I tend to be really bad at updating when sick/in the hospital and I'm not really sure why. It seems like I'd be writing more since I have absolutely NOTHING going on. Soooo..here we go.
June 3rd: Holy moly. Graduation day.
It didn't even feel like I expected. Truthfully, I just wanted it to be done and over with so I could go home and sleep. My lungs hurt worse than they had since I started getting sick again. I wasn't nervous, over-joyed, or highly excited. I was exhausted...my whole body was. I didn't want to cry for the same reasons as everyone else...I wanted to cry because of how awful I felt. I know I may sound somewhat melo-dramatic a bit, but come on now...it was my graduation day! I was hoping that maybe I would be lucky and at least feel a tad better than what I had been, but nope...my whole body went against me and did the complete opposite.
Okay, okay, so aside from all of that, I do have something positive to say...Ilene and her dad were able to make it to my graduation!! I didn't see her until after the whole ceremony, but when I did, ahhhh, it was amazing. We kept hugging eachother while knowing that the next time we were able to, would probably be in the hospital. Afterwards, they both came over to my house for about an hour while we sat around with my family and just had a good time. Hannah sent me a text saying that she was going to surprise me and show up at my graduation, but couldn't make it because she had to play in the band at her schools graduation. Bummer, bummer, bummer! It would have made the day 10x more better! Me, Ilene, and Hannah reunited again! Without doctors, residents, or nurses bickering at us.
Speaking of which..
June 4th: I had been dreading this day, but at the same time, I was wishing for it more and more. I was 98% sure that I would be getting admitted, so of course, I packed a bag. While packing, Kayla come over and brought me lunch. My energy level was so bad that I had to have my grandpa take me to my appointment. I had lost 6 pounds, which I knew because I had been keeping track, and my PFTs (lung functions) dropped from the 55% at my last appointment a month prior, to 31%. Bam! It hit me hard. I wasn't expecting them to have dropped that low. I actually told a couple people that were a bit higher than that.
On my way to the hospital!
Here's a quick list of how my stay went. (Lists are much easier)
Day 1: Vitals weren't to bad. Blood pressure was almost perfect, no fevers, and my O2 was 93, which isn't the best, but it's not the worst. I was given some oxygen because they prefer it to be above 95. I was started on my regular course of IV antibiotics. I talked to a handful of residents and nurses about my current medication list, any changes, what brought me in, how I was feeling, ect. ect... Overnight things got worse. My O2 wouldn't go above 86, and well, my lungs weren't to happy with that. I only got about an hour of sleep.
Day 2: Ilene also got admitted. I had PFTs and they dropped to 28%. I was supposed to start doing the NG tube again, but I needed the oxygen at night, so I was told to drink two boosts to help gain weight.
Day 3/4: 02 stayed below 92, and it dropped rather low at night and in the morning, but that's to be expected, so I was on continous oxygen. Ilenes 15th birthday; me and my mom got her 15 purple star balloons. :)
Day 5: O2 finally started to stay above 93 without oxygen and improved more and more through-out the day. I eventually could go several hours without needing it. Gained three pounds.
Day 6: Left my room for the first time other than PFTs and went on an LOA (leave of absence) with my mom. (LOA is where you're allowed to leave the hospital in between treatments and IV's.) Went shopping and out to lunch. When I came back, my O2 was above 94, which is a really good sign!
Day 7: Ilenes birthday party! One of the doctors allowed me to go as long as we wore a mask and stayed a reasonable distance away from eachother. Went on another LOA. Weight was down two pounds.
Day 8: PFTs went up to 50%!! Hadn't needed oxygen for a couple days. Ilenes PFTs went from 47% to 58% which is crazy!!! Hers haven't been that high in...I don't even know how long.
Day 9: Lost another pound
Day 11: Came home!!!
I'm currently on home IV's and have an appointment on Monday to figure out when, and if, I can stop them.
How I'm feeling physcially: Exhausted. Tired. Sore. Breathless. Sick. Yup. I don't know if maybe...hopefully...it has something to do with the heat. It has been in the 90's all week and it's brutual for my body. I'm trying to stay inside as much as possible.
How I'm feeling mentally: On and off. At moments, I feel like I could take on the world, and then instantly, I begin to feel lost and weak.
A couple days after I got home from the hospital, I noticed something new...and scary. My lungs feel weaker. My PFTs did go back up, not completely, but close enough, but I feel as if my lungs have weakened. It's really hard to describe, but it's terrifying to me. My body can only handle so much antibiotics, sickness, and scarring. I almost mentioned something to my mom, but I've been kind of weary about saying certain things ever since a conversation we had the day before I came home..here's how it went.
But first, some background info; My mom prefers that I stay in the hospital during my whole course of IV antibiotics because it's safer and more efficient. My normal course is roughly about 3-4 weeks.
Me: Doctor said tomorrow is the day!
Mom: Ok. I had a feeling that would happen.
Me: Uhh okay. I feel like sometimes I can't be happy about coming home
Mom: Be happy. It is what it is
Me: I cant be happy if you're going to be upset.
Mom: It's not that I'm upset or that I'd rather have you there...It's because I'd rather have you well. You're going to come home and start feeling bad and it makes me feel helpless.
Annndd that's why I haven't exactly talked to my mom about how I'm feeling. I know that it would hurt her to hear that I'm not feeling good already. I used to be really upset when my mom would mention that I should stay a bit longer, but now I understand her reasoning for it. And she's right..I do start getting sick almost right after being discharged, but at the same time, it's not like I can stay in the hospital forever.
Some exciting news: This past Sunday I got to see one of my favorite people, Kim! She's Josh's mom, the one who recieved his double lung transplant. She completely surprised me! She stopped by my house the night before, but I was at the movies so I wasn't able to see her. She didn't tell me that she was coming the next day, but she did!!
I haven't been to counseling since before I went in the hospital and I really feel like I need to go. Actually, I did have an appointment today, but my brother had to get surgery on his thumb (box cutter accident) and he had to be at the hospital the same time as my appointment. My mom wouldn't be able to be at the hospital until after work and no one else could take him, so I had to cancel my appointment. Turns out that my stepdad decided to take a vacation day which meant that I didn't need to take him. I called to reschedule an appointment and they didn't have one until next Wednesday.
Well...I think that about sums it all up.
I'm really going to try and post more. I write, but I don't ever post much of it. I need to post more than just updates. I want it to be more consistant and personal. Poems, current thoughts, rants, inspiration.
Here's some pictures to go along with everything.