Sunday, April 8, 2018

Surgery, Blockages, and Fluid, oh my! (Hospital Stays #23, #24, and #25).

Here I am writing another hospital post! This will probably get kind of long but I will try my best to keep it to the point.

I am going to back up a little to after I was released from the hospital in October, after I had my port removed and stopped TPN. I began trying to think about my options with my medications and nutrition support, and discussing this with my doctor. We decided we should not stop Remicade, because it helps me so much, and to try tube feeding again. I got in touch with my dietitian and had a long phone conversation with her. The reason why I had been doing TPN is because I could never tolerate Tube Feeding very well. When I tried it about 2 1/2 years ago, I actually LOST 7 pounds in that two weeks. BUT every time I have tried, the feeding tube has gone down into my small intestine. Well I don't know about you, but I'd rather have "food" going into my stomach-it is much more comfortable. The reason they do the small intestine is so your stomach still feels hungry and you can still eat real food. But it just made me too sick. So we decided to try an NG tube, ending in my stomach, for 3-4 weeks. We found a formula that already has the proteins and fats and everything broken down, so it is essentially already "digested." The plan was to get this all going right after Thanksgiving, and go until right before Christmas. Because of problems with getting all the right orders and everything, and a huge mix up with being told that they don't place NG tubes in Roosevelt, it took a longer to get things going than we had planned. I ended up having to drive to SL just to get the tube placed. 

Right away I tolerated it pretty well. I got up to the goal rate, pretty quickly. I was supposed to do it for 16 hours a day, but I hated being hooked to it that long, so sometimes I would even do a higher rate so that I could do less hours in the day. The goal was to see if I tolerated it, and I did, so we pulled the tube right before Christmas. I had wanted to have a permanent one placed before the end of the year because I had met my out of pocket for my insurance, but things just couldn't be planned that quickly. My doctor wasn't comfortable placing the tube because she hasn't done many of them, so she had me see a surgeon, but the surgeon was fairly new and after meeting with her, I didn't really feel comfortable with that option either. 

As a lot of you know, my sweet mother passed away the day after Christmas. A couple days later, the 28th of December, I went to SL and had a liver biopsy. My doctor was concerned that my liver labs were still elevated even though I had been off of TPN for a couple months. It wasn't too fun, but wasn't super horrible either. They sedated me enough that I don't remember a lot of it. It was sore for a couple days. The results came back showing that my liver was just still inflamed from the infections I had had, and not from TPN or Remicade. That was good news.

I really did not want to pay any medical bills this year, and since I was at a good weight, tube feeding wasn't super urgent. So we waited until I had met my out of pocket for the year. Because the Remicade infusions are so expensive, most people qualify for a co-pay card that pays what the insurance does not. It leaves us with very little to pay, even though we meet the out of pocket. Which is a huge blessing for us.

So once the out of pocket had been met, I had a CT scan and my GI doctor's partner (who has placed lots of feeding tubes) looked it over and said he would be able to place it. I met with him and he said my liver was pretty enlarged and in front of a large part of my stomach, and there literally was a space about the size of a quarter that he could place the tube, but he felt confident he could do it. He told me he would us General Anesthesia which made me very happy. I don't even know why they only use conscious sedation for things like this. Why would you want your patient waking up in the middle of cutting a hole in them? I remember observing a PEG being placed once during my internship. It was an older lady and she was awake through a lot of that. They are sticking tubes down your throat and cutting a hole in your stomach, and your awake???? She looked miserable and I just didn't understand why they don't sedate you more. So I was super happy when he said he has started using General Anesthesia.....Anyway, he also said he would admit me overnight, since the procedure was scheduled for late in the day, I live 3 hours away, and I always have trouble with nausea after
anesthesia. The downside was that he would have to originally place a PEG tube, which is an actual long tube that comes out of you, and a big pain. Similar to what I had once in the past and I absolutely hated it. But that would just have to be in place for 6 weeks, and then it could be traded for a button, called a Mic-Key. It literally is just a little button, pretty flush with the skin, and much easier to deal with. He did tell me that about 50% of feeding tubes get pulled in the first year because they are just a pain, but he also agreed it was worth a try. I felt pretty confident that this was what I needed to do. I was excited to be able to have some nutrition for maintenance. Something I could run if I lost a couple pounds, and then take a break from, etc. I was excited to avoid all those low points, where I'd get down to 80 pounds and feel miserable. I knew the first 6 weeks would be rough, but boy was I in for a surprise! 

Here you can see the difference between the PEG tube I will have for 6 weeks, and then the button I will be able to get later.

A week before the surgery, I got super sick and after a few days gave in and went to the ER. I have a part of my bowel just a couple inches inside my stoma, that gets narrow and blocked every now and then. My GI doctor dilated it with a scope about a year ago, and I was feeling that was happening again, and that it needed to be dilated again. After going in to the ER, I went into the outpatient IV clinic two more times and got IV fluids. That helped a lot but it was a rough week. I emailed the doctor doing the surgery and asked if he could dilate that part of my bowel at the same time he placed the tube, and he said that shouldn't be a problem.

ER Visit (pain meds decrease your oxygen levels, hence why I am wearing oxygen)

Hospital stay #23
The surgery was scheduled for Tuesday, March 20th in SLC at LDS Hospital. I woke up pretty nauseated, which was expected, and in tons of pain, which was not so expected. The doctor had told me that he sends most people home with numbing cream and that that is sufficient for the pain. It made sense, so I expected just to be a bit sore. That was definitely not the case. I was able to tolerate a little dinner, but after that things got even worse. Throughout the night they had to give me IV Tylenol, Toradol, and Dilaudid for pain (though it was a super low dose of Dilaudid). Drives me nuts that doctors just won't give me a dose that actually does something for the pain. But anyway, I was having shooting pains all around the tube. I felt like I could barely move, or breathe. In the morning I tried to eat breakfast and got down 2 bites and I was done. It was like I could feel the food going into my stomach and irritating the tube inside. Shooting pains again, throbbing, etc. 

Also when I woke up, the doctor told me that he decided not to dilate that part of my bowel. He said he didn't feel comfortable doing two things at once. If there were complications, he wouldn't know which procedure caused it. Which made sense. He said he would do it in the morning. I assumed he was going to take me and put me to sleep again-since the last time I had it done, it was painful and I had to be admitted, but I really didn't know what his plan was.

He came the next morning and was surprised at the pain I was having. He got some lidocaine cream and pretty much stuck his finger down in the incision and rubbed it all around, which put me in tears. I told him it wasn't helping at all. He said maybe my stomach was just sensitive to the tube. Your stomach is a muscle, so whenever it contracts, it could have been squeezing the tube in a way that was causing pain. He also wanted to stick his finger down my stoma and see if he could dilate my bowel that way. I told him not right now because I was still bawling from him sticking his finger in the incision. He said he'd come back later and do it.

I was still having quite a bit of pain, but feeling better and ready to go home that evening. He came back and I asked him about dilating the bowel now and he said he didn't think he should mess with it since I was still having pain. We were released. We went to Springville to pick up Luci from my niece, but my pain had gotten a lot worse by then so I told Chris I couldn't handle the drive home. We stayed the night at my Aunt and Uncle's house in Orem, and went home in the morning. 

Luci loves staying with my nieces. This is my niece Kelsi, and her husband PJ. Jenna and her husband Chandler also helped and Luci loves them all.

Hospital stay #24
By the day we went home (Thursday), the pain was much better and I was feeling like I was going to live. We went home but Friday night and especially Saturday, I was having a lot of pain again. Though this time it was different. My stomach was feeling very bloated, I couldn't eat, I hadn't had any output in my bag all day, etc. Around 6 pm I called the On-Call number for my GI doctor and was told I should go to the ER. We took Luci to my amazing Visiting Teacher with the plan for her to spend the night there. In the ER they put contrast down my tube (which was nice because I didn't have to drink it), but it just made me feel worse. I had a CT scan and it showed an obvious obstruction, right in the place that I had wanted the doctor to dilate it. The surgeon on call came in and stuck his finger down there. He felt like it got stuck, so then he stuck a small red tube down it and left it there until the next day. (FYI-a stoma does not have any feeling. It's a tiny bit uncomfortable, but for the most part you don't feel much). I was admitted about 11 pm.

Not long after I got to my room, I started throwing up. I think I ended up throwing up about 4 different times, each time was a lot. In the past when I have had obstruction, they always place an NG tube and put it on suction (to get everything out of your stomach to hopefully clear the obstruction). Since I had the feeding tube, they just hooked the suction up to that, which was really nice. No tube down my nose! It usually helps the nausea a lot so I was surprised I was still throwing up so much. I have only thrown up one time with an NG tube in place. They had also given me Phenergen and Zofran-two different nausea meds. I have also never thrown up after getting Phenergan before. I was so sick. However, I don't think they were getting very good suction. By morning they had figured out how to get it better and I stopped throwing up.

That morning, Sunday, the doctor came and said that my CT scan also showed that I had a lot fluid in my abdomen. He held up his hands to show the size, and it looked to be about as big as two baseballs. The plan was to go to the OR and drain in, and place a drain for a few days. At this point I had started getting fevers as well. My temp was about 102. Around lunch time they took me back, put me to sleep, and drained it. I woke up back in my room, very slowly and could already tell that I was feeling some relief. They had said the fluid was taking up a lot of space in my abdomen and probably making the obstruction worse, and causing pain and pressure. I was so happy that it immediately helped me. So now I had the feeding tube, the drain tube, and my ostomy. My stomach looked like a war zone, ha!

They started IV antibiotics and gave them to me the whole time I was there. I'm thankful I don't react to them, since I have had them a lot. My potassium, magnesium and sodium were low and they had to keep giving them to me the whole stay.

I was only allowed ice chips, and they were pretty stingy with them. I wanted more than anything to be able to drink some juice or water. Monday morning the doctor said we could stop the suction, and if that went well then we could probably start the tube feeding at a very slow rate and see how I tolerated it. But I asked him if I could just try eating instead. They sent me some clear liquids. I was SO excited, but got pretty sick afterwards. We hooked the tube back up to suction and I was back to no eating or drinking. 

Tuesday morning they did start the tube feeding, at 10 ml/hr. That seemed to go ok so the next day they bumped it up to 20 ml/hr. (FYI-the goal is 75 ml/hr). That made me somewhat sick but I was ok and we kept doing it. I was a little frustrated with the surgeon who was following me. He just kept saying that I should be fine now and whenever I felt "normal" I could go home. I certainly didn't feel anywhere close to normal and was still in a lot of pain. My stomach felt like it had a basketball in it and there was so much pressure and no space to even breathe. But Thursday I ended up telling him I was ready to go. I kind of wanted to wait one more day, but thought I would be ok to go. I was eating somewhat at this point and was happy with my progress.

Wednesday Chris had driven Luci to Orem and met his step-mom who was driving through back to Idaho. She took Luci with her. So when we came home, Luci wasn't there and it was so helpful that I could rest as much as I needed. I was taking my pain pills as much and as often as I could, and pretty much laying in bed and sleeping all day.There is no way I could have taken care of Luci with Chris working. She had lots of fun with all her cousins.

Hospital stay #25
By Saturday morning I decided I could travel and we went home to Idaho so we could spend Easter with Luci. We had a nice weekend. I still was taking a lot of medicine, and Sunday started having more pain that was getting worse again. We got home Monday afternoon with Luci. 

But my pain continued. Tuesday morning I called and got an appointment with my primary care doctor. I didn't really know what he could do, but I was hurting. Chris took me to the appointment and I was almost in tears by the time we got to see him. He called the surgeon who had followed me in the hospital, who suggested an x-ray to see if there was another obstruction. We went and had the x-ray and they said it looked like there may be one, but wanted to know for sure. So they sent us to the ER to get a CT scan. When we were told that, I started crying to Chris that I did not want another CT scan. I knew I wouldn't be able to handle the oral contrast. They didn't even mention me taking any contrast so I was happy about that. They came back and said it showed an ileus, and more fluid in my abdomen. And ileus is a little different from a blockage. Instead of a place in the intestine actually being kinked or having something stuck, the intestines have basically just stopped moving and working. When I was in the hospital with the blockage and fluid, no one really said where the fluid was coming from. They weren't sure now either. The doctor who had drained the fluid, was now out of town for the week so they decided to send me to SL. I waited for I think a couple hours for an ambulance to come. Chris was with Luci getting her ready to go, and packing for all of us. I was in quite a bit of pain, but luckily they gave me lots of drugs which knocked me out. 

Before Chris got on the road, he brought Luci by to say goodbye. As you can see, she has been picking out her own outfits these days. LOL. :)

The ambulance ride was not as bad as the one in October. They gave me meds right before we left. I was able to sleep for quite a bit of it. But for probably the last 45 minutes, I was awake and having lots of pain again. We got to the hospital around 11 pm I think. Chris had dropped Luci off with my niece again (thank you so much Kelsi, PJ, Jenna, and Chandler!) and then got to the hospital about 20 or 30 minutes after me. What was interesting, was by the time we got there, my ostomy bag was full. Nothing had come out all day, which was causing all the pain. It filled up a couple more times during the night. In the morning my pain was significantly better. I felt like the ileus had gotten a lot better at this point.

The GI doctor who had placed my PEG tube came and saw me in the morning (Wednesday). I told him everything that had been going on. He decided to take me to endoscopy and do a scope and dilate that part of my bowel if it needed it. He mentioned he was still glad he hadn't done it when he placed the PEG, because now he would be worried about a bowel perforation. That made sense too. 

A hospitalist also came that morning and told me that we needed to stop all pain meds because they can slow down your bowel and could be causing the ileus. If I had still been in excruciating pain I would have argued with him, but since things had already improved a lot, I agreed. He did say I could have some if pain got super bad, but to try to go without it if I could. I had last had some about 5 am. I waited till about 3 pm to ask for some, by then it was getting pretty bad again. The nurse came and said she still couldn't give me any. I kind of told her that the doctor had said I could have some if it was bad, but she didn't listen and wouldn't give me anything. She told me to wait for my procedure and maybe they could give me some then. I was also on IV antibiotics the whole time here. They felt by the time I went home that I didn't need any oral ones.

I had the procedure that afternoon around 4 pm, which meant I hadn't been allowed food or water the whole day. I was getting pretty annoyed at not being able to even drink. Your mouth gets so dry and it is really hard to go without anything. They would not even let me have ice. The procedure went well. I woke up fine. I was in some pain and having some nausea, so they did give me some medicine. The GI doctor said everything actually looked good. He said the bowel was only a tiny bit narrow so he didn't have to do much. They looked at the rest of my bowel and there was no inflammation (thank you Remicade). There were some ulcers at one point where there is an anastomosis (a point where my bowel has been sewn back together in the past) but he said that was likely more a result of the anastomosis, and not Crohn's. He removed a lingering staple and took some biopsies and that was pretty much it. I talked to him about the pain medicine, and asked him if I could at least have some when it got bad and he said he didn't have a problem with that.

That evening when the nurses did shift change, I told both the old nurse and new nurse what he had said about pain medicine. I made it pretty clear that I wasn't happy that I had been denied anything earlier when it had been 10 hrs since I had had anything. I understood why they didn't want me to have a ton, but by now the ileus was pretty much resolved and I didn't feel it was fair to not let me have anything. Like every 10 hours I should be able to get some relief, lol. The new nurse was nicer and let me have some medicine a couple times during the night, and the nurse the next day was nice too. Another thing was, there is apparently a shortage of IV nausea meds in the country. So if I could take a pill, I was always offered that first. It just didn't provide the instant relief that IV meds did, but I survived. Sometimes I did get the IV meds if it was worse. I was also able to eat clear liquids that night. The GI doctor had told me I could eat what I felt like, but the hospitalist seemed to be in charge and had other ideas (the clear liquids). The nurse did let me have some crackers though.

However the pain medicine was making my blood pressure go super low. I kept getting woken up a million times in the night to recheck my blood pressure. They kept asking if I was dizzy or lightheaded, and I kept saying I wasn't. I was a little bit but I really wasn't super symptomatic. They said it was from the pain medicine. I should have just asked for the doctor to order a pain pill instead, because that wouldn't affect it and it probably would have controlled my pain better. The IV dose they were giving me was minimal and not giving me tons of relief even when I did receive it. (Again with the ordering of tiny doses of Dilaudid. I'm really not a druggy, but I know what doses help and what ones don't).

Thursday the goal was to have a CT scan, and compare it to the one I had had in the ER on Tuesday in Roosevelt. The CT wasn't until after lunch time so again I couldn't eat or drink all morning. I did have to drink a bunch of contrast, but after that I was told I could eat a regular diet. I ate grilled cheese and some cheesecake, and a few bites of a few other things. Probably overdid it a little because I was pretty nauseated afterwards. The CT came back fine, and showed very little fluid in my abdomen, if any. They said the one in Roosevelt didn't even show tons. So maybe the doctors in Roosevelt overreacted a little, but I feel better that it was all able to be checked out and that we knew it wasn't a problem anymore.

The next day, Friday, I had a test called a Small Bowel Follow Through. It couldn't be done on the same day as the CT because they use different types of contrast. Again I couldn't eat or drink anything after midnight. I was sad I never got to have breakfast in the hospital. That is always the best meal in hospitals. The others are usually nothing to brag about. 

It was a little frustrating that everything seemed to be taking so long-like we could only do one thing a day. This test is one of my least favorite tests. The contrast if the worst tasting of all contrasts, and I almost lost it a couple of times. If I could insert emojis in a blog post, I would do the one with the little sick green face, because that is how I felt. They could move the table that you lay down on, completely vertical, so I had to stand on a little ledge against it, while trying not to fall, and while drinking the contrast and keeping myself from throwing up. They kept tilting the table back and forth, having me turn different directions, all while taking x-ray after x-ray and drinking more and more contrast. They were watching the contrast go through my system, and making sure it wasn't leaking out of my stomach or intestines anywhere. They were wanting to rule out any reason for the fluid to accumulate. If they had seen something, we would have been talking about surgery. I was done by about 10:30, and I really didn't expect to hear results until afternoon, and really didn't expect to be able to go home till the next day.

The doctor came though right before lunch and told me that it all looked good, and that if I felt well enough I could go home. She also said I could stay one more night if I felt like I needed to. Chris and I had already somewhat talked about it and concluded that really I just needed pain and nausea control, and we could do that at home. We thought even though we'd be getting home later in the evening, it would be nice to wake up in our own beds the next day. So I told her I was ready to go. She also changed my diet so I got some lunch, and then I took a quick shower and put on clean clothes before we left. The nurse I had that day was my favorite. She was surprised that I was going home, and asked me about a million times if I really felt ready to go. She was worried about my blood pressure. Truthfully it probably would have helped a little to stay and get more fluids in to help the blood pressure a little more, switch over the pain pills rather than IV meds, eat a little more before leaving, etc. But I just wanted to go home so bad. And I wouldn't have gone if I really didn't feel ok.

We went to Springville and picked up Luci. I had actually seen her that morning because my niece had an appointment in SL, so she had dropped Luci off at the hospital so Chris could watch her for awhile. He took her to McDonald's to play, and then brought her to the hospital right as I was finished with my test. I was able to go down to the lobby and see her for a few minutes. Then my niece came and got her again. But my niece and her husband kept saying when we were on our way to pick her up, that she kept looking out the window saying, "Mommy, daddy, mommy, daddy home!" I think she missed us and was tired of being away from us, just like we were tired of being away from her. It had been a long 2 1/2 weeks.

