Going Crazy..... HELP!!!

I have been cooped up for I don't know how long. I really need to get out. I just don't have anything I can really go do. I have to stay close to home because I have got to be drinking something non stop. The best thing I have found to drink is Skim milk. Yes I like Skim. I think it helps that I was grown up on the stuff so "actual milk" is to creamy. But anyway, with this weather I can't very well take milk out and keep it cold or keep it from growing crazy things. Yet if I don't constantly drink the stuff then my stomach gets quite upset with me. I guess it has something to do with the feeding tube and trying to get all the nutrients that gives.

Can't go out and excercise. I need to loose weight, but with the malnutrition I have just gone through my doctor has told me he does not want me loosing weight. Which is a problem because the weight falls off me when I sleep. I go to bed and wake up 2-3 lbs lighter. Which isn't necessarily a bad thing most the time. Just not good for me now. So excercise is out. The heat drains what little energy I have. So going outside during the day is also out.

So I sit inside on the computer playing games or doing facebook. I have found myself to get quite cranky with facebook when it acts up. Which is most the time. So I find myself also watching movies. I would like to start reading again, but I don't know of many good books. Not to mention I checked some out during my first surgery and forgot about them until the other day. So my fine at the library is probably out of this world.

So I guess I am looking for some kind of suggestions to do that could be fun. Something on the computer other than facebook. Or a book to read or good movie to see. The movies I have are getting a little old.

I should only have a week left of this then I will probably be going back to work. I am looking forward to actually doing something with myself. Yet I am also scared to go back because right now I have access to anything whenever I need it. My blood sugar will drop way low and I find myself needing to eat something. Or my tummy will get mad and I find myself needing to put something in it. When you work you don't get those options. Not to mention I have been sick so long and worry about getting sick again when I am not concentrating on my body and its needs. Lets face it when you work you get sucked in and get so busy that your needs come second. At least that is how it has been in the past. In the past I could get away with it. Now I am not so sure. So yes going back to work scares me pretty badly.

But I digress. Books, movies, activities, anything that I could do, that you find fun. Please tell me. I am in need of a distraction, anything, to do.

Oh What a Night

I am finally home, well at my moms.

It was quite the challenge to get out of the hospital.

(Warning the blog you are about to read is extremely long. Sorry in advance. )

The night before

10PM-- the nurse came in and checked my blood sugar. It was 293. I was like holy crap when I came in here it was 85 (normal). Why now is it so dang high? They weren't sure exactly, but they believed it had to do with the tube feeds. The nurse said I would be in the hospital until they could get a hold of my doctor. He may decide not to let me go home. I was about ready to cry. Brandon was there and calmed me down a little before he went home to get some sleep.

11:30PM--They gave me some insulin (that is how quick they were) and told me they would check on me a little later. They were worried that my blood sugar would drop to low and I would go into a coma because I had never had insulin before and they were unsure of how I would respond to it.

1AM-- they woke me so I could take the medicine for my ulcer. 11:30 was to soon to give it to
me yet by 1 they were giving it to me late, go figure.

2AM-- woke me to test my blood sugar again. It was 275.

3AM--another shot of insulin. I was unable to go back to bed. I was so sure that they would keep me. I called Brandon talked to him for a few before he had to get ready for work. I was getting to be a very agitated patient. After talking to him I calmed down a little and fell back asleep.

5AM-- lab tech woke me for some more blood tests. Being poked in the foot is a lot worse than the hand by the way. Extremely tender.

5:30-- respiratory therapist came in made me do some breathing treatments. Was falling asleep during the treatment and kept being told to open my eyes.

5:45-- done with treatments. Start falling asleep again, but nurse comes in for another blood test. Blood sugar 251.

6AM-- More insulin and other meds

7AM-- machines start beeping and going crazy. I called for the nurse, noticed the time and swore to myself. Go figure everything goes out at shift change. Aide comes in notices the beeping and says I will send the nurse in as soon as they are done on report.

7:05-- machines beep again. I put them on mute no nurse yet.

7:30-- got tired of the machines beeping at me every 5 minutes so I turned them off myself.

7:35-- a different machine goes off. I look and notice that the food they were giving me through my tube ran out. I turned that machine off too and went back to bed.

8:15-- Night nurse finally comes in and checks my machines. She was upset with me because I had turned them off. I opened my eyes and just looked at her and thought oh well. I told her I hadn't slept all night I am tired and it was shift change so I couldn't get any help. She replaces the IV bag and the tube feed. FINALLY SLEEP!

WRONG

8:45-- Day nurse finally comes in and introduces herself. She checks my blood sugar. Not sure what it was this time. I really didn't care I just wanted to be left alone to sleep. I was so tired. She tells me I need to get up and walk around. I looked at her and laughed. I figured at this point I would not be sleeping any time soon so got onto the computer. Was on there for a little while before I couldn't take it anymore and went to bed

10AM-- couldn't have been asleep for very long and Brandon shows up. Came by during his break to see how I was doing. We both started to fall asleep shortly after that.

10:10-- woken up again for another breathing treatment. Started falling asleep again, this time I don't remember finishing the treatment.

1PM-- Finally more than just a few minutes of sleep before I was woken up again. Another poke to test my blood sugar, some insulin and my doctor shows up. He tells me my levels are still high, but he is confident to send me home. I will need home health care for the diabetes and feeding tube set up before I can leave. By this time I have completely given up on sleep. My mom shows up and I finally get a shower. The nurse asked me what my needs were earlier and I told her SHOWER. Brandon left to go back to work shortly after that.

3PM-- Social worker comes in and says they are trying to get my insurance to send home health out to me. They have to get that going before I can leave or else I will have to stay in the hospital.

3:30-- Still no luck with insurance, starting to think that I was going to have to stay

3:45-- social worker said that insurance would have someone out to the house in an hour and I could go home. Got into a wheelchair and left the hospital. ABOUT TIME!

Finally home

4:50PM-- on my way to my moms. I am so thrilled to be out of the hospital, but we haven't heard from the home health people. It had been over an hour and we hadn't gotten a phone call letting us know they were on their way out. They were supposed to call before they left and they were supposed to be at her home within the hour. My mom calls them and they tell her that they will send someone out first thing in the morning. Not acceptable. She told them I was supposed to be on a constant feed and they needed to get out there right away. If they don't get there tonight I would end up having to go back into the hospital. The lady told her to call back in an hour.

5:50PM-- My mom calls back to the home health people. They told her again that they would have someone out first thing in the morning. This time she got really mad at the lady and told her no they need to get someone out here tonight. I have been off my feedings for to long already. Again they tell her to call back in an hour.

6:05PM-- I call the home health people to check there hours. Get the answering machine. They close at 6. I wasn't very happy. The stupid *****!!!! She didn't want to deal with it so she says to call back knowing full well that they would be closed. We got an on call answering machine and left a message for them to call back.

7PM-- no call. We call and leave another message

8PM-- still no call. We leave another message this time we weren't so nice.

8:30-- we get a call from a different company saying that they just received orders to come out tonight at 7:30. My insurance company got the orders to send someone out at 3:30 It took them 4 hours to contact someone. The home health people said they would be out in an hour.

9:30PM-- haven't seen anyone yet.

10:00PM-- finally the guy shows up. But because he didn't have the orders or the resources he was unable to get everything I needed. And what he was able to get wasn't the right stuff. But it would have to do. Finally get everything hooked up I start the feeds and try to go to bed. I was extremely tired. But because the feeding stuff wasn't right it didn't sit well with my system. I was up that night every 1.5 hours going to the bathroom.

Friday- after surviving the night we were supposed to have a nurse come first thing in the morning with the correct feed for my tube. Someone finally shows up later that evening. But they didn't have the correct formula. We called the home health people and they apologized and they said they would send it out Saturday delivery. We get the formula and there are about 5 boxes. Heavy boxes no less. So because the insurance company and the home health people kept screwing up they had to send by UPS 5 boxes full of canned formula for my feeding tube Saturday AM delivery. Guess who gets to pay for that? I know the insurance wont be covering all of it. Can't wait for that bill. Not very happy about it.

In the week that I have been home the feeding tube has clogged 4 times. The last time it clogged was about 6 AM Wed morning. My mom and I tried for 2 hours to unclog it. Some stuff came out, but not much. Nothing was working. I was extremely frustrated. I had just flushed the thing at midnight. We even flushed it with coke because that helps with clogs and I was worried that it was getting harder and harder to flush. So we flushed with coke and several times with water. I had been hooked up to it ever since. Yet it still clogged. We called the doctor because we didn't know what else to do. Waited for him to call back and fell asleep. Woke up a little later and called the doctor again. Left another message. Still no call back. Tried to unclog again for an hour and nothing helped. Took the tape off my face and pulled the damn thing out. That wasn't a pleasant feeling. Inspected the tube and the last 5 inches of tube was completely clogged. There was no chance of us ever getting it unclogged. So now I am tube free and it is a curse and a blessing at the same time. I am not irritated by the tube yet I am not feeling as well as I was when I was on it. Now I am not getting the nutrients I need. Got to find some way to correct that because I don't want to go back in to the hospital.

There are many more hospital stories that I have, but this has been long enough. Maybe I will get around to posting them later.

Still here

It has been 10 nights going on 11 days and I still have not been able to go home.

The DR was supposed to release me Monday morning sometime. He wrote my release papers

where they said patient will be going home with (medical word for feeding tube.) But he forgot to write the orders for the feeding tube. So they could not send me home. Which turned out to be a blessing in disguise.

Monday was a good day. I was not sick at all and I honestly thought that I was getting better. I was nervous about going home and possibly getting sick again. Anyway, Monday night was not as nice. I started to get sick again and was in extreme pain. This was new to me as I hadn't been in pain before. I was just extremely sick. So the pain took me by complete surprise. When I explained it to my nurse she was surprised too. I tried to walk around to see if it was just gas, but that didn't seem to help anything.

Finally about 5 AM Tuesday I fell asleep for a little bit. The DR ordered an ultrasound to see what was causing the pain. The tech came up to see me which was nice. Although I wasn't overly thrilled at being woken up at 7 AM. When the tech left I was able to fall asleep again. It wasn't as peacefull. I would wake up on and off. I remember my mom arriving and sitting here for awhile. I also remember her saying she was going to get some lunch and be back shortly. The next time I woke up was when my nurse came in, probably around 1 PM, he told me he had some consent paperwork to sign before surgery. I was instantly awake and like wait what!!!!!!..... My brain was so shocked and I remember my mom saying she would be back shortly after all she had just gone to get lunch. I started crying, called my mom and I told her they wanted to take me back and do surgery within the next 15 mins. She told me to make them wait to take me down.

I called Brandon and told him I was going in for surgery, but when I started to look at the consent forms it was for a different patient. I was like well maybe they are mistaken then and its not me they want to do surgery on. Right as I finished that sentence the surgical nurse came in to take me down to pre-op. I told her she had to wait for my mom. Here I am 27, tears in my eyes, telling the nurse I want my mommy. I was so thrown by this surgery thing. I told her that my floor nurse gave me the wrong paperwork. So they had to redo the consent forms. Also my floor nurse told me they were just going to go in and look around at my gallbladder to see if that was the cause of my troubles. The surgical nurse kept telling me they were going in to remove my gallbladder. I was so confused and upset that when my mom showed up they let her go down to pre-op with me.

The surgical nurse also told my floor nurse to start an IV on me. My floor nurse wasn't able to do it so they called some other person in. He went for the veins in my arm (where the elbow creases) This vein imparticular had been poked 5 times prior and blown out 5 time prior. It looks like someone put it through the meat grinder. I tell this guy that he isn't going to be able to get anything, but I don't know any better and he tried anyway. Of course he had to do a little fishing in the vein to try and get anything out of it. Hurt like a son of a gun. He then tries to retract blood from it, but low and behold there was no blood coming from it. He then tried to flush it and it burned like a mother too. I was just like you have got to be kidding when he left it in taped it and said it was good to go. First thing I did when I saw the anesthesiologist was tell him my IV was very ify and he may want to redo it. He then tried to flush it and got a nice big bubble of water just above the vein. Again the dang floor nurse blew out the vein. The anesthesiologist was able to find a different one. He told me that if I hadn't let him know he would have noticed half way through drugging me that it wasn't working properly and could have caused major issues with me not being out and feeling the surgery. I wasn't very happy with the stupid floor nurses after that.

This is my poor arm right before they took the last IV out of it

Anyway, the DR went in found that my gallbladder was in very bad shape and needed to be removed. After 2 hours in surgery some time in recovery I was back in my room getting pain killers and feeling pretty good for the first time in awhile. I thought it kind of ironic that I was happier after surgery than for weeks prior. The DR is hoping that this takes care of the nausea and pain and I can eventually start eating regularly. Hopefully this is the end of the sickness and the beginning of my recovery. The DR is supposedly sending me home tomorrow morning sometime. I am ready to get out of here. Also I believe this means feeding tube for 1 more week not 2..... Here's to hoping. Oh yeah the lab techs now have to get blood out of my feet. There are officially no more veins in my hands and arms that will give them enough blood for their tests. I look like a druggie. I am just relieved that this mess seems like it is finally, finally, finally coming to an end and the sun is starting to come shine.

Me in my little gown with my feeding tube.. Looking lovely as ever ;)

Can't wait to be FREE

Last Sunday I was not feeling so well. I had to have my grandpa drive me to the emeregency room. I didn't think that it would be the start of a 9 day stay.

From the beginning:
Most of you know I had surgery April 12th. It was a pretty difficult surgery and I was having a hard time from the start. I ended up staying in the hospital that time longer than usual. I am supposed to be very carefull of what I ate afterwards. Believe me, I was very cautious. It wasn't worth the discomfort that being careless caused. For some reason though I never truly got well afterwards. I was constantly sick and couldn't figure out why. I tried to just get past it and live life the best I could.

Brandon and I had planned to go on a vacation. It wasn't the best timing since the surgery, but we weren't able to move his days off. So we went on our vacation which was totally fun with a few moments of misery. I was so sick some days that we weren't able to do much. I would throw up on an average of 5 times a day. The problem was I wasn't eating or drinking much of anything, because I was always feeling sick. I honestly thought that it could have been morning sickness if it weren't for the fact I just had a pregnancy test with the surgery. Anyway, more on the vacation later.

Half way through our vacation I just stopped eating completly. I would be able to keep some liquids down but not much. When we got home the vomitting increased to about 10 times a day and was getting worse. It was so miserable, it wasn't quick and simple it would choke me and was very violent. Finally my DR. figured it was time to do a scope to see if he could find anything. After the scope they did find an ulcer. The DR gave me medication for it and sent me home. Was supposed to go back in 10 days. The night after the scope I was so miserable and sick I couldn't even keep liquids down. I let it go on for a couple more days when Brandon finally told me I had to call the DR. or he would. I wasn't wanting to burden the DR. with anything it was Memorial Day Weekend. I figured it would just pass. I gave into Brandon though and called the DR Sunday morning and he instructed me to go to the Emergency Room.

While in emergency they ran tests did a CT Scan and gave me nausea medicine. After enough medicine I finally started to feel half way decent. The tests they ran on me concerned my DR enough that he decided to admit me to the floor. My potassium levels way low ( I have gotten a ton of potassium daily and it is still lower than they would like. I know have to take horse pills that have been broken up into fourths.) The DR also wanted to put me on a constant drip to help the ulcer. I was thinking that I could be going home shortly after that but later Sunday night I got sick again as usual and this time none of the medicine they were giving me helped. My poor veins were colapsing due to the potassium pumping through them. It went back and fourth like this for the first half of the week.

My DR has been completly baffled by what is going on. He figured it was coming from the ulcer, but they ran another CT Scan and that showed that the ulcer was getting better and I was still getting sicker. Wed he wanted to try to give me Tordal to see if that would help with the nausea. He also sent me down to get a tube down me since it had been over 2 weeks since I had eaten anything. The tube wasn't very fun and that first night one of the nurses clogged it. I ended up having to go in and get it done again. I finally decided if this one clogs or something happens there is absolutely NO way I would go through getting the tube in again. Anyway the tube feedings instantly made me sick along with being extremly tired of being in the hospital, throwing up... I was about at my witts end. I was miserable and adjittated I wanted to just die. I was so down that that is all I could think of. Just let it end. Being sick like that drains every ounce of fight/energy out of you. I was amazed I had anything left.

My DR still has no clue what is going on. They are trying everything they can. They put me on some antibiotics incase there was an infection somewhere. My temp was normal so they were just shooting in the dark. My mom told him how anxious I had been so he prescribed me Marinol. Between that and the Tordal I got some courage and tried to eat something. At first everything tasted so sweet but eventually I was able to keep it down. The Marinol was a lifesaver. All they told me about it was that it would calm me down, decrease my nausea and make me hungry. I didn't think much about it till the DR said that he prescribed the legal version of Pot. POT seriously... lol I just laughed. But I will tell you it helped. I still have moments of queesieness. I still get scared I will get sick again. I'm not happy about going home with the feeding tube. I have 2 weeks of the tube while at home, hopefully that will keep me well when I leave here.

I should be going home tomorrow the 9th day of being in here. It will be nice to sleep through the night without being woken for vitals or to be poked again by the lab people. I don't have any veins left. It got pretty close to them having to put it in my neck. Small miracles. So here's to hopeing that everything turns out well as soon as I go home.