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Just a quick post, updating you. I did get discharged last night and am home with my dog. Luckily I was able to go home on IV antibiotics for two weeks along with having to do vest treatments 4 times daily.

Hopefully Ill start posting more soon!

Hospital Days #15

Its been a bit.

Since I switched over to the cefepime and toby, i’ve felt a little better. The past couple days the doctors were thinking I would be able to go home but my antibiotic levels for tobramycin were high so it was delayed a couple of days.

The normal levels are around 5-10, but mine were around 20. It took a little adjusting of the medication, but now i’m on the right dose and my levels are normal.

Anyways, I’m hoping to get back into blogging and art once my course of antibiotics is over. I’m doing one more week at home so I get two weeks in total of the new medication, but at least I can finish at home.

Thats all for now,

bye.

Hospital Days #8

Lots been going on. So i’m not feeling better and my pfts went down. They decided to change my antibiotics after talking to my main pulmonologist so now i’m on toby and cefepime.

My sister was able to get discharged today which is good since her pfts were up and she was feeling better.

Lately ive been playing a lot if sims and watching the office.

Thats all for now,

bye.

Hospital Days #4

If you can’t tell, i’m not planning on uploading these posts daily. It can get repetitive very quickly so as not to bore you, I won’t be doing that.

It’s my fourth day in the hospital(I think). My picc procedure went well and it’s nice not having an iv in my arm anymore. I am worried because they had a lot of difficulty finding a vein.

I got poked twice before the nurse decided to get an ultrasound and find a vein that way. Even with it though, it almost didn’t work. She had to move it in and out a lot.

Anyways I’ve just been getting into the habit of things. I have therapy(vest) every four hours at eight, twelve, and four. my antibiotic is every eight so I roughly have something every two hours.

I got pfts today and they went down significantly. Considering when I got admitted they were around average, it makes sense. I did not close off the back of my throat so the numbers are reliable which I’m happy about.

Beside listening to Pan!c at the disco(house of memories)I’m not doing much but I’m hoping to know soon whether or not I’m staying for two weeks. I have drivers ed coming up in the beginning of March so I doubt things will fit in well but 🤞.

That’s all for now,

-Annabelle

Hospital Days #1


I went to my hospital around two today, just to get pfts. My doctor wasn’t on call so my mom spoke to the attending instead and made the decision to do the pulmonary test. Just in preparation, I packed a small bag and essentials just in case I was admitted.

My pfts were around the same. My FEV1 was around 80s and FVC the same. The respiratory therapist that did our PFTS called our main pulmonologist and we decided that after two antibiotics and steroids it was time to get admitted.

My sister, Mom, and I went to Michales and Cold-stone until we got a call that our rooms were ready.

We’re on a different wing so it’s much more quiet. Compared to our normal spot, there aren’t any crying babies and it’s more secluded so that’s a plus.

I’m hoping to get a picc line tommrow, NPO at midnight and I just got back fro X-rays.

-Annabelle

Clinic 1/10/20

I got here at around 9:30ish. I was going to have an equipment check, which happens once a year. It’s exactly what it sounds like. I bring my vest and such, make sure the settings are good and I’m using it right.

My mom is sick so she canceled it since the appointment was set for 8:30 in the morning.

Once I reached the floor for clinic we checked in and waited. After taking weight, height, and vitals, I went into pfts. Like the equipment check, with cf you do what is called a full once a year.

My FVC was 80, and FEV1 was 85. I’ve been having breathing problems and currently have a lung infection so it’s kind of a baseline for those standards.

I checked medication, treatments and symptoms, saw my dietitian, the nurses, pulmonary therapist, and also got a throat culture done. With my dietitian I did a grip strength test, which was under the 50th percentile so I had to talk to a physical therapist.


My doctor came in and all is well. Even though I don’t feel well, I might have gotten a cold from my parents but I think I have a lung infection. Afterward I went to applebee’s for lunch and went to michaels and got a new kneaded eraser.

Thats all for now,

bye.

Hospital Diaries #10-11

Yesterday I had pfts. My FEV1 was down from 93 to 79, and FVC was down from 84 to 72. My doctors and I think it’s hopefully because I had the bronc the previous day. I’m getting new pfts on monday or tuesday so well know by then whether or not it should be concerning.

I had my weekly labs taken and went down to PT. Luckily it’s not on weekends so I can just chill for a couple days now.

Today, Saturday, my Mom and Sister brought my dog up. I took a leave on pass from 1-4pm, so in between my 12 and 4 o’clock therapy. We walked around a garden that’s on campus and then drove to a store and got some gum and chocolate.

Now i’m writing this. I drew a little, working on a new mandala piece and played some minecraft. Probably going to go home tuesday or wednesday which I’m excited for.

That’s all for now,

bye.

Hospital Diaries #9

I woke up nervously. I had a bronchoscopy today. I ended up being put on call, which meant that I would go down earlier than scheduled. Heading down around 11 instead of 12, I got vitals and answered all the questions.

Luckily I didn’t have to change into a gown down in the Pre-op room, having already changed in my room. I needed to do a treatment since I have therapy at 12, so they had me do albuterol through a nebulizers, which is always fun since it makes me extremely shaky.

The anesthesiologists came in, gave me some relaxing medicine through my picc and rolled me down to the operating room.

Waking up was difficult since they gave me more anesthesia than they do when I get a picc. The procedure went fine, nothing but inflammation. They took biopsy’s and are testing it.

Yesterday I had my dressing changed on my picc. It had bled more on top of the already dried blood. I have skin breakage underneath so they put medapore dressing on it, which is like gauze.

The downside is that I have to get it changed every other day, but that’s not really a problem for me. I like when I get it changed because then it exposes the skin to air.

From the skin breakage there is redness and basically skin breakage. It can get infected and such easier.

I’m working on another mandala and I’m hoping I can see my dog this weekend if my dad or mom can bring her up.

That’s all for now,

Bye.

Hospital Diaries #6

Tried to do school today. Worked a little but eventually I gave up as people kept coming in and out of my room and I was getting super anxious and stressed.

Child life left this on my door:

Which is truly amazing.

Tomorrow I have a CT scan at 1, and Thursday I have my bronc. There’s not a time yet though. I had pfts today, they were the same as last time. My numbers are actually really good, I think my FEV1 was at 90, but despite that I’m still having issues breathing.

I keep getting crappy sleep. Having vitals every six hours makes my night look like this:

11:30-12pm- vitals

2ish- antibiotic

5:30-6am- t-com check and another set of vitals

8- Therapy #1

So overall, not good. The t-com is checking my carbon dioxide levels. I have hyperventilation when I sleep and I’m supposed to wear a bipap but I can’t sleep with it on. I’ve tried several masks, had two sleep studies, attempted actually sleeping with it on, but no luck.

The normal level for it is low 40s. The past few days mine have been generally around 45-48 but today it was 50.

My morning afternoon schedule is like this, generally:

Physical therapy(sometimes morning, sometimes early afternoon)

9-10- Meds

10ish-Rounds

12-therapy #2

4pm- therapy #3

6pm- antibiotic

8pm- therapy #4

Anyways that’s all for now,

Bye.

Hospital Diaries- Day #5

In technicality it is day 4 of antibiotics but I’ve been here for 5 days.

To be honest, today was relaxing. As always sleep is a struggle but that’s besides the point. After my first treatment at 8, I watched a couple movies with my mom while reading.

I ended up finishing The Mark of Athena, the third book in The Heros of Olympus series. Read almost 200 pages and it was awesome. Now I’m on page 40 of House of Hades.

Yesterday I got $30 from doing a Picc study. I got Sims 4 Realm of Magic game pack and have been obsessing over it for the past day or so. Switching back and fourth between that and Minecraft, which made my game crash.

Now on my survival world there are random chunks of mountains near the spawn point. TNT is my friend for this occasion. It might sound cool, you know mountains and such, but it’s more like large 15×15 square chunks of land.

I tried working on school later in the day, Chemistry specifically. For my online school I can get ahead of pace, so from preparing for admission I am still ahead of pace in 4 of my 7 classes, being on pace in 3.

So in the grand scheme of things, not bad but I’d rather be ahead of pace escpecially so I can take a day off for my bronchoscopy.

That’s all for now,

Bye.