One kind of funny thing that also happened was I almost lost my phone in the laundry. Some of you will remember from my stay in SL at the U of U, my phone and iPod were stolen out of my room when I went for a procedure. Ever since then we have been very careful about what we leave out and what we take with us when we leave. If we were just going for a walk, both our phones went with us, etc. Well since they came and kind of took me for the Small Bowel Follow Through pretty suddenly, we didn't have time to talk about a plan. Kelsi was supposed to drop Luci off really soon and I would need a way for Chris to tell me when they were back so I could have someone take me down to the lobby (she couldn't come up to my room because they don't want to spread germs to/from little kids). But I left and didn't take my phone with me. When I got back to the room, I couldn't find my phone anywhere. I knew they changed my bedding while I was gone, so I wondered if they set it somewhere but I couldn't see it. I couldn't really get up and look around the room but I could glance around and I didn't see it anywhere. I wanted to be able to tell Chris that I was back so he could come back from McDonald's. I got the computer and tried texting him from that but it didn't work. I had a hard time with the WiFi but when I finally got it to work, I sent hime a FB message and told hime I was. I then said, "I assume you took my phone with you so it wouldn't get stolen." He responded that he did not take my phone and thought that I took it with me. I was like, "Hmm...Oh we'll probably find it later." Before I could go down to the lobby they had to take some blood, take some vitals, etc so I had to sit and wait for a few minutes. I got a little nervous that my phone was nowhere to be seen. I decided to get on the computer and go to the iCloud website and use "Find My iPhone" to make the phone ring. I started to hear the beeping and it sounded like it was coming from across the room. There was a closet right by the door so I thought maybe the aid who changed to sheets set it in there. Against my nurse's orders, I got up by myself and went and looked in the closet, but it wasn't there. Then I could tell the sound was coming from the hall. That made me a little nervous that someone had stolen it again. I walked out and there was a laundry basket right across the hall. It was definitely coming from the laundry basket. Another aid came out of another room and I told him it was my phone that was beeping from the laundry basket. I told him my sheets had been changed while I was gone and it must have gotten mixed up in the sheets. He said he would look for it for me. I went back to my room and sure enough, a couple minutes later he came back with my phone, and after wiping it off with a Clorox wipe, he handed it to me. He said it was rolled up in my bedding so probably hadn't touched anything else. He told me to give my aid a hard time for not checking the sheets very closely before stripping the bed. When my aid came back later I mentioned it to him, but I was laughing at this point. He felt so bad, but I told him not to worry about it. I was thankful though, that I had decided to look for it instead of waiting for Chris to get back. It would have been taken away. They hospital does not do their own laundry, they send it out to another facility so it would have been toast. Phew! 

So we came home Friday, and now it is Sunday. Since being home I have not had very much pain. In fact I have just been taking Tylenol for some discomfort. The hardest thing has been the nausea. I don't feel like eating anything, nothing sounds good, and when I do eat I feel worse. It feels similar to other times when I have come home from surgeries or hospitalizations. I think my tummy just needs to get used to eating again. I am going to start the tube feeding again tonight (at a low rate) and see how that goes. Hopefully I'll be able to increase it every day. I do need some nutrition. I could probably name everything that I have eaten over the last two weeks on my two hands, and it hasn't been anything super significant. Chris is a little worried that I'm not doing better, but I feel that I just need to give it time and ease into it. I am crossing my fingers that that is all it is, anyway. I see my primary care doctor tomorrow, and my GI doctor a week from tomorrow. 

Hopefully in one month-ish I can go back and have the big long tube replaced for the button. I'm hoping that these complications and set backs won't make the doctor want to wait longer. I will be so much more comfortable when I have the button. Summer is coming, and I want to be able to go enjoy being with my baby girl outside. We have some reunions, camping, swimming, etc planned and I want to be able to enjoy it all. I really feel that once this is all healed and I'm feeling better, the tube feeding will help me maintain my weight and stay healthy and feeling good. :) Chris and I would love to start trying to adopt another baby soon as well, but I need to be healthy enough to take care of two kids first. 

This week I plan to still take it pretty easy. I am having some symptoms of the low blood pressure. I need to take it slow when getting up and walking. I'm trying to drink lots of water to help that. I hope to go back and listen to Conference talks since we were traveling and I was sick and we missed a lot of it. I plan to cherish my time with Luci and hug her as often as I can. I really miss my mama and wish so bad I could call and talk to her, or that she could come here and stay with me and take care of me. Chris does a great job but he has to go back to work now. And there is nothing like your mom to take care of you when you are sick. It is still sort of unreal to me that she is not here anymore. But I know she is not in pain anymore, and she is still there for me when I need her. I'm grateful for my mothers-in-law. I love them like I love my mom, and so thankful for their love and relationships we have.

Luci has been so sweet. She sees my feeding tube, my bruises from IVs, and will say, "Mommy tummy hurt? Mommy owie?" And then she will give me a kiss and say, "All Better!" (She watches way too much Doc McStuffins).

