7 Days in a Hospital Makes One Week
....according to my husband. :) Well I mentioned in my last post that I have been in the hospital. As I also mentioned, I had not been feeling well. Really I haven't felt that well since we got married. (Yes, it would seem we could blame it on Chris, but we won't)! I started taking a medication that is a shot once a month, and I think it helped some, but things got worse again. My problem lately has mostly been just lots and lots of pain. My stomach just hurts constantly, which is so exhausting! I have missed lots of work, but luckily my boss and everyone there are so understanding and good about it. My boss has really worked with me a lot to help me, and at his suggestion I applied for and was approved for FMLA (Family Medical Leave Act), meaning that they can't fire me because I'm sick a lot. There are just some days when I cannot make it through the whole day and have to leave early, or even go in a couple hours late if I had a bad night. I have tried really hard to be there as much as I can because we are a little short staffed, but everything has been ok, so for that I am really grateful.
Well anyway, Monday February 27 was a bad day. I didn't get to work until 10 am and when I got there everyone told me I looked terrible and I should have just stayed home. I had been trying really really hard to build up my PTO again (Paid Time Off), and so that's a big part of why I went. Plus it was Monday and I felt guilty because Mondays are always so busy. Well I ended up lasting until about 3:00 and went home and went to bed. That night I didn't sleep much and was in so much pain I could hardly stand it. Tuesday morning I sent Chris to work, telling him I would let him know if I needed him to come home. He has missed a few days because of me and I didn't want him to use another sick day just to stay home with me all day. Well at 7:30 I called Dr. Smith on his cell phone, that's how bad it was. He said I had two choices: either he could see me in his office at 12:30 or he could just admit me to the hospital. I chose the hospital and he said he knew it must be bad if I was asking to be admitted! So I texted Chris and told him and he came home about 8:30 and helped me pack some stuff and off we went. They had a really hard time getting an IV in, I think because I was so dehydrated. Dr. Smith had asked me on the phone if I wanted to just get a PICC line (Peripherally Inserted Central Catheter), or try an IV first and I said lets try an IV. Well when they finally got it started, it was right at the bend of my arm and every time I moved it stopped working and beeped really loud, so the next day they ended up putting in a PICC line anyway. That was actually really nice because that meant no more pokes for blood or anything the rest of the time! Here is a picture taken the first day there. Sadly, I probably look the best in this picture. As the days went on I think I looked worse and worse, haha.
I was there for 7 days, from Tuesday to Tuesday and I feel like the time just disappeared. I feel like I hardly remember anything! The first day was kind of boring. Once everything got started, and I got a morphine PCA pump (Patient Controlled Analgesia-a button I could push every hour to give me morphine) then I started to feel a little better. I watched like 4 episodes of Reba on TV that first day, haha! I was really upset though, because I had to go down to x-ray twice. When I got there the first time they said they didn't see where a pregnancy test had been done (even though the nurse had said they were doing one) so they wouldn't take the x-ray because they weren't sure I wasn't pregnant. So later we had to do the whole thing over again. I was almost in tears, it was so frustrating. My mom came down that night and I think she stayed the night at our house that night and was there the next day too. Details and days get a little blurred to me so this might not be entirely accurate. I will have to ask Chris for sure.
Here is a picture of my mom and I-again I have no idea what day this was. I am wearing a pediatric gown that they found for me, that fit me more like a t-shirt so that was nice. I wore pajama pants the whole time too, which was a lot more comfortable. The nurses wouldn't let me wear my own shirt for the first few days but finally I talked them into it. :) The first couple days I had the pain button, but it was causing my blood pressure to go really low, giving me headaches and making me dizzy and lightheaded when I got out of bed. I was so out of it and weak that 1-2 people had to help me up to the bathroom. The first night Chris got up a million times with me, after that I mostly just started asking the nurse to help me so he could sleep. Chris slept in a chair that reclined all the way flat most of the time. The last few nights he usually moved over to the couch sometime in the middle of the night-I don't think either were very comfortable, poor guy!
I don't remember if it was the first or second night, but there was one night when I had some sort of anxiety attack or something. I was breathing really heavily, which concerned the nurse so she checked my oxygen but it was fine. I couldn't calm down for some reason and started crying. Chris and my mom and the nurse were all trying to help me. It took me awhile but finally I got over it. I don't know what happened. I remember apologizing and the nurse telling me I didn't need to be sorry for anything.
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I don't remember if it was the first or second night, but there was one night when I had some sort of anxiety attack or something. I was breathing really heavily, which concerned the nurse so she checked my oxygen but it was fine. I couldn't calm down for some reason and started crying. Chris and my mom and the nurse were all trying to help me. It took me awhile but finally I got over it. I don't know what happened. I remember apologizing and the nurse telling me I didn't need to be sorry for anything.
After a couple days they changed the pain medicine they were giving me so that I was getting pills and IV medicine. This seemed to work better and didn't make my blood pressure go so low. I was also getting IV steroids, antibiotics, fluid for the first couple days, and my good ol' dietitian friends started me on something called Procalamine. It's a form of nutrition support we use in the hospital. It is meant to just be supplemental and can be given in just an IV (it doesn't have to be through a PICC line like TPN does, although mine was because a PICC is what I had). I was probably getting 500 calories or so from it. Everyone was very concerned about how I was eating. The first day I was on a Clear Liquid diet, and my friend Melissa who I work with called the Dr and got it changed to Full Liquid and also started me on a calorie count! That is something else we do when someone is not eating very well. The nurses wrote down every single thing I ate for 3 days so that they could calculate how many calories and how much protein I was getting. I don't know the results, but I know that most of the time I was there I just drank milkshakes and Ensures. One nurse even started me on TwoCal. It's a supplement like Ensure, only with even more calories and protein. We write orders to give 2 oz four times/day to patients that aren't eating very well. It tastes pretty good, but it's really thick and hard to drink a lot at once, so if we give 2 oz at a time with medications, then they get 500 calories out of it by the end of the day. I'm used to people telling me I need to eat, and I was trying, but I just did not have an appetite at all. One thing I did discover that I could eat was a cheese casadilla. I ordered that twice and both times ate 3/4 of it. I couldn't even eat very much mashed potatoes or pasta (which are two of my favorites) when I ordered them, but for some reason the casadilla was good. The second day I was there one of my nurses upset me a little bit. I shouldn't have let it get to me, but let's remember I was very sick and tired and not in a great mood. She started asking Chris (right in front of me as if I wasn't there) how I normally eat and if I pick at my food, etc. He told her I eat good when I feel good. She then asked me flat out if I'm anorexic! I told her no, I'm sick. She was asking me about my weight history. I lost about 10 pounds a few months ago, but lately it has been pretty stable, and I had actually gained 2-3 pounds back. She gave me a lecture about how important it is for me to gain some weight and eat better (and she knew she was talking to a dietitian). One time she caught a glimpse of my back and asked if I have scoliosis. I said yes, and then she said, "oh my gosh you are so skinny!" As time went on I did start eating a little more and that's one thing the Dr was happy about when I left. When I told him I ate 3/4 of a cheese casadilla, he said that was great and then asked if I wanted to go home. (More about that later).
