I Don't Even Know What to Say...

Well sorry it's been awhile since the last post. Remember how the next week was going to go much better than the week before?...Yeah that didn't happen. Sunday after I wrote that post I started to not feel too great. We went and ate dinner at Chris' dad's house. My stomach was vaguely hurting when we left. We were there a couple hours and it kind of just got worse. By the time we got home it was hurting a lot and I  started to cry. It wasn't the same kind of pain as when I had a blockage. I was convinced it would go away soon. I laid down and we watched a couple episodes of Saved By the Bell to keep my mind off of it. We said several prayers and Chris gave me a blessing. Chris kept asking if I wanted to go to the hospital and I really did not. Finally I told him if it wasn't improving by 10:00, then we would go. I didn't get much better so we left our house about 10:30 and went to the hospital, once again. Chris packed some stuff in case we ended up getting admitted, but I really thought they would say it wasn't a big deal and send me home. Little did I know...

They gave me stuff for pain, of course and did an x-ray, which didn't show a lot. They also did blood work which showed my white blood cell count was really high (suspicious of infection). The dr seemed pretty concerned about it so he decided to do a CT scan. During all this time they also had to come take blood, I swear 17 times (ok probably 3 or 4 but it was annoying). The CT scan showed that my abdomen was full of infection. At that point they couldn't tell if there were abscesses or what, but they knew it was bad. At this point the doctors started to act like it was something really serious and started tossing around the words "septic," "ICU," and "surgery." The got me to the ICU about 5 am, at which point Chris called my mom. The surgeon eventually came in and said I definitely needed surgery and I needed it right now. I was terrified. He had another emergency surgery he was going into, and then was planning on taking me in the next hour or two. The hospitalist on call came in and gave me a central line in my neck, which was not a pleasant experience, especially because I was still in so much pain. When my mom and dad and Chris' dad got there, the dr started talking about all the things that were wrong. He was going on about how my blood pressure was way too low, my heart rate was way too high, my white blood count was high, by now I had a fever of 101, and so on. He was talking about the surgery and how I might wake up on a ventilator. He said I was septic, and if they didn't try and take care of it, then it could turn into septic shock, which would be even worse. It was the kind of things you hear on tv, or about another patient, not what you hear about yourself. I was crying quite a bit because I was so scared. I did NOT want to go through another surgery. All I could think about was how much pain I was in when I woke up from surgery in SL, and how hard it was afterwards. I also did not want to wake up on a ventilator, if I was sedated the whole time it would be ok, but I did not want to remember it. They said if I was kept on a vent for 24 hours afterward, then by the time I woke up, I wouldn't be in so much pain, though. That was the only plus that I could see.

Anyway, the time came to say goodbye. I wiped my tears and tried to say a prayer and be calm. Freaking out would not help any. The next thing I remember was waking up that night (on a ventilator).  I think my family was there at first but then were told they had to leave. I was left with the nurse and respiratory therapist who were trying to determine if I was breathing well enough to come off the vent. I was very awake and very miserable. I had so much spit or mucous in my throat that it made it hard to breath and they kept having to suction it out every minute or so. I was so nauseated I really thought I was going to throw up even though there was a tube down my throat and that scared the heck out of me. I was sweating HOT. I finally was able to mouth to the nurse "HOT" and she took some of the blankets off, which helped a ton. I then started mouthing "ZOFRAN" to her. After several times she got what I was saying and went and got me some (it's for nausea), which also helped lots, eventually.

Here is a pic Chis took on his phone when I was still on the ventilator. He had a better one which also showed the plethora of IVs and machines I was hooked to but it somehow got deleted. My mom might have one that I'll have to post sometime. I had 3 IV poles full of stuff, plus all the monitors and machines.

They had planned on leaving me on the vent for 24 hours afterwards, but I was actually breathing room air and doing really well so they started testing me to see if they could get me off of it sooner. I think I ended up being on it for 6 or 7 hours. I am so thankful for the nurse and respiratory therapist for convincing the dr that I was doing well enough to come off of it. They kept telling me to take as deep a breath as I could, but I couldn't ever get very far because of all the mucous and spit in my throat. But the more time that went on the more anxious and agitated I got. My arms were strapped down so that I wouldn't pull at any of the tubes and that drove me nuts, mostly because I couldn't even motion to them what I wanted. A couple times the nurse and RT left to talk to the doctor to convince her to extubate me and she said no at first but eventually they convinced her. I don't think I could have handled it much longer. Once the nurse left to talk to the and I was alone, and I was still nauseated and still needed suctioning out of my mouth so I could breath better. I rang the call light, which thankfully I could reach and another nurse came in who did not understand my mouthing as well, so he got me a pen and paper and I wrote "suction" and "zofran." But soon after the first nurse came back and said they could pull the ventilator out and they did right then! It wasn't very pleasant but it only lasted a second and was over. After that my family could come back in. I was much happier.