I'm so thankful for all the help we have received. We are so blessed with wonderful family and friends who have helped with Luci, with meals, with coming over and washing my dishes, with friends who rushed to the ER to see me before I left for SL, only to get there just as the ambulance was leaving, with phone calls, texts, love, concern, and prayers. Thank you all so much. 

Saturday, October 21, 2017

Sepsis....again. Hospital stay #22

Well, here we are. Writing about another hospital stay. I think this blog has pretty much turned into a blog only about my health. I document other things we do through Instagram Chatbooks, which is way easier. But I figured I should write about these things before I forget the details. 

So last Tuesday I was not feeling great. We had been traveling all weekend and didn't get home till Monday night. My Remicade infusion was also due Thursday so I just thought I was tired from traveling and that the Remicade had worn off. I laid on the couch all night and didn't eat dinner. The next morning I woke up about 6 am with stabbing stomach pain and terrible body aches. Right at first I was concerned that this was the same way I felt two months ago when I was septic (minus the stabbing stomach pain), and Chris told me to let him know if we needed to go to the hospital. But I decided to wait and see how the day went. I didn't do much all day. I took ibuprofen and laid down when Luci napped, but couldn't fall asleep because of all the pain. My temp was up a little too. The body aches were deep down and way worse then when you have the flu. Finally about 2:30 I asked Chris if he could come home around 3:30 or 4. (I didn't want him to miss too much work). I texted my visiting teacher and asked her if she could pick Luci up when she woke up from her nap. She was picking her kids up at 3 so it worked out perfect. Luci loves it at their house. Chris got home about 3:30 and we went to the ER. 

One thing that I always complain to Chris about is that this ER never offers you a blanket when you get there. It's always cold and awkward laying on the ER stretchers, and I just think it's so weird that they never get you a blanket, or ask if you would like one. I usually don't remember to ask for one until they walk out, so I have to wait till they come back, call them back just to ask for a blanket, or have Chris go ask for one. This time when we got there, I did ask, and the nurse told me that since I had a fever, she could only give me a sheet. :( 

We were very relieved that the ER doctor on call, was the same doctor who finally admitted me on our third trip to the ER last time. He ran all the same tests he did before, but came back and said my blood work looked fine. He said I probably had a UTI. I was super disappointed (and confused) to hear this. I questioned him a lot. Could I have these terrible body aches with a UTI? The stabbing stomach pain was nothing like UTI's I had had in the past. It was very constant, and would get worse if I moved or was in certain positions. He said maybe I had more of a bladder infection, which could explain the pain higher up, and that potentially with any infection you could have body aches. I still didn't like that, because wouldn't body aches indicate the infection was in your bloodstream? He went on to say that if I wanted, we could do a CT scan to see if there were any abscesses or something that would cause an infection. I told him I would like that. It came back showing a cyst on an ovary (surprise, surprise). That did explain the stabbing pain. But not the body aches. They decided to give me a dose of an IV antibiotic, and then send me home with an oral one. They did draw blood cultures as well, which take several hours to get back, so the doctor said he would call me in the morning if they were positive. 

Well, the night was a bit rough. About 3 am my temperature was 104 and I was having bad chills. I felt awful. Thankfully some ibuprofen helped the fever and I was able to go back to sleep. Then, not to my surprise, the phone rang about 7:15 am. It was the doctor from the ER saying that my blood cultures were positive and that I needed to come back in to the ER, and that they would probably admit me. Since it was Thursday, I already had a babysitter lined up for that morning for Luci since I was supposed to get my infusion. I told her what happened and she offered to take Luci longer, which was a huge help. We got up and showered and got ready. I packed some clothes and things, and we got to the hospital about 8:45 am. I was feeling pretty darn awful. Chris stayed with me for awhile till they got me some pain and nausea meds, etc and then he went to work. 

It was a LONG morning in the ER. It was a different doctor by that time, and he felt the need to run ALL kinds of other tests just to rule other things out. He did an x-ray, EKG, tested for the flu, strep, RSV, and did an ultrasound to get a better look at the ovarian cyst. Just in case there was a small possibility that that was the source of the infection, and also to make sure that it really was an ovarian cyst. It was upsetting because he had those blood cultures staring him in the face, and I kept saying I felt exactly just like I did last time. I think my temperature got up to 104 again in the ER and I was having bad chills. The did say they were going to admit me, it just took FOREVER. 

I think it was 1 or 1:30 pm when I finally got to the ICU. Which I thought I was going to avoid this time but that was not the case. My blood pressure was low, heart rate was high, I had the fever, low oxygen, etc. Because they were concerned about the infection stemming from my port, they decided to start two IVs to use instead. I had forgotten how big of a pain it is to have IVs started. My lovely port had prevented that need for the last year and a half. It took a few tries to get two IVs in. And whenever they used them, it was painful, and got worse as time went on. 
 Just like last time, they had to give me TONS of fluids to keep my blood pressure up. It was super low. But, we were able to avoid the Pressures this time (medications to get your blood pressure up). When they admitted me, they were running two bags of fluid at once. It was crazy. If you will remember last time, I developed lots of swelling and was third spacing, where fluid goes to places in your body that it can't be used. This time along with fluids they gave me albumin. Albumin is a protein in your blood, and that helps to keep the fluid where it should be. I remember when I worked as a dietitian, that I would see patients who were third spacing receive what we called an, "albumin sandwich." Albumin, lasix, and then more albumin. This seemed to work because I did not develop the edema that I did last time. That night they also had to give me potassium and calcium during the night which burns like crazy going into your IV. Last time I was in the hospital, they gave me potassium but used my port and I couldn't feel a thing, which I was pleasantly surprised with because I knew how bad potassium can be going in. I didn't sleep much during all of that. They kept bringing me warm blankets to wrap around my arm, which would help for a whopping 3 minutes. But I survived.

