Well… I figured that I would take this opportunity on the plane to fill you in on all that has happened during my stay in California. O my goodness… what a trip I had. I thought I would never get home after all that was occurring. I am still recuperating and still coming off all the drugs, so I don’t know how much I will be able to type and tell you because my hands are not cooperating as of yet (can’t get coordinated typing) and I am still not feeling well.
What a trip that we had starting from the plane ride to California. Even though we had a stopover in Chicago, I thought that it wouldn’t be so bad because we weren’t changing planes and therefore, we would definitely not miss out connection. However, little did I know that we were going to be delayed in Chicago because of fog. So, from having a plane ride that we weren’t supposed to get off the plane because it was only supposed to be like a 20-minute layover, it turned into everyone having to get off the plane because it was more like a 2-hour layover. The plane ride was so tiresome that dad said that he couldn’t do this long trip anymore. Never thought I would hear that from dad, but he said that he was literally climbing the walls.
Well, after the long and tiresome plane ride to California, all we wanted to do was go to our hotel room and relax. We were supposed to get the same room that we always get because it is the best one for me, as it is right near the soda machine (it is easy to get something to drink and when I am not feeling well, I don’t like being left alone for a long time while dad hikes to get something to drink for me), has a king size bed (so it gives me and my dad more room to sleep and less chance of him hurting me. After all, I am extremely hypersensitive and any little touch hurts me. He doesn’t mean to hurt me or anything, but tossing and turning is inevitable at times when you sleep even though he tries to hug the side of the bed so he doesn’t have any chance of touching me), has a huge bathroom, etc. However, this hotel room was not available for the first night unfortunately. Therefore, they said that we could go to another room for the night and be switched into that room the following day or we could remain in the room that they would switch us into right then.
It turns out that the room that they switched us into was upgraded from a regular room to a JUNIOR SUITE. It was huge. It was fantastic. It had a huge flat screen television, 2 couches, and you should have seen the closet. The closet was a walk-in closet and it was so big that it looked to be the size of my room at home. I told my dad that if “snores,” he is sleeping in there for the night. What a room it was!! Too bad I wasn’t going to be around to enjoy it. I was so jealous of my dad!
Well, I went for the first surgery on Monday to put the tubes in me. Of course nothing with me comes without complications. I was in a lot of pain and they had a hard time starting the IVs. The doctors asked me if I wanted to sign a DNR (do not resuscitate) order, but I couldn’t do it with my dad standing right beside me. Even though I was seriously contemplating it because I am so tired of fighting and my body wants to go already, I couldn’t do it because my dad was right there. I looked at him and I saw it in his eyes that he didn’t want me to do it and since I love my dad so very much, I just couldn’t do it. I then realized on the way home that if I did sign that order, I probably wouldn’t be here today after all that happened during the trip. But I will get to that soon.
So much was happening that they wanted to “relax” me as much as possible before surgery. They came with medicine to do the trick, but I knew that once I took that medicine, I was going to be “knocked out” completely. I told them that I didn’t want to be taken in for surgery until I said “goodbye” to my dad, but they assured me that I wouldn’t be put to sleep with the medicine that I was given. Yet… who was right?? Due to my extremely hypersensitivity, I am also really sensitive to medicine. Therefore, I was knocked out like I said I would be and even though they tried to wake me up so that I could say “goodbye” to my dad, they were unable to do so. So… my dad gave me a kiss and moved me into the operating room to do their stuff. I was then put on bypass and general anesthesia, and they put the tubes in me.
Even though these tubes had less than a 20% chance of working, they were trying this to try to “buy” time because my body is literally deteriorating and dying. The doctors don’t know how much time that I have left and therefore, they wanted to “buy time” until I got the transplant. They also wanted to make me stronger because my BMI is only 12.5, and death happens at 12 for females. Thank goodness I am not a male because if I was, I would surely be dead already because they can’t live below 13. I barely weigh 70 lbs. and they want me as strong as possible for the transplant as well. They also know that if I would get sick with anything, I would surely die because I have no “reserves.” Therefore, they wanted to “fatten” me up so that it would give me a better opportunity to fight these illnesses and overcome the transplant as well.
Even though the doctors knew that my entire GI transplant was “dead,” they were hoping that perhaps a small portion of my small intestine was viable lower down. So, they were putting the tubes in me to bypass the esophagus, stomach, and most of the small intestine so that they could perhaps find a small piece that is viable. If they did find that piece and it was successful (and I accepted the tubes so that my autonomic dysfunction didn’t act up and such), then they would make the tubes more permanent.
However, the doctors didn’t realize I was as complex as I really was. In fact, they couldn’t believe it. I really gave them a “run for their money” while I was here. After the surgery, I was in a huge amount of pain because my underlying neurological illness spread and worsened. Anytime there is “trauma” to my body, I risk my neurological illness spreading and worsening. I am already in severe pain 24/7 and it is the worst pain imaginable, you can’t imagine how horrible I was feeling because of the exacerbation of my illness. They say that my illness is the worse kind of pain ever, as it is worse than childbirth or anything else.
After the operation, I was in severe pain. I couldn’t even stand up. I was so scared because at least before the surgery I was able to stand even though I could only walk on crutches and such. However, it was at the point now where I couldn’t even stand up. I couldn’t even get up or down. I was scared. The doctors really had to do something because my body was shutting down even more after the surgery and I was just having one complication after another.
Due to all the complications that we were having, the doctors couldn’t even start the tube feeds that would possibly “save my life.” Therefore, they had to do something in order to try to save my life and help the tube feeds. The doctors wanted to put me into an emergency ketamine coma and therefore, I was transported to the ICU.
What a week that I had in the ICU, no matter what they did, the tube feeds wouldn’t work. They were just having complication after complication. The doctors said that they never saw anything like this. They even said that they never saw someone who took as much medication as I do. I take over 50 pills daily. Not only was I scaring the doctors, but I was scaring my dad as well.
So many things happened. One thing that happened was that my heart rate dropped so low that they literally had to bring in the paddles to “jump” my heart. They even did an EKG and it appeared that my heart stopped for a brief time as well. The nurses wanted to leave the pads on me after that situation happened, but all they had at the time were “adult” pads and it was the size of me since I am so small. So, in the meantime while they went to get pediatric pads, the left the crash cart by my bed just in case something happened. I really freaked everyone out.
Another complication that we had was that my veins kept burning up from the IVs. I must have had over 20 IVs because they kept being burned up. The nurses had a hard time even restarting the IVs and even the doctors had to do it too because of the extreme difficulty. Even the “Crisis” team couldn’t put my IVs in anymore and they are supposed to be able to access anything. However, with my illness and such, it was really giving them problems. My veins were so hypersensitive that they just kept “burning” up. Even when they went to “flush” the IVs, I would go through the roof because of the extreme pain. The slightest amount of pain to a normal person is like a knife going through me. It was really unbearable.
The doctors were trying everything to try to get the tube feeds working and to get me stabilized because they said my body was literally on “borderline death.” They decided that despite giving me the ketamine, as I was put back in forth into ketamine comas and then ketamine infusions, they would try lidacaine infusions with this as well. However when they did this, I was very itchy and they gave me Benadryl to compensate the itchiness. Yet you will never guess what happened.
When they did this, it was basically at the point where my body literally had enough and couldn’t do it anymore. My veins literally all became inflamed and despite the rash that broke out all over my body, the veins turned all red and protruded way out of my body. I really scared the doctors and nurses because the nurses ran for the doctors and when the doctors came and saw what was happening, they literally took off running out of the room. The nurses remained my dad and me to try to keep us calm but the doctors ran so fast out of the room that their feet didn’t even touch the ground. When they came back, they were all so out of breath. What a sight it was. I was really having a bad reaction to everything and my body was really going down. I couldn’t do this anymore. I literally had enough by this point. The doctors and nurses all said to my dad that they have seen stuff with me that they never saw before.
As I am really ill, the medical team and my dad and me decided that I could come back home for a little while. I wanted to go home because I knew that I was running out of time and the doctors wanted to do some more “risky” procedures that could very well kill me. However, with not knowing how much time I have left, I really wanted to see my mom and enjoy some time at home before they try these really “risky” and “intense” procedures. The doctors would have preferred me to stay because they said that I could “basically die at any minute,” but they understood me wanting to go home and see my family and enjoy myself a little beforehand because the cards didn’t look good for me.
So, yesterday we had a big conference with the whole medical team and they told me that I would come home for about 4 weeks and then return for more treatment. They made sure that I knew all the warning signs of when I really need urgent care and such. But they said that even though I was going home, they literally feared for my life. I was so afraid that they weren’t going to let me go home, but thankfully they saw where I was coming from and let me go home. I was so relieved after they told me this even though I know that I can literally “die” any minute even though I might look and seem perfectly all right.
When I come back to Stanford in 4 weeks, they will be doing more intensive treatments to save my life. They might be putting in central lines despite the fact that they really didn’t want to do this because it would probably kill me and such due to the fact that I would most likely get a severe infection and such. They were also going to put me into a coma for about a week so that they could try to “feed” when I am unconscious. It is extremely dangerous, but we really don’t have any other choice. If something doesn’t work and work soon, I am definitely going to die.