One day I was with it enough to play a game of Five Crowns with my mom and Chris. I don't think we played a whole game but it was nice to do something besides just sit there. Most of the time I feel like I just slept and did nothing. I brought a book, and Chris' stepmom gave me a book with word searches, sudoku, etc, and we brought a couple movies, but I never had any energy to do that. Even getting on the internet to look at Facebook for a second would put me to sleep. Anytime I tried to send a text message I swear it took me 20 minutes because I was so tired. I watched a little bit of TV during the day, but hardly any at all. In the evening we would watch American Idol or something and I usually couldn't stay awake for that either. The IV pain medication and nausea medication just made me so tired. Chris said I said a lot of funny things, which I don't remember. I asked him once if he talked to "Sister Leiser." I also asked him if the books were all at the back of the line. (I know it doesn't make sense). There were a couple other things that I will have to ask him about and add later because I don't remember. Anyway, I think he got a good laugh.
After a few days I finally decided I could get up and walk around a little bit. I usually could not last very long and would end up being pushed around in a wheelchair, but it was nice to get out of the room.
Chris laughs every time he sees this picture. He said I was so tired at this point that I was talking with my eyes closed. I asked him to take a picture of me and when he told me to smile, I looked up and smiled, and then went right back to having my eyes closed. Glad I could give him a laugh. :)
So basically every day we were just waiting for me to feel better. The Dr would tell me to see if I could go without the IV pain medication, and I never could. It didn't even seem like I was there for 7 days (I'm sure it did to my mom and Chris), time just went by. Looking back I wish I had been a little more with it and able to ask more questions about other things we could try, etc. While I was there one day I noticed that my throat was really sore. I looked at it with a flashlight and it looked terrible, with lots of white spots on the back (sorry if that's gross). It honestly looked like I had strep throat. My tongue also looked like it had thrush, which I have had before when I've taken antibiotics. The nurse called the Dr that night and he said he would look at it in the morning. When he did he said it was probably either strep or thrush and that the antibiotics should cover it if is strep, and he started me on another medication to help the thrush. My throat started to feel better and within a couple days looked a lot better. Ever since then I have developed some sort of cough/cold. I have been blowing my nose like crazy and had this really bad sounding cough. It has not been too fun. I think it is finally going away though. I don't know if I caught it in the hospital or what, but I guess it could have been worse.
After a few days I finally decided I could get up and walk around a little bit. I usually could not last very long and would end up being pushed around in a wheelchair, but it was nice to get out of the room.
Chris laughs every time he sees this picture. He said I was so tired at this point that I was talking with my eyes closed. I asked him to take a picture of me and when he told me to smile, I looked up and smiled, and then went right back to having my eyes closed. Glad I could give him a laugh. :)
So basically every day we were just waiting for me to feel better. The Dr would tell me to see if I could go without the IV pain medication, and I never could. It didn't even seem like I was there for 7 days (I'm sure it did to my mom and Chris), time just went by. Looking back I wish I had been a little more with it and able to ask more questions about other things we could try, etc. While I was there one day I noticed that my throat was really sore. I looked at it with a flashlight and it looked terrible, with lots of white spots on the back (sorry if that's gross). It honestly looked like I had strep throat. My tongue also looked like it had thrush, which I have had before when I've taken antibiotics. The nurse called the Dr that night and he said he would look at it in the morning. When he did he said it was probably either strep or thrush and that the antibiotics should cover it if is strep, and he started me on another medication to help the thrush. My throat started to feel better and within a couple days looked a lot better. Ever since then I have developed some sort of cough/cold. I have been blowing my nose like crazy and had this really bad sounding cough. It has not been too fun. I think it is finally going away though. I don't know if I caught it in the hospital or what, but I guess it could have been worse.
Anyway, the Dr discharged me I think because he didn't see any reason for me to still be there, except I was still having a lot of pain. The whole time they said my labs looked fine, x-rays and CT scan looked normal. Basically they didn't know why I was so sick.
This picture was taken right after I got the PICC line in and right before they took the IV out. Pretty cool huh? haha
The picture below is the PICC line after they removed it. Can you believe all this was inside of me? A PICC line basically is a line that goes to your heart and can stay there for weeks or months if need be. It can be used to draw blood and is very convenient. I was actually disappointed that they took it out. I asked the Dr. if we could leave it in just in case I needed it anytime soon and he said, "Well you don't plan on being back here in the next 6 months, do you?" Well of course I don't plan on it, but I didn't feel ready to go home in the first place. I should also point out that when I say "the Dr" I do not mean Dr. Smith. He admitted me and saw me the first day, but then the GI doctors on call took turns seeing me. I thought it would be a good thing, and maybe a different Dr would think of something that Dr. Smith hadn't. I was really surprised the day that Dr. Ward asked if I wanted to go home. I had still needed IV pain medicine during the night, but as I said earlier he was happy that I was eating better and said I could go.
In the past Dr. Smith has admitted me even when he wasn't on call and seen me while I was in the hospital. Except if it was the weekend, then the on call Dr would take over for a couple days. He explained to me that things are changing in the practice and basically he doesn't have as much say or control as he would like. He said they are trying to lesson their work load, so when a patient is admitted, they should be admitted through the emergency room or their primary care physician, and then the GI Dr on call should be consulted to see the patient. So basically if he is not on call, he does not have the power to say whether I should have been discharged or not, etc, etc. I think if he would have been on call while I was there things would have gone a little differently. He said he would have given me more fluid, for one thing. They were giving me high dose steroids and antibiotics, which usually help, so I was a little surprised I was not feeling better faster.
The picture below is the PICC line after they removed it. Can you believe all this was inside of me? A PICC line basically is a line that goes to your heart and can stay there for weeks or months if need be. It can be used to draw blood and is very convenient. I was actually disappointed that they took it out. I asked the Dr. if we could leave it in just in case I needed it anytime soon and he said, "Well you don't plan on being back here in the next 6 months, do you?" Well of course I don't plan on it, but I didn't feel ready to go home in the first place. I should also point out that when I say "the Dr" I do not mean Dr. Smith. He admitted me and saw me the first day, but then the GI doctors on call took turns seeing me. I thought it would be a good thing, and maybe a different Dr would think of something that Dr. Smith hadn't. I was really surprised the day that Dr. Ward asked if I wanted to go home. I had still needed IV pain medicine during the night, but as I said earlier he was happy that I was eating better and said I could go.
In the past Dr. Smith has admitted me even when he wasn't on call and seen me while I was in the hospital. Except if it was the weekend, then the on call Dr would take over for a couple days. He explained to me that things are changing in the practice and basically he doesn't have as much say or control as he would like. He said they are trying to lesson their work load, so when a patient is admitted, they should be admitted through the emergency room or their primary care physician, and then the GI Dr on call should be consulted to see the patient. So basically if he is not on call, he does not have the power to say whether I should have been discharged or not, etc, etc. I think if he would have been on call while I was there things would have gone a little differently. He said he would have given me more fluid, for one thing. They were giving me high dose steroids and antibiotics, which usually help, so I was a little surprised I was not feeling better faster.
The night that I got home was a really rough night. Chris set his alarm to wake up and give me pain medicine every four hours on the dot. Usually I was wishing I could have it only after a couple hours, though. I didn't sleep much and I felt so miserable. As I said before, I didn't feel lots better than when I went into the hospital so I was really frustrated. I called Dr. Smith again that morning and talked to him. Again he wasn't really in a place where he could do much because he was not on call. He said he could have me get some fluids as an outpatient or I could go to the ER and the on call GI Dr could choose to admit me or not. I chose to go to the ER because I was in so much pain. We ended up being there for about four hours. They basically told me that all my labs and everything looked normal, and that we could control the pain from home. I was pretty frustrated and I felt like the ER doctors felt like I was just drug-seeking. They did give me stuff for the pain which helped, so I guess I was ok with going home. Just frustrated that I didn't feel better than I did. So we went home once again and spent the rest of the day watching a movie and basically doing nothing.
The next day I had an appointment with Dr. Smith. My mom came that day and took me to the Dr, and as I mentioned in a previous post, she helped me do some stuff for Chris' birthday. The appointment went really well and I felt tons better afterwards. Dr. Smith spent at least an hour talking to my mom and I. He went through all my labs and tests that I had had, and what they meant. I really appreciated that because in the hospital we were always just told that everything looked "normal." He said that it looked like I was really dehydrated while I was in the hospital, and it actually looked a lot worse in the ER the day after I got home. They really only gave me fluid the first day or two in the hospital, and gave me a little bit in the ER. He said if it had been him, he would have been "loading me up" and that fluid would probably help me get some of my strength back. I have been extremely weak since I got home, hence the title of this post. All the muscles in my legs have wasted away and there is nothing there! Anyway, he said my liver function labs were a little elevated, which probably represented a little malnutrition in my case. He talked about the sigmoidoscopy he had done a couple weeks earlier and drew a picture and showed me all the places he found inflammation and ulcers. He said it looked worse than the biopsies showed, but he always takes what he physically sees and what biopsies show both into consideration. He said it doesn't look bad enough to cause all the pain I've been having, and that the best explanation he has is that the pain is just from the Crohn's. Even if there is not inflammation showing, that doesn't necessarily mean anything. Basically things aren't always what they seem. It's frustrating but I guess that's how it's been for me for a long time now. We also talked a lot about pain medication. I have been a little afraid of getting addicted to pain medication, so we talked a lot about that. He made me feel a lot better. He said that he is not worried about me getting off of it, and that right now I can't go without it, so basically not to worry too much about it. Once the pain gets better, we can taper off of it. He said only a small fraction (5%) of patients really get addicted to the point where they can't get off of them, and that mostly it is just a mental thing and they like how the medication makes them feel. I actually have been able to take less the last couple days too, so that's good. I think he has a lot different opinion on pain medication than lots of doctors, and he even admitted that the ER doctors probably were reluctant to give me anything because of their own bias and opinions. I had a nurse one night who was the same way. It was the last night I was there and she kept giving me the pain medication 45 minutes-1 hour late, telling me that I needed to "get off of these narcotics before I could go home," etc. It didn't matter that I had the medication ordered, she just was doing her own thing, which was very frustrating. Anyway, we also talked about the fact that they took the PICC line out. If it had been Dr. Smith he would have left it in until he knew I was doing better and wouldn't need it for anything else for awhile. It would have been really nice to have in the ER the next day when it took them several times to get an IV started again and draw blood. He said I might want to think about getting something called a Port-a-Cath. It's basically a needle that goes in your chest, just under the skin, and is there anytime you need access. Nothing hangs out, they just don't have to poke around for a vein because the needle is already there. He said he's not saying I need one, but if I am going to need fluids or something for awhile, it might help. We talked about me even going to get some fluids as an outpatient that day but decided not to because I had been poked so many times already. He said to try to drink lots of fluid over the weekend and see if I could get my strength back on my own and let him know how I'm doing. I called this morning and left a message and said that I am still pretty weak. His nurse called me back awhile ago and said some fluid might help me, so I am going in tomorrow to the outpatient IV infusion clinic to get some fluids. I think it will help a lot. Even though I have been trying really hard to drink enough, I don't think I'm getting enough to catch up. Anyway, I felt a lot better after talking to Dr. Smith, which was refreshing after feeling so frustrated the day before.
I also wanted to mention that I have been in contact with the Dr. in Salt Lake a little too. The day before I went into the hospital I called there to see if I could get an appointment soon. We had talked last time I was there about adding another medication with the shots if I didn't feel like the shots were working well enough at week 12. It was week 10 so I called to see if I could get in to see her in the next couple weeks. They said she was booked through April, but they would talk to her and get back to me. I didn't hear from them for almost a week, when I was in the hospital. When they called back they said that they wanted the report of the sigmoidoscopy that Dr. Smith had done. So I had his office fax it to the U of U, and they called back and said that Dr. Peterson (in SL) had wanted him to biopsy a certain area and test it for something called CMV (Cytomegalovirus). We have talked about it before and done blood tests, but they only indicate whether you had this infection in the past, not whether you have it right then. She had never said anything to me about testing for this, so I was kind of upset, and upset that if that's what she recommended, that she didn't make sure her note got to Dr. Smith. He never got it. We talked about it at the appointment and he thinks he can use the biopsies he did take and have them tested for CMV. Basically it's a virus that people with Crohn's and Ulcerative Colitis could be more likely to get, and is rare but would be worth checking, because it is something that could cause pain. He wanted me to try to call them again to send her note to him, so I did and was a little disappointed with the response I got. They basically said that that was her suggestion (at least I think-the lady who I talked to actually indicated that the Dr may be getting me mixed up with another patient, which may be why I never heard anything about this before). The person I talked to said she couldn't find the note and send it because I had seen the Dr at a different clinic that she doesn't work at and it was basically impossible. (Dr. Peterson sees patients at the U of U and at a clinic called the Redwood Clinic, and I've seen her at both places). I had also asked if she thought increasing the dose of the shots would help, and Dr. Smith wanted her opinion in that as well, and they basically said, "If Dr. Smith thinks that would help, she would respect that." They said if I still have problems then I can call again and come back to see her. I thought the whole thing was strange and probably a big misunderstanding. First they acted upset that Dr. Smith hadn't done what she recommended, then acted like they didn't care and he could do whatever he thought was best. So I guess he is going to try to run that test without having to do another sigmoidoscopy (pray we don't have to do ANOTHER one)! If it is positive there is a certain antibiotic they use to treat it. Maybe we will try the shots every two weeks instead of once a month. I don't know, we still need to decide.
Sorry this is going on so long, but as I always say, I write this more for myself than anything else, so I have to write it all down before I forget. I just want to take a minute and say thank you to everyone that helped us these last couple weeks. As I mentioned before, Chris did not really have any more sick days to spare. He was with me the first day and the next day because he always has Wednesdays off. He went to work Thursday and Friday and my mom came and stayed with me. My Aunt Lora went to work for my mom so my mom would still get paid. We are so thankful for my Aunt and everything she did so my mom could be there with me! Chris was with me of course over the weekend and didn't go to work Monday. My mom offered to come again, but Chris wanted to stay with me. :) On Sunday our Elder's Quorum President and someone else from the ward came and gave me a blessing. I had also received a blessing from Chris and my Uncle Blaine the first night there. Chris went to work on Tuesday and my mom came again, while my Aunt Lora worked for her again. We weren't expecting me to go home on Tuesday, so when I texted Chris and told him he was kind of surprised. My mom got there right after the Dr was there and helped pack all my stuff and took me home when it was time. She cleaned our whole house that day: did the bathrooms, vacuumed, dusted, cleaned the kitchen, etc. It was a huge help. Chris' stepmom brought us dinner that night, which was yummy and Chris ate it for lunch the rest of the week. The next day my friend Melissa from work (who also was in our ward until a month or two ago) brought us another yummy dinner, and we got another dinner from my visiting teacher. Saturday my mom was coming to Twin to pick up my sister's kids since my sister and her husband went to Las Vegas for a weekend trip they had been planning, and she brought us dinner that day-actually two dinners! She made us lasagna and chicken casserole, two of our favorites. She also made homemade rolls and brought salad. We put the chicken casserole in the freezer so we will have it when we finish the lasagna. Our family also fasted for me on Sunday and I can't say how much I appreciate everyone's love, concern, and prayers. I got lots of visitors and everyone was always calling my mom and Chris to see how I was. I got flowers from everyone at work, my Aunt Bev, and Chris' dad and stepmom. My sister bought me a way cute necklace from Vanity, which cheered me up quite a bit. :) Chris' grandparents brought me a box of chocolates that I have been working on. I have officially now eaten half of the box all by myself! (Remember Chris is not big on sweets). Anyway, as hard as times like this are, it's good to know how loved I am. It is overwhelming sometimes to think of all the people who are there for us and what great families we have. We have definitely been blessed! I have been so lucky to have Chris. He always knows what to say to make me feel better, he is so faithful and strong in the gospel, and so patient with me. He never complains about losing sleep when I am sick, he still gets up and goes to work every day, and helps so much with laundry, dishes, cleaning, and everything. Oh how I love him!
Here is one last picture of my arm after I took the bandage from the PICC line off a couple days later. It looks better than I expected. I've got some other pretty good bruises from IVs and times they poked me. Good battle wounds. :)
Well sorry for the marathon post, I had more to say than I thought! Good thing I have nothing better to do than sit here on my bed on the computer! Right now I am hoping to be able to go back to work next Monday, a week from today. I don't want to go until I'm much stronger and feel better, because I don't want to get run down again. I am also probably not going to go back full time, but haven't decided how many hours I will work yet. We will have less money, but I don't think working full time is worth the effect it has had on my health. Hopefully I will do better, which will save some money on Dr bills, and come out even in the end. So we are just trying to have faith that everything will work out! I also ran out of sick time last week, so as of right now I'm not getting paid. I'm hoping to qualify for something at work called "Employees Helping Employees," which is where people donate their extra PTO, and others who need it can apply for it. I know everything will be fine and we will get through it. Things are already starting to look better. I know that my Heavenly Father loves me and will never leave me alone!
March 16, 2012
My Wife Jill
Well sorry for the marathon post, I had more to say than I thought! Good thing I have nothing better to do than sit here on my bed on the computer! Right now I am hoping to be able to go back to work next Monday, a week from today. I don't want to go until I'm much stronger and feel better, because I don't want to get run down again. I am also probably not going to go back full time, but haven't decided how many hours I will work yet. We will have less money, but I don't think working full time is worth the effect it has had on my health. Hopefully I will do better, which will save some money on Dr bills, and come out even in the end. So we are just trying to have faith that everything will work out! I also ran out of sick time last week, so as of right now I'm not getting paid. I'm hoping to qualify for something at work called "Employees Helping Employees," which is where people donate their extra PTO, and others who need it can apply for it. I know everything will be fine and we will get through it. Things are already starting to look better. I know that my Heavenly Father loves me and will never leave me alone! March 16, 2012
My Wife Jill
Today’s blog post is being written by Chris, the husband. Not Jill, the wife. Jill’s blog is sacred territory to her so I hope I don’t get in trouble for hijacking it but I just want to tell you all how great she is. Jill is always saying wonderful things about me on here (most of it is untrue). I think I’ll tell everyone about her for a change.
My life has gotten better everyday since I met Jill. She makes it so easy to be married to her. She has been such a support to me. She doesn’t feel like she does a lot but she does so much. She’s actually the reason why I got accepted to Penn State for graduate school. I was so sick of filling out school applications. I got real discouraged one day a few months ago and almost didn’t finish the application for Penn State. After a few hours of moping around, I found a note on my bathroom mirror that said, “ Chris, I just want you to know I love you so much. I am so proud of you and I know you can do anything you want to. Love, Jill.” I don’t think Jill realized at the time how much that note meant to me, but I decided then that I couldn’t let her down so I got the computer back out, finished the application, interviewed on the telephone a few weeks later, then got accepted to Penn State Graduate School a few days after that. She is such an inspiration to me. I don’t know how she deals with her sickness so well. Jill has been dealt a tough hand and she’s played it well. Even with her sickness, she is a great help and support to me. I hope this wasn’t too mushy for you all, but I really wanted to make sure everyone knew how great she is.
Love you Jill.
Chris
PS.
I’m also grateful for those little bottles of 5-hour energy that allow me to stay awake most of the night with Jill and then go to work the next day.
Jill is thankful for nurses who can insert an IV into a vein in one try. (They are few and far between but she loves them.)
Lastly, we are thankful to Ameriben, Jill’s health insurance company.
We are incredibly blessed and have much to look forward to.
March 24, 2012
Unexpected Turn of Events
I thought that I would try to write an update on what's been going on. Actually a ton happened but I'm going to try to make this as simple and to the point as I can but it might still be a bit lengthy.
So since my last post I continued to improve little by little everyday. Last Wednesday (the 14th) we took a trip to Logan to visit a friend of Chris' dad who we were going to talk to a little about what she knows about Crohn's and diet, etc. As the day went on I began to feel worse and worse and by the time we reached her house I was in a lot of pain. We were there for awhile before I was in tears and decided that we needed to go to a hospital. I was having symptoms of an obstruction, and hadn't been able to go the bathroom since we left our house that morning. We drove to a hospital in Logan and went to the ER. I was in so much pain all I cared about was getting some relief. They gave me pain meds, but had to give it several times before the pain was even bearable. They did a CT scan and said that it showed maybe some air and stool in the intestine, but nothing too significant. At this point I had never been in this much pain before in my life. I cried. A lot. I really didn't think that the hospital in Logan would try to make me go home in that much pain, especially since my home was 3 hours away, but they basically made me leave. We stopped at a gas station before leaving town and I didn't think I could make it. I threw up some (I had also thrown up CT contrast in the ER) and I told Chris I could not ride in a car for 3 hours, but he said we just needed to get me to Twin because they are familiar with me and could help me more and that the ER in Logan would just send me home again. Luckily Chris' dad was with us so he drove while I laid down on Chris' lap in the backseat. Now at this point I thought it was the worst pain I had ever experienced and the worst/longest 3 hours of my life. Chris gave me a blessing and I was able to sleep some, and eventually we made it to Twin.
