Hospital Chronicles: 1
Posted on February 8, 2014
So it’s been an up and down hospital stay, just as they all are. I was airlifted here in the helicopter and put into the ICU. The only other time I had been in the ICU was for one night because they were initiating my bi-pap, which hospital policy states it needs to be done in the ICU, not because I was so sick that I needed to be there. Since this was the first time requiring to be in the ICU it kind of hit me exactly how sick I actually am. This was the sickest I have ever felt and been. I was staying at my aunt and uncle’s house because we are remodeling our kitchen and they were painting for a couple of days and the fumes weren’t particularly good for me to breathe in.
I was staying on a blow up mattress because their old guest room had been turned into a playroom filled with toys for their two year old daughter Tilly. Tilly would sit on the bed and then I would push her back so she would fall onto the mattress. She absolutely loved it, and would just giggle. Then she would sit back up and stare at me and say “no” (that’s her favorite word right now) until I did it again. Then I was tickling her and just playing with her, but then I would have to stop because I couldn’t breathe and I needed to cough. All I could think was how I wish I could run around with her and play with her like this all the time without needing to cough so much.
I woke up on a Saturday morning and just realized I was so sick I needed to be admitted. You can read all about it in the blog “Crazy Admission” or click here.
I was in the ICU for a couple of days. I had a commode and no shower… I didn’t even have any toilet paper. A family friend of ours who used to be a chaplain at my old hospital came to visit me and stayed in town for about four days. He is a great guy, and is very funny and charismatic. He would joke around with me, and basically just keep me in a good mood. I finally got out of the ICU but there was no room in the section of the hospital where the CFers usually go, so I had to be put in the cardiac section of the hospital. Once we kind of got settled in and used to the room, they came in and told me that one of their cardiac transplant patients was coming in so they needed the room. They then moved me into the surgical section of the hospital.
That week my doctor came in and told me that I was officially on the list. The way the doctor rotation works is when I go to clinic I always see the same doctor and only that doctor, and that is my main doctor who is in control of all of my orders. When I come into the hospital they have a different attending doctor every week. Sometimes it’s my main doctor and sometimes it’s not. When I was admitted it was her, and she was the one who told me I was officially on the list. There has kind of been this problem with her giving me a million rules to follow, and since I am not afraid to voice my opinion and speak up for myself, she has this thought that I don’t want to be compliant and follow her rules. That is not true, I follow every rule she gives me, and I go above and beyond, but I’m not exactly sure that she believes me. That is why when she came in to tell me I was on the list, she said that she didn’t exactly feel that great about it. Ugh…
The next week rolled around and she went on vacation for a couple of weeks. Right now the attending doctor is the head of Pulmonology, and is technically her boss. He is a nice guy, and I really like him. He seems to care more about what I need and what I have to say… for the most part.
Currently, my biggest problems during this stay are sleep, pain and itching. I am getting pain medicine scheduled, and as needed, so that’s good. I am getting Melatonin, and was supposed to get Ambien last night, but for some reason they wouldn’t give it to me until tonight so we’ll see how that goes. The biggest issue is my itching. I am on a medicine that makes me really itchy, like I am slightly allergic to it. The problem is that I am not allergic to it to the point that I could go into anaphylactic shock and die, but it’s bad enough that the itching is extreme and doesn’t go away. Also, thee med still does what it needs to do for me so they still give it to me. They usually give me Benadryl to help, which usually works, but only in IV form. The PO form (oral/pill) makes me groggy (not sleepy, I wish it was sleepy because then maybe I could sleep) and just in a haze and I don’t like that. It doesn’t help my itch either. The IV form helps my itch, works faster and doesn’t make me groggy. For some reason though, they won’t give it to me. It’s pretty annoying considering my itching is so bad that last night I was bleeding all over my bed and clothes from scratching to much, and my dad helped me put Benadryl cream on me, and it burned so bad!
So there has just been a lot going on during this stay. Not too long after they moved me into the surgical unit, right when we were getting used to the room, they came back in and said that they wanted to move me into a negative pressure isolation room to keep me healthy. So I have just moved and bounced around from room to room. Today is the two week mark for how long I have been here, and I will probably be here for another week. Next week they are starting me on a super high dose of a steroid burst.
When I was younger I was on like 80 mg everyday for a year. I had a smaller burst when I went to my old hospital, which was 60 mg every six hours, and I thought that was a lot. They are going to put me on 600 mg of solumedrol. That is an INSANELY huge amount. It will make me anxious as hell, very cranky, and give me little chipmunk cheeks. So hopefully things will get better soon, but I doubt it.
Sorry for the long and rather boring post. I probably ranted a bit. This marks the beginning of the Hospital Chronicles. Thanks everybody.
–Elizabeth M. (: