Today I got pfts and a cat scan done of my lungs. My pfts were down and I haven’t heard about the ct scan yet. I got a ct scan of my lungs since my doctor wants to try and find what’s causing me to be sick so often. I already got a bronch done and all they saw was inflammation. In pt I went on the treadmill for 10 minutes as a warm up. Then we did a bunch of things like jumping jacks and mountain climbers. Then we skipped back to the room as a little race. Annabelle got some fabric to make a tie blanket like I have. She got a really soft fabric for the first layer and then a fabric that wasn’t so soft and has a pattern on it. Mine are taco dogs, Annabelles is flowers. We went on a walk and got some food. We got breadsticks from the cafe on the 2nd floor that’s close to the elevators. Then we went to the vending machines and got pirates booty and a rice crispy treat. We ate it in the courtyard that’s right there.
I painted more on these wood block things I got the other day and I actually used them all. I’ll post some of them soon. When I was painting we watched read player one again because we only rented it. Me and my sister started watching a show called arrested development and it’s funny, but not as funny as the office. My dad recommended it to us because we’ve probably watched the office over again 5 times and we wanted to watch scrubs but it’s not on Netflix anymore.
I woke up at 6:30 because a neurologist was going to come in and do a evaluation type of thing since I have hyperventilation when I sleep which is basically where I don’t breathe out all the way so I have to much CO in my body so I have to get a bipap machine to wear at night. Anyways the reason that doctor came was to see if there was a reason why but she didn’t find anything abnormal. Ell’s gtube and bronch is today. I went down with her which was around 6:40. Is was for 7:30 which is around where she actually went into the operating room but they said it moved to 9 but it wasn’t. She back there right now and I’m doing therapy for the first time today. I’m really tired because surprise surprise I got crap sleep but we’re getting discharged tomorrow! I’m happy and I’m probably going to start packing up. I’ll update when the doctors come around for rounds and later after I do pt.
Rounds came in and nothings new. Annabelles out and I got meds. I’ll probably go on a walk later and bring Annabelle with me since when I got my gtube I walked around but not to much. I had to have stuff on my legs since I wasn’t walking around since I was in pain. She’ll need to be hooked up to feed sthe rest of the day so she can do it tonight. She goes up every 10ml every hour for the rate to make sure she can tolerate the feeds.
Anyways that’s all for now, bye!
Not much happened today. Me, Annabelle, and my mom binge watched say yes to the dress. At home we don’t have cable so we’ve only watched the show at our friends house. We just watched it and I read some wattpad, my mom read on her kindle and Annabelle played sims which is so surprising. We went on a walk and got some candy from the gift shop. We started walking further but me and Annabelle were both having some breathing problems so we headed back to our rooms. Other than those “highlights” of my day we just went on with our normal schedule.
So today there’s a car show at my hospital. They do this once a year where some cars like a monster truck and a transformers truck go to the front of the hospital and a bunch of other cars go on top of a parking garage. Since we can’ go to the roof of a parking garage since we have cf we just went to a window where we could see the parking garage and then we went down to the front of the hospital. Then we sat in a garden thing on the main floor and talked for a while.
It’s weird to be here while the car shows going on again because last year we were here for it too. We get bags from it that has a bunch of stuff in it but since were not really into cars we put them in gift baskets and auction them off at our gold outing we have once a year for cf.
I got my dressing changed which is always fun. I also have been painting. I finished painting a painting that I wasn’t done with but I think I uploaded a picture of it before it was done, I’m not sure. I also started painting a landscape of the view from my room window. I just have watercolor since its small and easy to pack but my moms bringing my acrylics and some canvases tonight so I’m planning on working on some really detailed paintings to keep myself occupied.
That’s all for now, bye!
(Cute cats from a cat cafe I went to during my last admission)
So I can’t sleep… shocker I know! I don’t get good sleep and I have a lot of problems falling asleep. I did get a sleep study done and I have some breathing issue but I’m getting it sorted out. Anyways since I’m sick my sleep is like 10x worse. Sometimes I’ll be up anywhere from 2 til 5am, yes 5 freaking am, as in the morning! And then I’ll sleep til 1pm. I can’t sleep because of my breathing issues and just the overall uncomfortableness in my lungs, I’m guessing from all the mucus.
Anyways as you can tell I can’t sleep. And the reason this time being breathing problems. I am taking my inhaler even though it never helps but mine as well try it… again. I’m taking 4 puffs instead of 2 so maybe it will help, probably not. I hate taking 4 puffs though because it makes my hands shaky and I can’t sit still. I’ve been on a antibiotic for my lung infection for over a week and have also been put on a steroid. My last admission was in the beginning of June so it’s only been a month or so since this happened last. I went to clinic last week and my pfts were ok, my doctor said they weren’t where she wanted them but it’s not like I needed to be admitted right then and there.
Anyways I am aware that this post I all over the place but that’s kind of the point of my late night thoughts writings is just small updates about my health and art and other random stuff. I’m being homeschooled this year. Me and my sister have wanted to be homeschooled since 7th grade which is the time our health started to go downhill. It’s too much for us to miss so much school and have to make up so much work and it just adds to anxiety. I’m actually pretty excited because I can do more art stuff and maybe even grow me and my sisters YouTube channel and start posting stuff regularly and I also want to start uploading to my blog more. For my electives, and yes there is electives for online school, I want to do some art and take a veterinarian science class. When I’m older I want to do something with animals or art as my career but I still have some time to decide but even if I chose one I would still do the other one. When I’m old enough I want to volunteer at pet shelters and foster animals.
So as I’m typing this it’s Sunday night, we’ll really Monday morning, “I’m” (aka my mom) is going to call my hospital “today” or Tuesday. I’ll of course give updates and if I get admitted I’m going to try to do art posts still but I will still do hospital diaries. But I might change it up a bit so I will continue to record my health even after I’m discharged since I think I’m going to go back to staying in the hospital a week and doing two weeks of antibiotics at home. I would talk about my day, my antibiotic schedule, getting blood draws and just overall my life of when I’m sick. Maybe I can call it the Brianna Diaries? Bri Diaries? The Salty Life Journeys/ journal/ diaries? Something with A&R in it? I don’t know give me some suggestions in the comments.
That’s all for now bye…
-A&R (art and roses)🌹
Me, my sister, and friwnd had a picnic at 8-9:30 at night and watched the sunset, here is a picture…