We dropped off Chris' dad but I wouldn't even let Chris take me home, so we went straight to the hospital. They gave me more pain medicine but I was still in so much pain I could hardly stand it. We weren't in the ER for very long when they told me that Dr. smith was on call and was admitting me. Chris went home about 5:30 so he could get ready for work and his dad came back and stayed with me until my mom got there about 7ish. They did an x-ray which showed lots of stool in my intestine so Dr. Smith wanted to do a sigmoidoscopy to help decompress it and get it out. (BTW, sorry if this is TMI). They weren't going to be able to fit me in until the afternoon but I was in so much pain that they were able to bump me up to 10:30. I was really happy that Dr. Smith was actually on call and I felt he wouldn't stop trying until he had some answers. Well I remember waking up from the procedure and Dr. smith explaining to me that they were going to life flight me to SL to the U of U Hospital. It was all kind of a blur after that. My mom texted Chris and told him he needed to call her so he took his break early. After talking to her he told his supervisor that his wife was being flown to SL and went home and packed some things and came to the hospital. Dr. Smith was able to clean out my J-pouch quite a bit, but when he could actually see the intestine itself, it looked sort of blue and like it was not receiving the blood flow it needed for the tissue to survive. He said he'd never seen my pouch look like this before. He wanted me to go to SL in case I needed surgery, they needed to remove or reconstruct my pouch, etc.
We were originally going to fly in a helicopter, but the weather was bad so we had to take an ambulance to the airport and get on an airplane and then fly into the airport in SL and taking an ambulance to the U of U. My mom drove Chris' car to SL and Chris rode on the plane with me. I was a little disappointed that he couldn't sit in the back with me because there wasn't room for him, but he got to sit in the very front with the pilot which he thought was way cool.
Well I wrote this above part a few days ago when I was feeling a little better....
After all this, a bunch of other stuff happened that I will write about in another post. But I just want to give an update of where we are right now. Here is a message that Chris sent to his family that explains what happened.
Sunday, March 25, 2012. 5 PM.
This message will be too long for a text message so I'm sending it on Facebook. Jill was scheduled for a sigmoidoscopy for tomorrow morning to get some biopsies to test for a few viruses. They moved the procedure to this morning at 11. They went in and got some biopsies. After she woke up, the doctor thought it might be a good idea to get a few more biopsies to test for a few other things. When going in the second time, they noticed a perforation in the bowel about 1 inch in. They immediately withdrew the scope and let Jill wake back up. They x-rayed her and compared it to previous x-rays to when the perforation occurred. They found that it happened this morning the first time they went in. It was decided that it probably wouldn't heal on its own and they didn't want to risk that especially since there was a lot of stool in her intestines that could escape into her abdomen and contaminate other organs. All this happened from 11 this morning till 4 this afternoon. She went into surgery at 4:10 this afternoon (Sunday). It's expected to take 3 hours give or take 30 minutes. Her J-pouch is in such bad shape that they want to give it time to heal so she will wake up with an ileostomy bag. It's supposed to be temporary but it might be permanent if the J-pouch doesn't heal. They are going to fix the perforation with some tissue from the J-pouch. While she is in surgery, they will try to repair any of the strictures that are accessible. It's called strictureoplasty if you'd like to look it up. As the week has gone on, it's been more likely that she would have surgery on Thursday. It's unfortunate that there was a perforation but because of it, the surgery on Thursday is cancelled so we might be coming home sooner than we thought. I gave her a blessing and she gave me a smile before they wheeled her into the operating room. Hope to see everyone soon. We appreciate the prayers and all the help.
Sunday, March 25, 2012. 7:15 PM.
The surgeons just came out to talk to us. Her J-pouch looked really bad and in terrible shape. Some of her intestines and the J-pouch were actually out of place and looped around each other so they decided to take out the J-pouch. They told us that her intestines were in good shape and not to a point to cause all the pain she's been having. The surgeons were optimistic that she should feel much better when she recovers.
Monday, March 26, 2012. 1:30 PM.
Jill’s Mom and I saw Jill right after surgery last night and she was in good shape. I had never seen anyone after surgery so I didn’t know what to expect. All her doctors and nurses were very surprised at how well she was doing considering how malnourished she was. I took their word for it that she was doing good cause to me, it looked like she was hurting bad. I guess that could be expected though. They put her in the Surgical ICU because of how suppressed her immune system was and they thought she might become septic. But she’s doing great. It was hard to leave her last night but Nada and I needed some sleep. We came in again this morning and her bed was tilted up and she was watching TV. She’s been on two walks this morning. The doctors are very pleased that she is doing so good. Her small intestines are in good condition. They had to remove 30 centimeters of the end of it but the rest of it was good. She also woke up with hardly any feeling in her left arm. The doctors think it may be from laying on it during the surgery and that maybe a nerve got pinched. They think it will get better over time. Overall, she is doing better than expected. Doctors say 7 to 10 more days in the hospital for recovery.
Monday, March 26, 2012. 1:30 PM.
Jill’s Mom and I saw Jill right after surgery last night and she was in good shape. I had never seen anyone after surgery so I didn’t know what to expect. All her doctors and nurses were very surprised at how well she was doing considering how malnourished she was. I took their word for it that she was doing good cause to me, it looked like she was hurting bad. I guess that could be expected though. They put her in the Surgical ICU because of how suppressed her immune system was and they thought she might become septic. But she’s doing great. It was hard to leave her last night but Nada and I needed some sleep. We came in again this morning and her bed was tilted up and she was watching TV. She’s been on two walks this morning. The doctors are very pleased that she is doing so good. Her small intestines are in good condition. They had to remove 30 centimeters of the end of it but the rest of it was good. She also woke up with hardly any feeling in her left arm. The doctors think it may be from laying on it during the surgery and that maybe a nerve got pinched. They think it will get better over time. Overall, she is doing better than expected. Doctors say 7 to 10 more days in the hospital for recovery.
Wednesday, March 28, 2012.
This is Jill again. I am doing much better. The biopsy that they did to test for the virus CMV came back positive. The doctors think this caused the problem with the J-pouch. I was moved out of the ICU Tuesday. I was having a lot of pain the first couple of days but we think we've got it under control now. They left my incision partially open because of the risk of infection but they are planning on closing it with staples tomorrow. The feeling in my arm is coming back slowly. I am able to lift it up some and grip some things which I could not do right after surgery. They are still concerned about my nutrition status but I did get to drink juice yesterday and I might get to have Jello today. I am still receiving TPN. Last night I went outside for the first time in almost two weeks. Today I get to wash my hair for the first time since Friday! Because of all this, I have a permanent ileostomy, but I am looking forward to feeling good again! Things are going better than the doctors expected and hopefully we will be able to go home early next week. Thank you for all your prayers, fasting, thoughts, phone calls, visits, love, and support.
