The A&R Journals: Hospital Diary’s Day #7-8

This is my schedule

Day #7

4pm; Treatments (picture wouldn’t work)

Day #8

Today I got my bronchial scope, I was really nervous but I got a relaxation med before I went back and it’s weird because I always rember everything so I remember going back into the OR and such but obviously for the procedure I was asleep. When I came back I just layed down, ate some cookies, and read. We just ordered dinner, also earlier at like 9:30am I went down for pt so I could do it before I went down. Originally the bronch was set for 12 but it got put back to 2:30 but around 1 I could be called back whenever and I actually went down around 1:30.

The A&R Journals: Hospital Diary’s #5-6

Day #5

Today I took a shower, went to pt, got pfts done, and painted. I have to take a shower every other day since I have a picc and don’t want to get infections and stuff. I hate showering with a picc though because I have to wrap it up since it can’t get wet. I got pfts at 4 and there down more. Since I have vocal cord disfunction sometimes they aren’t accurate. I started a painting that’s a landscape. I’m trying to take more time on my paintings and not push myself to finish a painting in one day since when I rush it ends up looking not as good as it could be. We also binge watched the office for the whole day and I hung up some drawings and paintings facing the outside of the window in my room so people that walk by can see it. We’re still trying to figure out when I’m going to get a bronchial scope done.

I went to pt at 1:30. It was fun. We used this ball that had different sides and each aide had a exercise on it. So we did that for a bit. Then we got these skateboard things that are a bit bigger and square. We sat on them and went up and down the hallway and then we used a jump rope while one of us sat on it and held the jumprope and the other one pulled the jump rope so we would pull each other up and down the hallway. All I can say is I’m going to be sore tomorrow.

Day #6

(I’m sore)

I started my day by waking up at 8. We set up a schedule where I get off screens at 10 and go to bed at 11 and wake up by 8. I did therapy, got meds, and got ready for the day. Then I ate lunch and got my blood drawn for an antibiotic level to make sure it’s not hurting my body since it can cause kidney and hearing issues. Then I went to pt where we went outside and ran up and down stairs, used a exercise band and did jumping jacks. It was a bit of a walk so we had that too. When I got back I painted for a while and called child life to ask for a paint color I needed and some games. We are watching my big fat American gypsy wedding. All I have to say is what the HECK! It’s weird and stupid and I don’t know why I’m still watching it but I guess entertaining to watch these people’s weird weddings. Right now I’m doing therapy and when I’m done I’m going to continue painting.

That’s all for now, bye.

The A&R Journals: Hospital Day #4-5


Day #4

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.

Day #5

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!


The A&R Journals: Hospital Day #2-3

Here’s a picture of my beautiful taco dog blanket

Day #2

So today was so fun. I was nauseous while doing therapy and then I was for half of the day. My nurse gave me Benadryl for it because the nausea medicine they could give me can cross interact with other meds I’m on. Also Benadryl makes me fall asleep so I kept going in and out of sleep. I was dry heaving for a couple minutes but I never actually threw up. It could be since I’m so backed up but I’m doing a clean out which is where you take a bunch of mirilax and laxatives. So for the whole day I’ve been hooked up through my gtube getting that. I’ve also been connected to iv fluids so I don’t get dehydrated while on the laxatives.

My nurse said that I was going to get my picc at 9. I got on my gown, got disconnected from everything and such but it turned out I wasn’t getting it today. So I’m getting it tomorrow at 8:30 or so. I also got pfts done today and they went down some which I expected. But I’m happy because my effort was good and I didn’t close off the back of my throat which I always do and when I do that it makes the numbers inaccurate.

I keep going up on the rate of my gtube pump which basically controls the amount of water or formula and how much goes into my stomach a hour. Right now I’m at 300ml/hour and I think I’m going to stay at that. I would be on it all night but since I’m NPO I can’t drink or eat anything after midnight but I am hooked up to iv fluids until I go down to the OR. Right now I’m watching the office (I mean let’s be honest, when am I not) and I was airing for repository to come in so I can do my last treatments.

So my iv blew. Why does this always happen. Oh ya I threw up…great night.

Day #3

So I got my picc. I got into the pre op room and waited for my sister to go back. She got the relaxation stuff which we always get before we go back since we have anxiety and anyone would be nervous for any procedure even if this is my sisters 5th picc and my 6th. Then it was my turn, we had turned on finding dory and I was laying with my mom and talking, I talk a lot when I’m nervous. And then I got the “loopy” stuff and headed off into the OR. I was already tired so with the loopy stuff I was about to fall asleep. I got hooked up to a bunch of stuff and put under. This time was weird because I had never woken up in the OR before, I always wake up after in a room. Though I think I feel back to sleep.

Afterwards I got back to my room, changed, used the bathroom and got my iv taken out. I also ordered food once the doctor changed my chart saying I wasn’t NPO anymore. For the clean out through my gtube I am currently at the highest rate which is 400ml/hour. It can make anyone nauseous so that’s why I was so nauseas yesterday and I probably will be later too but I’ll get something for it.

Anyways I’ll probably get a bronchial scope Tuesday or Wednesday because my cf doctor wants to do it and that’s when she has free time. I’ll also be getting a CT scan sometime around there too. I think I’m just going to be resting for the rest of the day since I’m still tired from anesthesia and I know I’m going to get nauseas again.

That’s all for now, bye!