Saturday, April 28, 2012

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!

Sunday, April 15, 2012

Rough Week

Well this week hasn't exactly gone as I had hoped or planned, but glad it's over and things are improving again. Slowly, but surely. The week started out fine. My mom came and stayed with me Monday and I was doing pretty good. I told her she didn't need to come Tuesday and that I would be fine by myself. Tuesday morning I was feeling really good. I had even been taking less pain medicine for the last day or so. Around noon I started to feel kind of sick and get a stomach ache. I was sure it would pass soon because I had felt similar to this lots of times since the surgery, usually after eating. I laid down while I waited for it to pass, and took some pain medicine and nausea medicine. But it did not go away and just kept getting worse and worse. I fell asleep for about an hour but woke up with it still being really bad. I noticed that hardly anything had been put out from my ileostomy all day. Around 2 Chris called me on his break at work to see how I was doing and I just started crying and asked him to come home. He came home right away and stayed with me. I was in so much pain and just crying and crying. I called my mom and she said it was probably a blockage (it is really easy to get them with an ileostomy, it happened to me a couple times last time I had one) and that we should go to the ER. Chris had been asking me if I wanted to but I kept saying no, hoping it would clear on it's own. Finally I gave in and we went to the hospital. When we got there, there were several people in the waiting room of the ER and I thought we were going to have to wait a long time, but they called me back first. I think they could tell I was really sick. I was so relieved. They got an IV started on the first try (although it was right at my elbow, a terrible spot) and gave me something for pain and nausea, which made me pretty out of it (which I was ok with). My mom and little brother Kyler came. They did a CT scan and said that it looked like I had an obstruction. They said if it didn't clear it was possible I would need surgery, which scared me to death! They put an NG tube down my nose which went down my throat into my stomach (pretty miserable to have), but the idea is that it sucks things out and helps clear the obstruction, also helping with nausea and pain. They admitted me. The first night was pretty miserable. They were giving me pain medicine every hour. It was painful to move. I could only have sips of water and ice and was very thirsty. The next morning they gave me a PCA pump which controlled the pain a lot better and I started to feel lots better. By that afternoon I got up and went for a walk. The dr said if the NG tube started clearing up and putting less out then they would remove it that night or in the morning. I was getting really hungry. He let me eat a couple popsicles and they tasted so good compared to the water and ice I had been having. For dinner that night they clamped the NG tube and gave me a Full Liquid tray to eat. After a couple hours I felt fine and was not having nausea so they removed the tube around 10:30 that night. That night I slept much better and was hardly pushing the button for pain medicine. The next morning the dr said I could try a regular diet and if I felt well that night, then I could go home. I also had a pretty low red blood cell count, it was 7 and should be at least 12, so they decided to give me a blood transfusion. They also removed my staples that day on my incision, which was nice. My mom was there with me that day so Chris could go to work. I had the blood transfusion, ate regular food for lunch and dinner, was back to oral pain medicine (which I was hardly taking any of) and felt lots better so we got to go home about 6:30 that night. I was very happy it was such a short stay this time, and that there was no surgery! The dr didn't really know what caused it. He said most likely a combination of things, such as dehydration and pain medicine were likely contributors. Also just because I had had such a big surgery and was so sick going into it, a complication wasn't that out of the ordinary. Really I have been very lucky, considering how sick I was, that it wasn't worse or harder than it has been.