March 31, 2012
Just FYI
March 31, 2012
Just FYI
Yesterday was a hard day. They took me off of the PCA pump and changed to pills. I was in a lot pain (I think because I slept really good during the night, meaning I wasn't pushing the button, and so I got behind on pain medicine and it took a long time for for the pills to kick in). I was really nauseated and they scheduled nausea medicine every 4 hours so that helped. I basically layed in bed most of the day barely moved and eventually felt better. I was able to drink some Ensure and eat some soup later and actually showered in the evening, which felt really good. Today was MUCH better and I felt pretty good all day.
My left arm is improving slowly. The occupational therapist has worked with me a lot which has helped. It is still somewhat numb but it's getting stronger. The OT said all my range of motion is there, it's just a strength thing. He said it would help if I continued to have therapy 2-3 times/week for awhile. He thinks it should get back to normal just fine. I'm not as worried about it as I was. I can touch my finger to my nose now and have more coordination so that's good. I feel like a stroke patient sometimes, haha.
It looks like we have lost my phone and iPod so that's pretty sad. I love my iPod. The day I went down for biopsies we left them in the room because we were only planning on being gone for an hour. Then I ended up having surgery and moved to the ICU and when my mom and Chris went back to get all our stuff, it had been packed up and taken out of the room. They never could find my phone or iPod. The hospital really felt bad and did everything they could to help us but to no avail. I have the "find my iPod" app but it couldn't pick it up and there has been no activity on my phone like someone's used it. The phone finally started going to voicemail after a few days. Maybe they will still turn up, we"ll see. Anyway, start messaging me your phone numbers on Facebook so I have them. :) We will get me a new phone when we get home.
So that's how things are going right now. Once again we are so thankful for everyone's love and prayers. They have definitely been felt. I will try to update this a little and when I get home and can fill in all the blanks and post some pictures. :)
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.April 3, 2012
Home Sweet Home
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!
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.
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.
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 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 doctor 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!Well I did not intend for this to be so long, but oh well. Here's to a better week!
April 24, 2012
U of U Hospital Stay
We went on lots of walks and sometimes we would go outside, which I really liked.
This picture was taken right before I had another sigmoidoscopy, only they called it "exam under anesthesia" because they actually used general anesthesia to put me completely under, instead of just sedation. They were hoping to really find the problem and be able to clear some of the strictures (that they thought were there at the time). This time instead of using air, they used CO2, which just gets absorbed into your body and you don't have to let out, so it's a lot less painful afterwards. I was very clear that I did not want to experience what I had a couple days before, and they assured me that the CO2 would be just fine, and it was. However, they could hardly accomplish anything because of how narrowed everything was, so I still didn't have the relief from the pain that I was hoping for when I woke up.
Another day I had another sigmoidoscopy, (and they used CO2 again), which still didn't really help. Later that day I had to have a test called a barium enema x-ray. Yeah, it's as much fun as it sounds. I cried through the whole thing. Chris and my mom had to wait in a waiting room down the hall. When I was being taken back to my room the transport guy made me so upset. He was going so fast, over bumps, around corners. I had just had these two horrible procedures and was in so much pain and he was clueless. One time he seriously almost ran someone over going around a corner. My mom and Chris thought he was crazy too. In Twin the transport people slow down and warn you when there's a bump, and are really careful. I was not a happy camper.
This pic below is in the surgical ICU the day after surgery. These pictures are out of order, but oh well. I was in the ICU for 2 days. It was great fun. I had an NG tube down my nose and all kinds of things hooked to me. I was in terrible pain the first night but they finally got it under control. I was happy to leave the ICU though.
This picture was before I had surgery, on a day when I had just showered, so I don't look too bad.
This is getting off the plane when they life flighted me to Salt Lake. That was a fun little experience. I was in a lot of pain and I remember that first night in Salt Lake it took a long time to get a nurse in my room and to get any pain medicine. I was pretty miserable.
This is one of the first days in Salt Lake. All in all I was there for 17 days. It seemed like forever. Poor Chris and my mom had to sleep on a pull out couch and a cot. Luckily though Chris' dad brought his camping trailer and parked it in the parking lot after we had been there for a few days. Then Chris and my mom took turns sleeping in the trailer. They would trade off every other night. My mom was actually just telling that she really liked that because she could sleep in a bed and get a good nights sleep, and catch up from not sleeping as well the night before, and it really helped her not get worn out or exhausted. I also was glad that I was able to have someone with me every night.
That's right. After weeks of slowly decreasing the dose I was taking, I finally took my last prednisone pill a few days ago. Very exciting. I can tell the swelling in my face has started to go down, which makes me very happy. I have been feeling very good (with the exception of last week, I had a few rough days), but I am doing so good. I am now no longer taking anything for Crohn's disease. Dr. Smith would like me to take something to prevent inflammation from flaring up again, but we will see. I really don't want to.
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.
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. I had 3 IV poles full of stuff, plus all the monitors and machines.
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.
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 doctor 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!Well I did not intend for this to be so long, but oh well. Here's to a better week!
April 24, 2012
U of U Hospital Stay
Well I wanted to post a few pics from when I was in the hospital. There are still a few things I wanted to write down as well, just so I don't forget them. This post might be kind of random, with just certain experiences that I want to remember, not in any particular order. The first few days I was in Salt Lake we basically did a lot of waiting. They kept saying that I had a blockage, or strictures, or narrowing in my intestines. I was in tons of pain. They were trying to avoid surgery if at all possible so they were trying a lot of other things first. I saw several teams of doctors-GI doctors, GI surgeons, internal medicine doctors, general surgeons, etc. It was a little frustrating at first, because they would all want to do different things (start TPN, not start TPN, etc). Finally after a few days the GI surgeons decided they would pretty much take charge and had me moved to the surgical floor. The GI doctors also continued to follow along.
After a few days they decided to do a sigmoidoscopy, with the purpose of trying to open up some of the narrowing and strictures. I hoped and expected to wake up feeling better, with some of the problem fixed. That did not happen. I pretty much woke up screaming in pain. I had never been in so much pain-even worse than the car ride from Logan, and remember I said that that was the worst pain I'd ever been in. The nurses in recovery obviously didn't know anything about my situation because they just kept telling me I'd feel better if I passed some of the air that was put into me during the procedure (they pump you full of air to help them see things better). I tried to tell them that I hadn't been able to pass anything, even air, in a week. My mom and Chris were in the waiting room and they wouldn't go get them-they were going to just take me back to my room. When they wheeled me past the waiting room I saw Chris and told them again them my husband was waiting for me so they went and got them. I was mad because I had been told they would be brought back and be with me when I woke up. We went back to my room and the next few hours were the most miserable I had ever experienced in my life. I just cried and cried. Chris and my mom just stood by my bed for like 3 hours. I kept saying that I couldn't handle it any more, and I really thought that I couldn't handle the pain for another minute, and then of course another minute would go by. Doctors came in and gave me pain medicine, but it didn't help a ton. I think they were afraid of giving me too much. Eventually I threw up a bunch and they gave me some medicine for nausea which eventually put me to sleep. It was a horrible experience that I never want to relive again. It was awful.
Anyway, that was one experience I wanted to write about. Here are a few pics:
Sometimes I would come back from the bathroom to find Chris in my bed.
