A PICC Line is like a more permanent IV. They put it inside of me the same way they put in an IV: with a needle. However, my Mom and I had to wear caps and masks while they did it. The extra protection has something to do with preventing infection.
They took out the IV in my neck. Or was it a blood pressure monitor? Either way I’m glad it’s out. It’s not the most comfortable thing in the world.
They also replaced the gauze and tape covering my chest tube holes. It’s closing nicely.
A big thing: I transferred from ICU (Intensive Care Unit) to PCU (Patient Care Unit) today. The ICU is mainly where you stay if you’re in critical condition and need constant monitoring. The PCU is where you stay if you’re in better condition and have more privacy.
For me, the PCU is my transition phase between surgery and discharge from the hospital. I can’t wait to be discharged from the hospital (see May 15, 2018). Even though I won’t be going home immediately after, I still can’t wait to get discharged.
My English teacher visited me today. She’s my Honors English teacher. To be clear, she’s the English teacher that failed me.
So when I was picking classes in 8th grade I picked Honors English because honors (I wanted to be smart alright). I had NO idea I would’ve been in and out of the hospital for my entire Freshman year at High School. I was set back in her class, and she gave me a D. What kind of English teacher fails their student then visits them at the hospital?
She gave me cards that my class made for me. If I’m going to be honest, I don’t care about the cards at all. I know that the class just made it in fake kindness. They’ll feel bad for a moment, do their “kind” part, then move on.
Sorry, maybe I shouldn’t say that. I’m just so angry! I’m in all this pain everyday. I… I’m struggling to keep my sanity intact.
Maybe I don’t even deserve the cards. What have I done? Complain all day thinking the world was about me? What was I expecting?
Reality is harsh. Out of the 50 million people that could’ve had hypereosinophilia, it was ME. What awesome luck.
If it wasn’t because of that I could’ve had a way better life. I could’ve been a soccer player, been way taller than 5’3”, not had any blood draws in my entire life, and been normal. I COULD’VE BEEN AN ATHLETE!
They told me if I take this sleeping medication I would fall asleep. It’s 2 AM.
I should be happy with my heart transplant. Not everyone even gets this chance. But I’m not happy.
I want to end my pain. I did not expect this pain. At all.
I can’t sleep because I’m extremely hot. So hot I’m sweating.
I’m experiencing a hot and cold sensation. My circulation is crazy because of my new heart. When I lie down, I feel like I just entered the sauna. Then the heat just keeps on increasing until it’s unbearable. When I pull my blankets off me, I get super cold. It’s like I traveled from the sauna to an 5 AM freezing outdoor swimming pool.
Sitting up isn’t an easy task. I have to squeeze a pillow around my incision area, and do a crunch. Especially being so sore, it takes a lot of effort.
Even when I do catch a break with sleep, I keep getting woken up from the machines beeping, the nurse checking blood pressure, sudden need to use the restroom, and most often the unbearable heat.
At least when the sun is up I have things to do. I can eat, watch movies, talk to my Mom. and… well that’s it. I’m in too much pain to do any homework or work on anything else. I don’t have any video games to play, and the video games in my room are broken. But at least I have something to do!
In the hospital, time is against you. An hour is a day, a day is a month, and a month is a year. If I could somehow speed up time, I would.
At night I usually just stare into the darkness and think. I’ve been having a lot of dark thoughts from all the pain. I’m not suicidal, but I just want the pain to end.
Why me? Why did I have to get this heart transplant? Why did I have to get a heart transplant in the first place?
Was a heart transplant the right choice? I don’t think it is. My new heart is way worse than my old heart. What if I stay this way forever? Then what will happen? I can’t live like this.
Today I went outside for the first time since surgery.
At the PCU there’s a patio overlooking the hospital garden. I went outside to the patio.
It was nice breathing fresh air. The PCU smells because they have to sanitize it all the time. There’s always a smell of clorox bleach and hand sanitizers.
I also liked that it was warm. The PCU is always cold because they have to ensure no bacteria grows. Outside also is bright. Being inside all the time drains you.
I decided to eat my breakfast outside. I had some cheerios, sausage, milk, and hash browns. Even though there’s a lot of pain after transplant, I actually have more appetite. If this continues then I can get my G-tube out.
A G-tube is a tube that is placed through my stomach. I can insert nutrients and calories through it. That’s what I’ve been using for the past 15 years.
I’ve tried to get off the G-tube last year. That was a bad time to try because that’s when I contracted PLE (Protein Losing Enteropathy). Protein Losing Enteropathy is when your body doesn’t absorb the protein you eat. It’s a side effect of a failing heart. I lost a lot of weight during that time. The doctors forced me to get back on my tube feeding.
A biopsy is a procedure where they take a small machine that goes through your veins, and takes a piece of your tissue. For me, it’ll take a piece of my heart tissue. That way, the doctors can test my rejection.
The nurses put some “happy juice” inside of me. I instantly got high. I actually like this feeling! Then I went to sleep.
When I woke up there was band-aid over my incision area. I felt nothing during the procedure. I think it only took 15 minutes. I was told not to move for 2 hours. I was feeling really sweaty by the time that 2 hours was up. The reason was because of my hot and cold sensations; I feel extremely hot when I lie down.