My mom asked if I wanted her to come stay with me Friday but I told her I would be fine by myself. I told her she could stay home for once and get some things done. Friday turned out to be a really rough day. I was so exhausted that it took so much energy to do ANYTHING. I was very emotional and kept crying over little things (such as not being able to open the container of potato soup my sister had brought us the night before). I talked to my mom and told her I was fine, but I wasn't.
I was also frustrated because I was waiting for the dr in SL to call me back. I had called them first thing in the morning because we were worried about me ileostomy. I am having a little problem with the skin being separated from it. I sent them a picture of it last week and they said to watch it, and then the next time I saw it it looked worse. The same thing happened last time I had an ileostomy, but it was all the way around it. At least this time it is just on one side. Last time the dr ended up just stitching the skin back to it and then it was fine. It happens likely due to steroids, which can compromise healing. Anyway, about 3 or 3:30 my mom texted me asking if I had heard from the dr yet, and I just picked up the phone and called her crying. I felt so alone and I guess you could say I was feeling sorry for myself. She kept offering to come see me, but I didn't really see the point when Chris would be home around 6, but finally I decided I couldn't stand to be alone any longer and so she said she would get in the car right then and come. Her and Kyler showed up about 35 to 40 minutes later. I was in bed and they both just crawled in bed with me and let me cry for awhile. Eventually I felt better and Kyler cheered me up by showing me some funny videos on You Tube of Brian Regan and the show Call of the Wild Man. My mom made me half a turkey sandwich and some lemonade. About 5:30 the dr called and told me that they weren't worried about my ileostomy and that it was normal to happen sometimes. They said if it gets to be too big of a pain then they can see me sooner than the 25th (which is when I have a follow up appointment in SL), but otherwise they would look at it then. I felt better after talking to them. I wasn't too worried about it, mostly it is just a pain to deal with. Anyway, we just sat and talked until Chris came home. My mom and Kyler left pretty soon after that. I cried some more to Chris and he just let me complain. I was feeling like I had a huge setback and was frustrated that I was so tired, that I still cannot fully use my arm, that I was feeling short of breath, even when just sitting or lying down, and was feeling lonely. He gave me a blessing and some good advice. He made me spaghetti for dinner which was the only thing that sounded good, and made a cute picture on the computer that had a monkey on it that said "Hang in there." (I should have posted the picture of it but didn't think about it)! We had a nice dinner and I was feeling lots better. Chris went to Redbox and got a movie which we watched cuddled up in our bed. It turned out to be a stupid movie, but it was nice to do just the same.
All weekend I have still felt very tired and not able to do much but sit and lay down, sit and lay down. I am getting very tired of it but am trying to be positive now. I know that I will get better. I have had a little bit of a hard time seeing my friends and family post things on their blogs and facebook that they are doing for fun, with the weather warming up and all. I have felt a little jealous. It has been 6 weeks since I have been to work. I hope I can go back soon. I know that once I get my strength back I will feel so much better and can't wait for summer and being able to do fun things again.
My mom is coming again tomorrow and I am glad. I am so thankful for her and all she has done for us. The lady that she takes care of fell right about when I went to SL, and went to a care center to get her strength back, so my mom hasn't had to worry about missing much work. It has been a blessing that she has been able to be with me so much.
Well I did not intend for this to be so long, but oh well. Here's to a better week!


Well we were able to have a nice Easter. I was feeling like getting out of the house and good enough to, so we went to Burley to my mom's. She made an amazing turkey dinner. My sister Tysi and brother Kelby and their families were there, as well as my little brother Kyler who had just moved home from BYU-I that weekend. These pics are out of order and I don't know how to fix it. All the pics except the first are cut off on the right side for some reason. I think it's because of the app I used to load the. Guess I won't be using that anymore. Anyway, the first pic is of the kids showing off their loot after the Easter Egg hunt-some were more excited than others. The next pic is of some treats I saw on Pinterest and talked Chris into helping me make. Basically he made the no bake cookies while I supervised and then I put them together at the kitchen table. I think everyone liked them.

Kyler was just like himself up to his old tricks again. With the help of a very brave Kelsi and Jenna.

Kelsi also had Kyler doing stunts with her. Then they all took turns tumbling in the front yard.

Later we had an Easter egg hunt with the kids. It was fun watching Halli and Luke because they both got sooo excited every time they found an egg.

Some eggs got hidden in some very hard to reach places, but that didn't stop Kade.

Or Ian.

But they did get prizes at least.

All in all it was a good day and I'm glad we got to do something nice for Easter in the midst of everything that has been going on. I feel like I have been missing out on life and that springtime, and life, and everything is just passing me by. So it was nice to be able to do something fun. I am so thankful for Easter and for the resurrection and Atonement of our Savior. Especially at times like this in my life. I am very comforted to know that my Savior knows how I feel and that I am not alone.

Thursday, April 5, 2012

Oh What a Lucky Girl Am I

I just wanted to post this picture I found on my mom's camera from our wedding luncheon. I hadn't seen any pictures from the dinner so I was excited. Mostly I just wanted everyone to know what a wonderful husband I have. I never commented on the post he wrote. How sweet was that?! I told him he can hack this blog anytime he wants. :) Anyway, he is pretty special and I don't know what I would have done without him these past 6 months, especially the last month. He is doing so good managing and organizing all the bills we are getting, cleaning, laundry, and anything I ask him. It's lots of work for me to get up and even get a drink of water (although I am trying to as often as I can), and he is always willing to jump up and get me whatever I need. Oh how I love him. :)

I am still trying to muster up the energy to write more about the hospital, but it will come eventually. I am continuing to do a little better everyday, but it is slow. Yesterday was a little rough for some reason. I decided I just need to keep up with my pain medicine better and not try to do so much. The physical therapist came today and gave me some exercises to do to get stronger (mostly with my legs). The occupational therapist is who will work with my arm and they are coming tomorrow. I saw Dr. Smith today and he was pretty concerned about it. He emphasized that I need to be my own advocate and make sure I'm getting the therapy I need for it. He even suggested seeing an orthopedic dr, and the PT today said seeing a neurologist might not be a bad idea. So maybe I will end up seeing one of those, I need to ask the OT what they think. Dr. Smith said my incision looked ok. He was concerned about infection just like to doctors in SL, and said to watch it good. I think it is looking better so I'm not too worried.

