. It’s far away, but at least we have times.

My mom made sweet and sour chicken and ride, which is my favorite. They put us on an anxiety medication for panic attacks. They also said if we were having difficulty sleeping we could take it to help us relax.

We asked child life for games and we got Jenga and sorry. I think when the tower for jenga falls it will really loud because of the hardwood floor.

I think we’re going to watch a movie soon.

That’s all for now,

Bye.

How I told people about my CF

Throughout my life I’ve had to deal with explaining my disease. When I was younger, I think it was more difficult to explain it. I had a decent understanding as to what it was, but it was harder for other kids to understand. It is definitely hard to grow up having a responsibility of doing these treatments and taking these meds that relies solely on your own doing. Yes our parents helped us, but as we grew up we were taught more about how we had these responsibilities that were important for our health.

Most kids have some responsibilities, like doing chores, or taking your dogs on walks, mine were just different. It’s a good thing to have, but its always felt like I’m older than I actually am since I have to worry about things most kids don’t have to deal with my age. I’ve learned to make do with it, sometimes I’m grateful to have that extra something to deal with because it makes me thankful for things more and not take things for granted.

When I was younger It would be harder to tell people. Kids wouldn’t understand, didn’t know what some health issues meant. Until I was around 4th grade and met my current best friend, I hadn’t actually met someone who knew how much cf affected me and my sister and what cf was in a certain depth.

When I told people about it I would always have different reactions. Looking back at it, I didn’t tell many people. When I was in 4th grade I had this one “friend.” She ended up not being the nicest person and didn’t understand cf. When we told her she had ended up not being nice about it. She told people we were just saying it for attention, which looking back at it is actually really rude since cf can be so severe. She told our whole class about having to go down to the office before lunch to take pills, which made it sound bad.

All of our teachers of course knew about it and the office. Some people would just not react, would brush it off. No one really took it in account for something that could actually affect someone. Since it is a rare disease I understand that to a certain extent. No one has really heard about cf.

One time in my sisters 5th grade science class they watched a video or something about cf. Brianna had gone home early due to stomach issues, but her friend told her. Someone said they knew someone with it. I think they should teach more about certain diseases like cf, or eds, or something. It can help people understand more and learn that there is more disease out there than just cancer, or the flu. It can be frustrating to hear that not a lot of people know what cf is, that’s why Awareness is so important, especially since it is a rare disease.

In 7th grade I had a bad friend experience. Obviously I won’t say her name but she wasn’t the nicest either. One time when Brianna was being admitted, I was coming with Bri to the hospital to help and such, and let’s call her Jessica. So Jessica said I should go to school. She didn’t understand and that wasn’t the only time.

I knew her since 6th grade so it was before I was getting admitted. She did a couple other things to annoy me and be rude and I ended up ending that friendship.

That’s all for now,

Bye.

Hospital Diaries #6

Today we were actually doing stuff.

I woke up at 7:30 and did therapy at 8. I heard we had pfts and ekgs. I also had to take a shower. I had the ekg at 10:30 for a prolonged qtc which can because by the celexa. It’s a longer resting beat of the heart and we’ve had it a little bit in the past so every time we get admitted we have to get one to make sure it’s not to long.

Of course it wouldn’t be a hospital stay without watching the office and playing the sims. I ate around 1 which is a bit late, and we had physical therapy at 1:30. We did this thing where we throw a ball that has a bunch of different exercises on it. When you catch it you do the exercise that it lands on. It made it a little more interesting.

We used these 4 wheeled, almost like a skateboard that we sat on and used our legs to move us down our hallway. Then one of us sat on it and the other pulled one another while holding on a jump rope.

My pfts number for my small airways was 84, and my lsat one was 114, which means it’s 29 down if I did the math right. My large airways were 79. So there not great, but they could be worse.

I’m hooked up to Toby right now, watching the office. I’m about to do therapy and I have a headache.

That’s all for now,

Bye.

Hospital Diaries #5

Today was another chill day. I woke up around 7:30. I did therapy at 8 and ate some breakfast after. I’m planning on doing this challenge called draw this in your own style. It basically is an art challenge where you take someones drawing under the hashtag draw this in your own style and draw it in your own style. Ill try to upload it soon, but I’ve barley even started the drawing.