I’ve resorted to watching tons of movies.
Today I’m watching Lord of the Rings.
My hot and cold sensations are so uncomfortable that I can’t even sit comfortably. I always have to adjust myself so that I don’t get sweaty.
I also keep hearing my heart pounding. It’s always THUMP, THUMP, THUMP, all the time. Even when I’m doing nothing!
I also can’t get any sleep. None. I’m doing nothing all day yet I can’t get any sleep. That sucks.
They stopped dripping medication for my kidneys. Instead, they’ll just insert medications throughout the day.
I can finally walk around without dragging that big stupid pole. Now I can walk outside my unit and downstairs. Walking is a lot more tiring dragging the pole around.
There was a festival today on the 3rd floor. For some reason, Tearaway, a video game, wants to advertise their product at a children’s hospital.
There was a PS4 demo, which was cool. With the PS4, they demonstrated VR. I couldn’t bend my neck around for the VR because of my neck staples. I don’t want to pull at them since they’re practically loose.
They gave me a water bottle, lunch box (like I’d be going to school soon. Ha!), and a blanket.
I watched Mission Impossible all day. I found that watching movies is a great way to distract from the pain.
At the Lucile Packard Stanford Children’s Hospital there’s a Family Resource Center, where you can rent movies and DVD players. I rented so many movies: The Lord of the Rings trilogy, The Captain America series, The Avengers series, Matilda, and Tom & Jerry. Now I’m moving onto the Mission Impossible series.
For my physical therapy, I walked downstairs to the cafeteria. I bought food at the cafeteria, and ate food outstairs. I can’t eat inside because I’m required to wear a mask in the hospital at all times. I don’t want to go back to my gloomy room and eat. I ate outside, but I’m not supposed to be outside, so I had to find creative ways to sit in the shade.
The night is horrible. I can’t sleep so I just stay up and stare into the wall.
Before I went to slept I talked to a nurse. She told me that it was normal for me to be sad. She took care of other heart transplant people and said they were sad after transplant too.
She told me all the sensations were normal. The heart pounding, hot and cold, and inability to sleep was normal. For the heart pounding my heart was adjusting to my new body. For my hot and cold sensations, my circulation is going crazy because my heart’s pumping abnormally.
Then why would the doctors not tell me about this in the transplant education? Last year, before I was put on the transplant list, I was educated about everything of transplant by a doctor. Yet they never said anything about heart pounding or hot and cold sensations.
I expected pain. I expected a giant cut down my chest. I expected being in the hospital for a long time. I did not expect my heart and pounding. I did not expect my hot and cold sensations. I did not expect an emotional rollercoaster.
The nurse told me about an orphan baby. An orphan had a heart transplant at this hospital. Since he had no parents to take care of him, she would cradle him in her breaks.
I can’t imagine being here without my Mom. Some children’s parents don’t stay with them at the hospital. What kind of parents do that? I couldn’t imagine choosing work over my child in the hospital.
Now I know that my sensations are normal. Then when does it start to go away?
Does the knowledge that my sensations are normal help me? Yes. I’ve been questioning whether transplant was right for me, so at least I know I’m not dying.
They told me I would leave the hospital today or tomorrow!
Finally! Staying in the hospital is horrible.
However, I wouldn’t leave to go home (which suacks). I would leave to the Ronald McDonald House. Yes, Ronald McDonald. Ronald McDonald of McDonald’s, the fast food chain.
McDonald’s has a charity that sets up housing near hospitals for families with their children in critical care. Hence, the Ronald McDonald House. There’s tons of them around the United States.
I am so glad I’m leaving. Every since day one of transplant, I’ve been dreaming of getting out of here. Pain is really, truly, honestly horrible. Is leaving the hospital going to get rid of my pain? Hopefully!
Today is also Mother’s Day. I’m gonna say my heart transplant was the biggest present for my Mom. When I was put on the transplant list, she had so much anxiety. She started taking pills. Thank God I was only on the list for 2 weeks!
Oky, so I’m not leaving today. I’ll leave tomorrow. That’s fine.
The doctor came in to talk to me about my staples. During rounds, I mentioned that before I left the hospital I want my staples taken out.
The doctor told me I would either have to wait until the next biopsy to take out my staples, or take them out now when I’m conscious.
I choose to take them out now.
They took a stapler remover, and used it on a human person. I’ll repeat, they used a STAPLER REMOVER. The staple removers you use to get out the staples in your homework packet, and used it on human flesh.
It was… painful.
What was surprising was no blood came out. The nurse gave me a hot pack to put over my chest.
Even though it was painful, I’m glad they took the staples out. I had a lot of anxiety over the staples because I was afraid that they would just pop out and my chest would just open.
Later in the day the nurses also took out my PICC line (see May 5, 2018). I think a PICC line is like an IV, but larger. Removing the tape made me really anxious, but it didn’t hurt to take out the PICC line. I hate my imagination.
The PICC line was at least a foot long! That was in me? That was in my veins? Oof.
Now all I have is my heart monitor. I ain’t got no tubes, poles, or even IVs. That’s awesome.