One thing that was super upsetting was the nurse told me that the doctor said that with all the fluids and everything, I was going to need to pee a lot. It was going to be hard for me to have to keep getting up to use the bathroom. And then said that if I didn't go to the bathroom in the next two hours, I would need a catheter, which would make it way easier on me so I wouldn't have to keep getting up. FYI-ICU rooms don't have bathrooms. Which I don't really understand because not everyone in the ICU is on a ventilator. Thankfully I at least had an actual room, instead of just a curtain. The ICU had a bathroom out near the nurse's station that I would have to walk to, or use a bedside commode. (Glamorous, I know). The last hospital stay, I walked to the bathroom every time, until another patient got admitted to the ICU. Then the nurse I had brought in a commode so I wouldn't have to share a bathroom with another patient. This time I just opted for the commode because there were other patients there. Also in the ICU, there are a bazillion things hooked up to you-oxygen, oxygen monitor, blood pressure cuff, a bunch of monitors and wires stuck to your body, multiple IVs, SCDs (Stands for Sequential Compression Device-things they wrap around your legs that intermittently inflate with air, to keep you from getting blood clots), etc. So it is a pain when you have to get up with all that stuff. So of course I had to go to the bathroom not very much later, and the nurse asked me again if I would just like a catheter to make things easier. I thought maybe that wouldn't be so bad so I said yes. But as soon as she put it in I was bawling. Like huge crocodile tears, loud, bawling. She kept saying it was in the right place, there was nothing left in my bladder, but I could not stand the pain. She gave me pain medicine and it didn't help one bit. Granted, she only gave me a half dose. The pain medicine would cause my blood pressure to go even lower, so they couldn't give me too much. This was about 2:30 and I called Chris and told him to get down there. Ha. After he got there the PA came in and asked why I had a catheter. We told him to make it easier and he said, "I don't like catheters, we should get it out soon. I just said to put a catheter in if you couldn't go to the bathroom." Either the nurse misunderstood him, or she just didn't want to help me up every time I needed to go, I don't know. But she came in and we said we wanted it out. I realized during this time that I was probably having bladder spasms, and that was probably why I was in so much pain. Bladder spasms are seriously one of the most painful things. I told the nurse about how about a year ago I had an Exam Under Anesthesia of my bladder, and that it caused major bladder spasms and they didn't go away for days. I was really afraid that removing the catheter would not alleviate the pain, and that I would keep spasming, but luckily that was not the case. I felt much better almost immediately. Chris was supposed to pick Luci up at 3, but got my visiting teacher to go pick her up from the other babysitter and watch her for about an hour so he could stay with me till I felt a little better. Also for dinner that day they let me start eating. I was starving since I basically didn't eat much the day before, so I was really happy about that.

Chris and I have been taking the Financial Self Reliance class offered by the church every Thursday night, (which is amazing btw), and have had the same young woman in our ward come over and watch Luci every week. I asked if she could still come that night so that Chris could come be with me for awhile in the evening, but then my amazing niece Kelsi offered to come to Roosevelt and pick up Luci and watch her over the weekend. She said that she didn't have much going on, and when she did have work to do, she volunteered her sister (my other niece) to watch Luci. We talked about it and agreed that would be a huge, huge help. So Chris went home and packed a bag for her, I wrote up some notes and sent them to Kelsi about Luci's schedule and stuff to help her, and Chris went and met her and her husband in Duchesne so they didn't have to drive all the way. Then he was able to come back and spend some time with me. That was such a blessing. Throughout the weekend both my nieces sent me videos of Luci and she was having so much fun. They watched her favorite movies, took her to the park, and to the corn maze. She loves them and she had a blast. 