This pic below is in the surgical ICU the day after surgery. These pictures are out of order, but oh well. I was in the ICU for 2 days. It was great fun. I had an NG tube down my nose and all kinds of things hooked to me. I was in terrible pain the first night but they finally got it under control. I was happy to leave the ICU though.
Speaking of having someone with me during the night, there was one night that I woke up and realized that my ileostomy bag was leaking. I pushed the call button and then called for Chris loud enough that he woke up. At this point my incision from my surgery was still open and they did not want it to get infected. I didn't either. In fact I was terrified that now that everything was leaking everywhere, that it was going to get infected. The nurse came and cleaned everything. When she first got there, she said, "You need to tell us when it gets full so this doesn't happen." I was mad that she said that. I was sleeping and didn't know....Anyway, I was crying, and I was so glad Chris was there. She assured me that she cleaned everything really well. It took a long time to take care of it though, it was kind of a traumatic experience. By the time we were done it was like 5 in the morning and I called my mom and wanted her to come then. I felt bad for waking her up, and even though Chris was there, I guess I needed someone else to tell me it was going to be ok too. And of course she was happy to come.
Well those are the main things I wanted to write down before I forgot them. I may think of more things later and add another post, but this is good for now. The University of Utah is a great hospital and I had great doctors and nurses there, even though the things I wrote didn't sound like that. I was glad that I was there and thankful for the help that I finally got.
May 26, 2012
Recently
Just wanted to post about some of the things we've done recently. One night Chis and I went to his Grandma and Grandpa's and went swimming in their pool. It was so nice, we hadn't been able to do that in awhile. On the way there we stopped and took this picture of Shoshone Falls. Usually we see them from a different place, but they were really pretty from this view.
Last weekend Chris went camping with my dad and brothers and they had tinfoil dinners, and ever since then, Chris wanted them again. So Monday night we went to his dad's to cook them (with the dogs and llamas) :)
They turned out delicious!
Last week was a little rough. First off, on Tuesday I went out to our mailbox to mail the thank you cards, and on the way back I tried to take a big step/hop over a line of ants (I wasn't wearing any shoes). Well turns out my legs still aren't as strong as I thought they were and so my knees were bent and I didn't have the strength to straighten them, so I stumbled and fell and hit my jaw on the cement front porch and bruised it, and scraped my wrist pretty good. I also ended up with a pretty good bruise on the side of my hip and a couple on my leg. It hurt pretty bad. I sat on the ground for a minute or so and then scooted myself onto the steps and stood up and went inside....then I cried. :) Mostly just from emotions I think, it kind of scared me and frustrated me. But I was ok and I got over it.
Wednesday afternoon we went to watch our nephews play baseball (my nephew Kalan was playing Chris' nephew Calvry). I was kind of not feeling well and was really tired but I wanted to go anyway. I only last about 20-30 minutes before I had to leave. When I got home I had really bad body aches and I had a fever. I took tylenol but it took the rest of the night for the fever to go away. I went to bed and the the next day I woke up and felt fine. Friday I went to a pizza party they had at work (to celebrate being fully staffed again since I was coming back, the girl who had been on maternity leave was coming back, and we hired someone new). Afterwards I drove to Burley to stay at my mom's while Chris went camping with my dad and brothers. About the time I got there I started not feeling well again and had really really bad body aches and chills. My brothers Kyler and Kelby gave me a blessing before they left to go camping and I felt a little better the rest of the night but I didn't feel like going and doing anything so my mom picked up some food from Taco Bandido and a Redbox movie for us and we stayed home and watched that. During the night I had a pretty upset stomach and was nauseated. The next day I had a fever most of the day and stayed in my pajamas and slept. Chris drove to Burley and got me because I didn't think I would be able to drive home. I think it must have just been a touch of the flu, but it was kind of weird. Saturday night I started to feel better and Sunday was much better. I was mad because my mom and I didn't get to do any of the things we had planned and we had planned to go to Chris' dad's and play games with his siblings Saturday night but had to stay home. I guess my immune system isn't quite up to snuff.
This week has been much better-I was able to go back to work! Good thing too because my FMLA ran out and I had used all the paid hours I was allowed from the Employees Helping Employees. I worked for about 4 hours Monday (mostly just checking 3 months worth of emails), 5 hours Tuesday, and 3 hours Thursday. I was afraid that I was not going to remember how to do anything, but it was just like riding a bike. :) Hopefully this next week I can work a few more hours. Wednesday my mom came to do some shopping and errands so I went with her and that was fun. Friday my cousin Jeff on my dad's side got married and I was able to go to the sealing. It was nice to see a few of my cousins who I hadn't seen in awhile. Friday night we went swimming again at Chris' grandparents' with Chris' cousin Paul and his wife Jess. That was really fun. I am just so thankful that I am doing so much better and able to get out and do things now. And I don't feel completely exhausted afterwards. I still have a ways to go but things are definitely much better now and I like it!
June 14, 2012
Doing Good!
Well I just wanted to post an update on how I am doing. I am doing really well! I have actually been able to have time to recover, and have not been back in the hospital (knock on wood). Before it seemed like every time I went home and thought I was starting to get better, I'd get sick again. Luckily that has not happened. I forgot to mention in a previous post that I got the feeding tube removed the beginning of May (I think around May 9). I had an appointment with the surgeon and he asked if I wanted it out, and of course I said YES! It was really sore and just in the way, and I just really did not like it. He said if Dr. Smith said it was ok, then he would remove it. So I called Dr. Smith and he had me get some labs done. He called me that night and said that they looked pretty good. My pre-albumin and albumin were back to normal (those were what the surgeon was concerned about). Pre-albumin is a lab that we use a lot to assess someone's nutritional status. We (dietitians) don't put a lot of stock in albumin, but most doctors do. Anyway Dr. Smith asked if I had gained any weight and I said no, not really. He said I really should keep it in for awhile longer but I told him all my reasons why I didn't want to (basically I was whining). :) The tube feeding was giving me 700 calories at night and I told him I would drink TwoCal which is 500 calories (it's kind of like Ensure but more calories). He said if I did that every day then I could get it out. So I called the surgeon the next day and made an appointment. This was a Wednesday and he wasn't in his office and they said he didn't have any openings until Monday. I was so disappointed-I did not want to wait any longer! But then they called me later and the receptionist said she had talked to the Dr and he said he would see me the next day. So I went the next day and he just pulled it out! It hurt! But I felt so much better after that. It was easier to go about my day, and go out places. He gave me a high five when I told him what my albumin was. I bought some TwoCal at Norco (expensive stuff!) and have been trying to drink it. I have to admit that I haven't been doing it every day, but after getting a lecture from the girls at work, I have decided to try again. Plus, I have now gained 5 pounds. :)
Speaking of work, I went back about 4 weeks ago. The first week I just worked 3-4 hours per day, 3 days. I have slowly been increasing my hours. This week I worked 4 days, 6 hours each day. I don't think I will go tomorrow. I have been getting back a lot more energy, my problem is I have a hard time getting up in the morning so I've had a hard time getting there much before 10 am. But my boss (and HR) have been so understanding. My boss did not even put me on the schedule for June and told me to work when I want for how long I want. For July he put me on the schedule for 4 or 5 days that he really needs me, and the rest I can still do what I want. NICE! But I hope to be able to be working close to full time because we could really use the money.