I got my glasses today and they are way cute! I will have to take a picture and post it soon. Also got a new phone in the mail (the same one I had before because we had insurance on it). We had to pay the deductible and found out the hospital will reimburse us if we provide a receipt. Same with the iPod so we ordered one so that they will reimburse us. It was great to find out the hospital was willing to replace everything though!

So once again I have to remember the blessings in my life. I am so thankful for all the wonderful people who have been there for us. Lots of people sent/brought gifts. You'd be surprised how much material things can brighten your day when you're in the hospital! Even little things like a keychain from Lagoon that lights up with your name on it from your 5 year old niece, or a slap bracelet flower watch from the Primary Children's gift shop that a certain wonderful husband was persuaded to buy (so cute-I will post a pic of that too)! I received LOTS of other fun stuff too-flowers, pajamas, shirts, lotion and shower gel, books, socks, Easter decorations, stuffed animals, a Willow Tree figurine, treats to eat, and there's probably more that I'm forgetting. Basically I'm spoiled and people like me way too much. :)

I also wanted to throw in a little exciting news that during all of this Chris was accepted to both grad school programs that he applied to for Health Care Administration. He talked about it a little in the post he wrote. He was accepted to Penn State and Washington State. We haven't decided for sure where we will be in the fall, but we are close to making a final decision. I am so pround of Chris for working hard and getting into grad school (good schools too)! I will be sad to move but I'm excited to get on with the next part if our lives. Once again, I have a wonderful husband who is working hard to provide for me which I have always wanted in a husband. That way someday I can stay home and be a mom. I am the luckiest girl around.

Tuesday, April 3, 2012

Home Sweet Home!

Well just thought I'd post a quick update that we did indeed make it home yesterday (Monday). We were so excited! On Sunday the doctors had actually said they were thinking more like Tuesday or Wednesday because they were still worried about a little infection in my incision and just wanted everything healed well before they sent me home. We were pretty disappointed but then Monday they started talking about going home that day again and decided I was ready. They drilled into me the signs of worsening infection and set up an appointment for me to see Dr. Smith to look at it on Thursday. They set me up with Home Health (they are coming tomorrow) to help with wound care, the ileostomy, and physical therapy for my arm. We filled a bunch if prescriptions at the pharmacy there (which cost a lot of money!), including a blood thinner that is a shot I give myself every day :(. As soon as everything was in order we were on our way. My mom had driven Chris' car to SL so she rode back to Twin with us. We got home about 6:30. She helped us put away our loads of stuff we had and ate dinner with us and then went home. Chris' mom and little sister brought us a yummy dinner (awesome job Courtney)! The ward is going to start bringing meals tomorrow every other day for 3 or 4 meals I think, which will be really nice and helpful.

Anyway, we are so happy to be home. Today I slept a lot and didn't do a lot, but it's nice to be able to get up and walk a little more (without a walker)! This afternoon Chris had a doctor appointment for a sore throat that he's had for a few days but they said it's just a sore throat. I feel bad he doesn't feel great and has to take care of me. :( He also has a cyst that has been developing on his wrist for the last month or so that he had them look at and so they are going to remove it next week. Anyway, after his appointment he came home and got me and took me to the eye doctor. I called this morning and got an appointment. When I had the sigmoidoscopy the day I was flown to SL, they took my contacts out and I never got them back. When Chris packed a few things for us originally he forgot my glasses so I could not see at all for a few days. Chris' dad and stepmom brought my glasses for me but couldn't find my extra pair of contacts I thought I had. I had an appointment to get new contacts before April (before my insurance started over) but I missed it by being in the hospital. My glasses are like 4 years old so the whole time I couldn't see very well and was very annoyed. Anyway, we got it all taken care of today! I got new cute glasses that will be here tomorrow and they gave me a new pair of contacts to try and if they work then we will order them next week. Kind of sad we couldn't have gotten the contacts in March and glasses in April so insurance would go toward them both, but I think we will just order a box of contacts for cheap from Costco to get me by until I start working again and we have some money. :) Anyway, I guess my whole point of this is that I'm so excited to be able to be wearing contacts again and that I can see! And so excited for my glasses!

We also ordered me another phone that should be here tomorrow so I should be back in commission then. We were told today by the hospital that they are checking into replacing my phone and iPod but to give them a few days. That would be really nice to get reimbursed for those.

Last night it was so nice to be able to sleep (next to each other) in our own bed. We are so thankful to be home and for the help, love, prayers, etc that we have received the last month. I will continue to update and hopefully add more details about the hospital stay and everything that happened, with lots of pictures! Until then here is a pic taken a few days before I left when I was finally able to take a shower and wear my own clothes again!