I did tell the “team” at the meeting that I never had such great doctors and felt so comfortable in a hospital. I only wish that they were all on the East Coast instead. They are so knowledgeable, have great bedside manners, and really want to help me as a “team.” I never really had such “caring” doctors. They are simply amazing.
Besides the doctors, my dad is really amazing too. He was with me all throughout this week and I can’t thank him enough for being there for me. I only wish that I could repay him somehow. I know how hard it is for him to watch me like this and I know how hard it is for him to get away from the business because without him being there, the business really does suffer. Without him there, no one is there to “run” the company and no business is being brought in or being done. Therefore, no money is being brought in to pay the bills and not only does it hurt my dad’s business, but it hurts my family as well because we depend on the business for income. If the business hurts, we hurt. That is why it is so imperative that we receive help and support from people because we really can’t afford these treatments anymore. It has gotten to the point where there is such a financial burden that unless I get some help from other people, we are really going to have to make “further” cuts. Even though I was only here in California for 8 days, they want me back in 4 weeks to stay for about 3 weeks. They said that I am “so sick and complex that they would need that amount of time to even ‘try’ to help.” I don’t know how on earth my dad is going to pull this off because it is going to be astronomical in cost and my dad will again have to take that much time away from the business.
I have the most awesome dad in the world. He really was a nervous wreck when I was there. You should see his nails, they are all gone because he picked them down. He was at the hospital every morning from 9 AM to 10 PM. He even surprised me with flowers and a stuffed animal that looked like my kitty that were supposed to be from my mom and brother. He even took guard over my legs to make sure that no one touched my legs and even wrote on the board in front my bed “DO NOT TOUCH LEGGS.” I knew immediately that he had wrote it because when I woke up one time I saw it and I knew it had to be him since the word “legs” was spelled the way it was. Only my dad would do something like that. My dad also knew how much I wanted to light a candle for my grandma for the holiday and since I didn’t, he did it for me and put it at my bedside. I really have the most wonderful dad in the entire world.
Wanna hear something funny? My dad left the hospital one night and instead of going north to San Francisco, he somehow ended up going South towards Los Angeles. He was looking and looking for the airport, but he didn’t see it. He told me that it was so desolate on the highway and there were literally no lights either. He told me that he continued to go and all of a sudden he saw a sign that said Los Angeles. He knew that he was going in the wrong direction. He went 35 miles in the wrong direction and therefore, he had to turnaround and come all the way back. He put on so much mileage on the car that day, as it took him like 70 miles to get back to the hotel. He really thought that he was going to be sleeping in the car that night because he was so lost. He literally left at 9:30ish and didn’t get back to the hotel til about midnight. When he just got back, he just threw the car at the valet person, grabbed a soda, and collapsed in bed.
So… that has been my time in California. I can’t wait now to get home and enjoy whatever time I have left. At least not only do I get to go home and see my mom and brother, but at least I get a few more weeks of eating. If the tubes would have “worked” this time, that would have been it for eating. But, since the tubes are out, then I get to eat again… at least for meantime.
All my dad keeps telling me today on the way home on the plane is that “thank goodness I have you on the plane. I really thought that you weren’t going to be sitting next to me.” I really gave him a HUGE scare. I think I gave everyone a big scare. We all know though that with everything that occurred, I probably wouldn’t have been here to day if I signed the DNR.
I know how much my dad is so scared for me. I overheard my dad on the phone with someone saying how he didn’t want to lose me. He told the person that despite all that happens and everything, he doesn’t want to lose me under any circumstances. He knows that he is “selfish,” but he doesn’t’ want me to go. He said that he would do anything and everything to keep me here. I can’t blame him or anything, but I just don’t know how much longer that I can hang in there. I am really tired. My body is tired too. It is tired of suffering and tired of being in pain.
But… I am now scared because my body is jerking and I am having a really hard time remembering everything that I want to say. I am also having a really difficult time writing. I had a hard time writing with a pen, as I had trouble writing my number (couldn’t remember how to write the number “5”). I am also having a hard time with my hands typing as they get twisted up. I am hoping that it is all because of the drugs still coming out of my system because after all, I was on ketamine for over a week and I only had it off for less than 12 hours. So, hopefully that is the reason.
Well… gonna get going… I am really not feeling well and wanna rest. I will write again soon. Thanks again for everyone’s continued support and encouragement. I definitely wouldn’t have made it this far without you. I definitely wouldn’t have pulled through this difficult hospitalization without you.
P.S. Guess what I got of course to bring home? I just had to bring home bread from California because no place has sourdough bread as good as California. My brother always looks forward to me returning with this bread. I told my dad that when I get better and can eat, the first thing I am going to eat is a California Clam Chowder Soup bowel because it is soooo delicious. It is bread shaped in a bowl with clam chowder and mozzarella cheese in it. It is to die for because no other place has chowder and bread so good.