On Saturday the 27th a friend of mine came up to see me just to hang out and catch up. It had been awhile between me being so sick and her being busy with her kids. It was really nice to catch up with her. We watched a few movies, had taco bell and just talked the whole day. I had a few coughing fits when she was there, but nothing too serious. Luckily it wasn't a bad day. Sunday was a little rougher and I needed to keep switching between the cannula and the mask for O2. Then Monday morning I was OK so I did my stuff and just took it easy. I waited for my dad to get out of work to take me into the hospital. By the time he got there I was starting to have a hard time breathing. I was so exhausted even though I did nothing. He took me into Children’s and headed home. I now wish he hadn't left so fast because this was the worse admittance I have ever had!I got there at 4:00 and I was already struggling, but no one seemed to care except my doctor. She came in to talk to me and I was having such a hard time breathing. All I could do was nod or shake my head to her questions. When I tried to talk she stopped me. She wanted me to save the little breathe I had. As my doctor is trying to talk to me the nurse's aide came in. He was getting vitals and making it impossible to communicate with my doctor. My doctor ended up stepping off to the side which I can't believe. I wanted her to tell him to come back. Seriously? He saw we were trying to get everything figured out. Common sense! He finally left and we were able to go over what we needed to. She then left to go get someone to set me up with high flow. That is oxygen that adds humidity and heat to the air and can go a lot higher than the traditional oxygen set up.
While I was waiting the nurse that was admitting me kept asking me questions. I was nodding or shaking my head, but she wasn't looking at me. I did answer her a couple times and it was obvious I was struggling, but I finally had to tell her one word at a time "I...will...nod..." she said OK and did that for rest of the questions. I was then hooked up with the high flow and attached to a pulse ox to see if I was remaining above 90. My doctor wanted them to keep an eye on it because of how much trouble I was having. Well they weren't keeping tabs on me and it quickly went down to 86. I had no idea how to adjust the setting on the machine. I had asked for help a few times with no luck so I ended up taking it off and going on regular flow. I was able to get my oxygen to 91, but I was far from comfortable. On top of that my nurse was absent except for the occasional "five more minutes and we will be in to access you," which lasted 2 hours. I wasn't accessed until after 6:30 and even that turned out to be a fight. The nurse who admitted me was new so she didn’t know how to access yet. So another nurse came in to do that. This is fine however he didn't want to bandage it the way I wanted him to. He insisted it could not be done the way I wanted it even though that is how I have it done every time I’ve come in. I finally said, "I can't breathe, I am tired, I am in a bad mood, I just want to lie down. Just put the stupid needle in my port and I will walk you through the bandage". He just looked at me dumbfounded and decided to proceed. Well at the very end he did not listen to me and did it wrong. Within two hours the tegaderm was lifted up and my port was exposed. Also I was in one of the small rooms so there was no air conditioner and it was so hot in there. I can't breathe when it is really warm in a room and I knew I would not be able to sleep. I asked my nurse to turn it down and she did, but it did not help much. Then after my port was accessed I decided to sit back and watch TV. This is when I found out the TV set was broken.
I was so exhausted and just could not fight with anyone so I called Jason in Florida and told him everything that was going on. He sounded pissed and said he had to go do something. I knew exactly what he was going to do… call the hospital. Well after about ten minutes things started going a little better. My night nurse came in and put some reinforcements on my bandage, a man came up to fix the TV and used a tool to turn the heat all the way down. A respiratory therapist came up asking what she could do for me. I told her everything that was going on with my breathing and she helped set up the high flow to my comfort. She also brought a vest in for me. I still had not been given a treatment and she was surprised by that. Of course the one she gave me ended up being broken, but I called her back in and she got me a new one right away. So most of the problems were taken care of and I just went to bed because I couldn't stay awake any longer. Monday night I slept horribly, but I expected it.
Tuesday was a bad day in the fact that I still could not breathe. There was a constant pain in my chest and my heart was beating so fast (151 bpm) it felt like it was going to jump out of my chest. To explain some of the pain...you know that feeling when you hold your breath for a long time? You start to feel that stabbing pain and you have to take a breath… I was feeling that all day. I wasn't able to make it go away no matter what I did. I had to cancel with PT because there was no way I was going to be able to do it.
I got an echocardiogram done for the transplant team. They came right in my room and did it while I was in bed. I love getting those because it is so cool to be able to see the heart like that. The results were good too. I have a healthy heart. I absolutely love when someone tells me something about me is healthy. It is such a nice change for me. Later that night Erica came over with a milkshake to lift my spirits after two bad days. It definitely did and I was able to have a conversation with her as long as I took it easy. It took her a long time to get to me. Every place she went to their milkshake machine was broken. What is going on this week? Lol Finally the last place said they could make one for her, but it would not be as thick as usual. Not sure what happened to make all the milkshake/ice cream machines to stop working, but damn, someone/something seriously hates me.
Wednesday I got PT in my room. I really wanted some therapy, but I was still too weak to go to the gym. I went down for PFT's that day too. Which were pretty bad. My FEV1 is now down to 18. The rest of that week was pretty boring. I was weak and tired and didn't do much at all. I really didn't feel any improvements until the next Tuesday. I was still tired and short of breath, but I was feeling a little better and I felt like I had more energy. I was able to talk to people with more energy behind my voice and I could feel everything moving in my lungs.
Nothing eventful occurred until Thursday night/Friday morning. I woke up to a coughing fit. I called for respiratory so I could have a treatment. While she was there I decided I wanted her to give me a little manual chest PT. I had some stuff stuck in my lungs and I wanted a little extra help to get it out. Well when she was done, she was not paying attention to where she was going. She bumped into a cup of water I had and spilled it all over my table. My laptop was on the other side of that same table. It got wet and long story short, it is fried! I was so upset! I still am. My computer is like a life line. It has everything on it. I always have small projects and things I do on the computer to keep me busy. It keeps me in touch with people and I do everything on it, including pay all my bills. I am lost without my computer and being at the hospital without one made it even worse. I was actually starting to get my energy back and feel like doing things. Instead my computer is gone and I wasn't able to do them. Child life brought me in a IPad to play with for awhile. Then I was able to get my mom's old laptop. This is just to hold me over till I get a new one. I am grateful to have something, but this computer is bad. For example, the sound is very low. I can barely hear people on Skype. Also the sound is not dubbed to any of the videos I try to watch. I can’t stand when the lips don’t match the voices. That is just one of many issues this computer has. I am making due though.
I got home on Monday so that is good news. I am now working with Children's on getting a new laptop. Hopefully I will have one by the end of this week.
I apologize for the negative blog full of complaints, but it has been a bad a couple of weeks. I am trying to remain strong and positive, but after this last admission...I am anything but happy right now. Hopefully the next time I am on I can talk about some good things that are happening. That would be nice. *fingers crossed*
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