I have been eating really good and feel really good. My stomach does not hurt anymore. I was getting worried because I was still having problems after I ate for awhile, but then it seemed like one day I just starting feeling tons better. I haven't taken pain medicine in about 3 weeks. I have still been using a pain patch, but I used the last one a few days ago so I won't be using those anymore either and I still feel great. It is so nice. Also I have been going off of the prednisone and just have one week left!! I will be pretty happy when I don't have a chipmunk face anymore.
The bummer thing is now that I have energy and strength again I want to do all my crafts again but don't have time. Before when I was home all the time I wanted to sew my quilt so bad, but never had the energy. But I have been able to work on it after work. I am determined to finish it before we move!
As for my arm, it is slowly getting better. I don't notice it as much anymore. My thumb and pointer finger are still "numb" and it is still weak, but I can do far more than I used to. I saw a neurologist, who called what I have "brachioplexitis" or something like that. He basically said "it happens" and that there's nothing to do for it. He said about 80% of the people this happens to return to normal 80% or more of the time. Ok, that's good odds, I guess. He said it could take 6 months to 2 years to be back to normal. Yay. I just have to remember to use it as much as possible to help it get it's strength back. And I'm just hoping that my fingers won't feel tingly forever.
We have a busy summer planned with almost every weekend booked and I am so excited! Definitely much better than hanging out at the hospital. Everywhere I go at work people (like nurses, social workers, physical therapists, occupational therapists, CNA's, pharmacists, etc) are telling me how nice it is to see me back, ask how I am doing (even people I don't remember, like transport people) and saying how good I look. Yesterday I saw the surgeon and he was so excited to see me. He asked for a hug and then told all the nurses standing around "Look at this!" They said, "we know, we see her every day!" He said, "well I don't, but I guess that's a good thing!" He is so nice. Well stay tuned for some fun things we have coming up, such as weddings, camping trips, family reunions, and more!
June 27, 2012
No More Prednisone!
That's right. After weeks of slowly decreasing the dose I was taking, I finally took my last prednisone pill a few days ago. Very exciting. I can tell the swelling in my face has started to go down, which makes me very happy. I have been feeling very good (with the exception of last week, I had a few rough days), but I am doing so good. I am now no longer taking anything for Crohn's disease. Dr. Smith would like me to take something to prevent inflammation from flaring up again, but we will see. I really don't want to.
I also went to see the rheumatologist today who said I can start taking that medication every other day instead of every day because my arthritis has not been bothering me.
I have been able to start working full days this week, so that's really good as well. I feel so blessed that I am doing so much better!
I just wanted to give a quick update on my health, more for my own records than anything. I have continued to get stronger and feel better. Although I feel like the last couple months I have reached a plateau. I have only been able to gain about 10 of the 23 or so pounds that I lost. I also haven't been trying as hard, but it is my New Year's resolution to gain wt! Chris has been making me smoothies everyday the last week to have in addition to my breakfast I normally eat (which will be super fun to make with our new BlendTec we got for Christmas from Chris' Grandparents)! I am going to have to just start eating more...tonight I actually ate TWO pieces of pizza and TWO pieces of crazy bread, which is really good for me. Chris was so proud.
My rheumatoid arthritis has been bothering me a lot more than normal, so I am taking another medication for that. It won't start working for about a month so she also gave me a weeks worth of steroids to help. This morning my hands are very swollen and just throbbing, hence why I am awake and Chris is sound asleep next to me. (When I started writing this post, it was early in the morning). I have found an essential oil that does help, thanks to Chris' Aunt who told me which ones to try. The rheumatologist had me get some blood work done for a baseline because you have to have it checked regularly while taking the new medicine. My Vitamin D was low, which can cause muscle pain, so I will also be taking a very high dose of that for awhile. One of my liver enzymes was also slightly elevated, not sure why. I have to have that checked again this week.
My stomach is fine for the most part. Except for I just don't have a great appetite sometimes and I can't eat a lot at once. Other than that, I would say I am doing so much better. I go to work everyday and don't feel exhausted like I used to. I used to count down the minutes until I could go home and crawl in bed, and now I can't believe it when it is already 5:00. A couple times a week I even end up working 9 or 10 hours and I'm tired, but I'm not dying like I was before.
Anyway, that's where things are at right now. I am so thankful to my Heavenly Father for my health everyday. It is something I definitely don't take for granted! (On a side note, we found out a couple weeks ago that my $120,000 bill from the University of Utah was paid 100% by the insurance, when we were originally told they would pay 60%)! Thankful for blessings everyday. :)
November 18, 2012
Don't Worry I'm Alive
I have been feeling really good. It's so nice to not constantly be sick. I have not been able to gain any more weight but I'm going to start trying really hard again. I have mustered up some motivation so we'll see how that goes. :) I know that it's important for me to gain weight if I want to be able to get pregnant, (which is still a ways away, btw). Anyway, I am still recovering and getting stronger, but things are so much better than they were. I thank my Heavenly Father everyday that I'm getting healthy again.
So I guess that sums up our life right now. We are super excited to be able to go home for Thanksgiving in 3 days! Yay!
December 22, 2012
New Year's Resolution
I just wanted to give a quick update on my health, more for my own records than anything. I have continued to get stronger and feel better. Although I feel like the last couple months I have reached a plateau. I have only been able to gain about 10 of the 23 or so pounds that I lost. I also haven't been trying as hard, but it is my New Year's resolution to gain wt! Chris has been making me smoothies everyday the last week to have in addition to my breakfast I normally eat (which will be super fun to make with our new BlendTec we got for Christmas from Chris' Grandparents)! I am going to have to just start eating more...tonight I actually ate TWO pieces of pizza and TWO pieces of crazy bread, which is really good for me. Chris was so proud.
My rheumatoid arthritis has been bothering me a lot more than normal, so I am taking another medication for that. It won't start working for about a month so she also gave me a weeks worth of steroids to help. This morning my hands are very swollen and just throbbing, hence why I am awake and Chris is sound asleep next to me. (When I started writing this post, it was early in the morning). I have found an essential oil that does help, thanks to Chris' Aunt who told me which ones to try. The rheumatologist had me get some blood work done for a baseline because you have to have it checked regularly while taking the new medicine. My Vitamin D was low, which can cause muscle pain, so I will also be taking a very high dose of that for awhile. One of my liver enzymes was also slightly elevated, not sure why. I have to have that checked again this week.
My stomach is fine for the most part. Except for I just don't have a great appetite sometimes and I can't eat a lot at once. Other than that, I would say I am doing so much better. I go to work everyday and don't feel exhausted like I used to. I used to count down the minutes until I could go home and crawl in bed, and now I can't believe it when it is already 5:00. A couple times a week I even end up working 9 or 10 hours and I'm tired, but I'm not dying like I was before.
Anyway, that's where things are at right now. I am so thankful to my Heavenly Father for my health everyday. It is something I definitely don't take for granted! (On a side note, we found out a couple weeks ago that my $120,000 bill from the University of Utah was paid 100% by the insurance, when we were originally told they would pay 60%)! Thankful for blessings everyday. :)
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