I spent the next 4 days in the ICU (till Thursday), mostly because I had so much stuff hooked to me. But we weren't complaining because it was nice to have a nurse who was devoted to just you. I found out that I had six abscesses full of infection that they had to clean out, and they removed a few more inches of intestine that was twisted. There also was a lot of scar tissue and my bladder was scarred to my intestines. When they were separating them, it tore a hole in my bladder and the urologist had to come and repair it. He said he likes to get 3 good layers of tissue around when he does a repair, but with me, he go one good one and maybe part of another layer around the bladder. This meant that I would need a catheter for 2 weeks, and have to go home with it to make sure everything healed. I was not very happy when I found this out. After a couple days they got the blood cultures back that identified the infection I had, which is enterococcus and also some yeast. They had been given me 3 strong broad antibiotics but now they could give me the one that the infection was sensitive to.

I also woke up with a feeding tube. I don't know why but the dr started tube feeding right after surgery. Usually they wait till your bowels wake up a little. During the night the first night I started having tons of pain and they stopped the feeding tube and I felt better. It didn't make sense because I was not digesting anything (nothing was coming out of my ileostomy), but they were feeding me all this stuff. The next day they started TPN and a different tube feeding formula that is much easier digested, and did it at a very low rate, just to keep the gut functioning. Eventually after a few days we were able to work up to a higher rate and get off the TPN.

I don't think they are really sure where the infection came from. One time they would say maybe from my last surgery, but then they would say it's been too long to be from that, so I guess that's the origin of the title of this post. I don't even know what to say about the whole thing. It was really sudden, really random, and just weird.  Surprisingly though the recovery has been much easier than my last surgery, and not as painful. I was taking way less pain meds when I left the hospital this time than when I left SL. So for that I have been so thankful.

I have been home since Tuesday. Either Chis or my mom have been with me every day at home and in the hospital. I get tube feedings at night for 12 hours, which is probably a good thing. I can give myself fluid through the tube as well. I have a J-tube (jejunostomy tube), which means it goes right below my stomach into the intestine. So my stomach still feels hungry and I can eat during the day. Hopefully soon I will be eating enough on my own we won't have to do the tube feedings anymore. I can tell my appetite is getting much better already. It was a pain to go home with a catheter. The doctor was pretty clear though that he wanted it in for two weeks, which meant I would have it for about a week at home. I had an appointment on Friday though (yesterday) for a cystogram, which is an x ray where they fill your bladder with dye to make sure there are no leaks anywhere. They said if it looked good, then they would remove the catheter on Monday. I couldn't really see why they couldn't remove it Friday if it looked good on Friday, but I accepted it. So I went and did the test, which was one of the most uncomfortable things I have had done, but they said everything looked good and there were no leaks. After we were done my mom and I stopped at Wal-Mart for a few minutes and while we were there the doctor's nurse called and said since everything looked good I could come back and have it removed!! I was one happy girl. So of course we went straight back. I was getting pretty uncomfortable with it. I feel sooo much better with one less tube hanging out of me!

I am trying hard to do my physical therapy exercises, take all my meds, and eat good. I decided I really needed to make getting better a priority and put all of these things first so I can recover and get better. It sounds weird, but it's a lot of work to do everything I'm supposed to do, and I really have to talk myself into taking my medicine sometimes. My goal is to be working at least a little within a month, maybe less, I really don't know. My arm still needs some help but we're working on that too. It is getting much better though. So NOW I think I can say that things are looking better and hopefully improving for good. I once again am filled with gratitude for everyone who has helped us, brought us dinner, for all the prayers, visits, phone calls, etc. Especially for my mom who has been there every day that Chris has to work. The last couple days she cleaned our bathrooms and done laundry. She is such a support to me. Also thanks to Chris for all he has done. He and my mom have handled playing nurse pretty well, with hooking and unhooking tube feedings and catheters, etc. I don't know what I would do without them. So say a prayer that nothing else goes wrong and I can get better! I really want to feel well enough to see my nephew get baptized in Boise next weekend, and Chris has his 10 year high school reunion the next weekend after that (I know he's so old)! I am ready to start having fun and stop being sick!