I of course played sims. I keep forgetting to upload pictures of what I build and redo but always seem to forget. Right now i’m mostly focusing on apartments and redoing them, but every so often Ill build something.

Today i was mostly hanging out in Brianna’s room. I ate to many resses, but they are delicious.Today was mostly watching the office, eating snacks, and playing sims.

My friend, who I’ve talked about before, Vanessa is visiting us at 7 so i’m excited and happy to see her. Were probably going to walk around a bit.

Brianna, my dad, and I walked to this one side of the floor to see outside to a parking lot because there was a car show. Were not able to go down because of germs, but we get a gift bag. Our dad went down before he left because people he works for were there and stuff. After that we went don and satin the courtyard. Ist a butterfly court yard, but there were no butterflies sadly. Were still planning on getting a bronc and me getting my gtube next week sometime.

Thats all for now,

Bye..

Hospital Diaries #4

Today nothing really happened. I played the sims, we binged watched say yes to the dress since it was playing constantly on tlc. We walked around a bit and plan to later, went to a gift shop and of some candy. We cut the walk short since I was having an episode of breathing problems.

I took a shower today. My hair was sort of oily so it was a good thing to do. I drew a bit today. I’ll upload the picture soon. I lost 2 pounds. It’s probably from the clean out which I guess is a good thing since the weight wasn’t benefiting anything.

We’re still planning to do a bronc on Tuesday or Wednesday. I think I’m still getting a gtube at the same time which I’m nervous for. When I got a picc it was at 8 and it was weird because everything happened so fast which I didn’t like that much. Usually it takes at least a half hour before the anasteseologist. I was the first one that day so that’s why it went by so fats. I prefer to wait actually so I can process it. When I got the picc it was happening so fat so I didn’t have time to think about what was going on.

I filled out a hope bead sheet and got them. I’ve done them once before and try to do it every time which I usually forget. Now my necklace looks more full instead of just like 20 beads it’s around 40ish.

That’s all for now,

Bye.

Hospital Diaries #3

I got the picc today. I woke up, they came in around 8 and I had to roll down my iv because I was on fluids. When I got downtown there I didn’t wait to long for everything to happen. They asked me questions, I changed into a gown, got my vitals taken and then someone gave me some relaxation stuff before rolling me back to the or. For most of the day I was groggy.

I talked to phycology about my increased anxiety. I went and walked around a bit for pt.

I officially have no ivs. Yay. Hopefully I get better sleep tonight since I won’t be hooked up to fluids and don’t have an iv. Last night I got like 2 hours of sleep. I also had to get my blood drawn at 10:30 and later at night for tony levels. The person who drew it was really good, which is always good. I’m glad it’s The Weeknd so I get to chill.

The doctor came in and said we would be gets bronchioles scopes either Tuesday or Wednesday and that I would most likely be able to get my gtube at the same time. I’m really nervous to get it and know I’ll be freaking out which is always great.

That’s all for now,

Bye.

Hospital Diaries #2

So I did not get a picc today. I woke up did therapy, and my sister had already changed into a gown when we were told that we wouldn’t be getting them today. So rounds. My X-rays showed for my stomach that I am indeed, backed up. If you don’t know what that means, it has to do with bowel stuff. So I’m taking mirialx every hour. They said when we came in, in the morning they heard crackling in my lungs, but after I did therapy it was clear.

I’m so full from all the mirialx that I didn’t eat a lot today. So from the Toby it messes with your kidneys so you have to drink ALOT of water. 3 liters to be exact. So we decided, especially because I’m already drinking so much mirialx, that I was going to be on fluids. So I’ve been on fluids all day which is weird. I ended up having to get a new iv because the one I had wasn’t working. I was going to go down to the gym at 3 but then a physiatrist came in so she said we’ll do it tomorrow, but I won’t be doing it tomorrow since I’m getting a picc at 8am and my arm will be sore. I have one more therapy for tonight and then I’ll be set.

We’re trying this sleeping protocol thing which is where we close the curtains and stuff and can’t go on our devices. I’ve tried it before, the not going on my devices and it doesn’t do anything, but I still have to try it.

I’m sort of nervous for getting a picc, but I know I’ll be more nervous tomorrow. I don’t know why I get nervous even though I’ve done this many times before but I still do.

That’s all for now,

Bye.

Hospital Diaries #1

So today I got admitted. I got the call the room was ready at around 3. Once I got to the hospital they asked questions, I unpacked, all that Jazz. I’m in a respiratory isolation room, which looks a lot different than other rooms. After waiting a bit and picking what to,e I’m going to start my therapy, which is at 8, I got an iv. Luckily they got it on the first try, so I only got poked once. At 6 I went down for a lung and stomach X-ray. This may be tmi but it’s apart of the cf life. Since I’ve been having irregular bowel movements they wanted to take an X-ray of my stomach to have some information as to what’s going on. I was down there for around a half hour.

I just got hooked up to Toby which is an antibiotic and also got my blood drawn. My mom ordered some pizza and breadsticks from this awesome place called pizza house. I’m sure I’ve talked about this place before. We usually get it the first day of being in the hospital.

At midnight I’ll be npo which means I can’t eat or drink anything after midnight. I’ll hopefully be getting a picc tomorrow. They don’t know what time, but will know tomorrow. I’m really hoping we’re getting it tomorrow.

Sorry this is short it’s hard to type with one hand.

Anyways that’s all for now,

Bye.

Crap Lungs and Sleepless Nights

Another sleepless night to add to the book. Well technically it’s not a sleepless night it’s just a bit to late for my liking, then again when am I not up this late. So I’m laying in my bed, wishing my stupid internet would work. I’m currently using my sisters phone as a hotspot. It’s a good short term solution, but it drains everything out of your phone.

My sleep issues have not died down and won’t be anytime soon. My next sleep study is for November 1st, and that’s the soonest we could get. I can’t decide whether the lack of sleep is from my actual sleep problems, or my crap lungs.

Now taking into account, my lungs aren’t that bad all things considered. Ya there not your typical “I can walk up stairs fine” lungs, but they could be worse. Now for me, ya it’s not very good. I have a lung infection, probably going to be admitted soon, but I have to accept that and wait. At least I got to go to Paris before yet another lung infection decided to invade my body. Now my pfts weren’t awful last time, actually a little better than the previous ones, but pfts are weird like that. Not accurate all the time, depends on effort and technique. One of my numbers were 86, which is pretty good, but can be pretty annoyingly inaccurate if you ask me. When you can barley readjust your blanket without getting out of breath, the fact that there that high proves to call them inaccurate. Plus I’ve never been great at pfts and vocal cord disfunction doesn’t add any benefits.

My episodes of breathing problems leave me unable to talk for long or short periods of time, not being able to do much, and just wanting to sleep. They drain a lot out of you, and with the already sick state I’m in, causes even more fatigue. When I was admitted through the er the doctor told me that when an episode happens to just relax. So I do breathing exercises, try to sleep sometimes, and watch something. I usually don’t do much when I’m sick, but this lowers my ability to and my motivation is already lacking.

Don’t get me started with motivation. I usually end up writing blog posts when I can’t sleep. I’ve been trying to draw more, both for me and my blog. It helps me relax and especially listening to music can calm me down. I’m trying to concentrate on colored pencil right now and to get better at that. I can’t draw for long, around an hour at most, without getting exhausted, but it’s good to be able to have a project to work on fir the next day.

I try to do the most I can in a day, even though I regret it a lot. Our pool is finally set up so I’ve been swimming in it with my sister and parents. Today my dad put mya, my dog, in it. It’s an above ground pool, unlike my cousins which we usually go to, so we had to physically lift her in and out of the pool. She still loved it though. My dads going to build her some steps so she can get up without difficulty. When we first introduce mya to a pool she didn’t go in for a while. We would lift her up and show he where the steps were in my cousins pool, u til one day she just jumped in. Now whenever she goes in she never want to get out, which is really cute. She looks like an otter when she swims.

Anyways I’m going to attempt to sleep, that’s all for now,

Bye.