On Friday, they decided to do an Echocardiogram. Basically, an ultrasound of your heart. They wanted to make sure that the reason this infection had come back wasn't because it was living in my heart valves. They said if it indicated inflammation or anything, then they would probably send me to a bigger hospital in Provo or SL to have a Transesophageal Echocardiogram, or TEE test done. That test is not done in Roosevelt. That is when they put you to sleep and put a scope down your throat to look at your heart valves up close with a camera. So we hoped for good news. I didn't think it would be a big deal but boy was I wrong. When the technician came in to do the echo, she realized that I had the stickers all over my chest from the EKG they did in the ER, and stickers for the monitors they currently had hooked up. She just started ripping them off. Oh. My. Gosh. I started crying. It is not like ripping off a bandaid or piece of tape. Those things are STICKY, and leave welts behind even when you play nice and remove them carefully. Once I started crying she started to be a little more careful, but man, that was not fun. Then she goes, "Unfortunately, I have to put my own stickers on now." I was like "are you kidding me??" Then she couldn't even get her monitors to work. Ugh. Then for the ultrasound itself she was pushing so hard. At this point, every inch of my body hurt because of the infection. The nurse at one point rubbed my shoulder, and I wanted to scream. If Chris touched me, I told him it hurt. So for her to be pushing really hard made it really bad. I was so glad when it was over. Everything looked fine, so that was good news.

Right after that, I got another high fever and really bad chills, was crying and in tons of pain. During the midst of this, I had to go to the bathroom really bad, so I called the nurse to come help me. As I was standing up, I accidentally stepped on the wires to the monitors that were connected to me, which made me start to trip, and in the process my ostomy bag caught on something and popped off and output went everywhere. They had to change my gown, sheets, SCDs, mop the floor, everything. I felt so awful, I kept apologizing to the nurse. I was sitting there shivering to death as they changed the sheets. I was so happy to be able to crawl back in bed and get some meds. Eventually it got better but, man that was awful. 

By the third day, I was in my really-irritated-about-every-single-little-thing-mood and acting super grumpy to everyone, even Chris. It was Saturday so he was able to come and sit with me. Little things the nurses did upset me, even though they were great nurses. I've talked about this before in previous hospital blog posts, but it's like you are so miserable that little tiny things that would not normally bother you, drive you crazy. Every little thing people did. I don't know what was up but it was a rough day. I think it was that day that I asked Chris to give me a blessing. Our Home Teacher came and helped him. The main thing I remember is that he said I should use this time to grow closer to my Savior. I realized that I had not really been praying or seeking the Lord's strength through all this. That helped me change my attitude and handle things a little better.

Also at some point, the doctor told us that Remicade can cause your labs to look normal, even when they aren't. He said that is why everything looked fine when I was in the ER. He mentioned that he felt like Remicade was a big reason that I was having these problems and that I should talk to my doctor about finding a different drug. I will have to ask my GI doctor and see what she thinks. I LOVE my Remicade, and that class of drugs (called biologics). I know they have a lot of risks with them, but ever since I started taking them (first Cimzia, then Remicade, then Humira, and back to Remicade) I haven't have much inflammation or flare ups at all. So we will see I guess. The doctor also told me that if I had waited just a few more hours, the outcome could have been a lot worse. And I'm like...I went to the ER and was sent home...There's not a lot you can do when they won't admit you. I mean they should have been able to put it together that I'm on Remicade and probably still had an infection even though labs looked normal. He told us next time (if there is a next time) to call him or go find him on the floor and he would make sure I got admitted right away.

All this time they were saying that since the infection happened again, they were thinking it was from my port. On Saturday, blood cultures came back positive again (the ones drawn from my port), so they decided to go ahead and remove it. They wanted me to be a little more stable when they did it, so they waited till my blood pressure and heart rate and oxygen levels were better, etc. They ended up doing it Sunday morning. The surgeon came and talked to me and said he would just do it right there in the ICU. Chris came and was able to stay with me the whole time. I was praying that I would be able to sleep through it, and that it would be better than the experience I had when it was put in. Chris said it was pretty crazy watching the whole thing. They gave me some conscious sedation so I don't remember much. They said it would take about 15 minutes, but it ended up taking closer to half an hour because the doctor had a really hard time getting the port to come out. It had been in there for a year and half and had tissue and stuff really holding it in place. I did start to wake up a couple times, and I started to move around and groan. Chris was holding my hand and telling me it was ok, and the doctor told the nurse to grab some more Versed and I was asleep again. Another time I started to wake up they gave me more pain medicine and I was fine. WAY better experience than getting it put in. You can read about that HERE. (If you don't want to read the whole post, scroll down about halfway to where it says, "First of all, let me just preface this...") When I was getting it put in, all they would have had to do was just give me a little more medicine and the whole fiasco could have been avoided. So I was VERY thankful this time. Afterwards I was saying some pretty funny stuff that didn't make sense. I haven't done that in awhile. :) The rest of the day was pretty chill. They numbed me where they made the incision, so it was later that night before I felt any pain from it, and it has not been nearly as bad as when I got it put in. :) I did get a another fever later that day of 101 or 102, and they said that maybe removing the port kind of made the infection fester again. Weird.

Day after having the port removed

Almost one week after having the port removed

Also on Sunday, my niece Jenna, who had been helping with Luci, told us that she could come to Roosevelt and stay at our house until Tuesday and watch Luci. She has (an adorable) 2 month old baby that she brought with her and Luci was again in heaven. She LOVES babies. We were again, so so grateful for the help. It was really nice because now she could be at home, sleep in her own bed, etc. And Chris was able to bring her in Sunday night and we were able to cuddle for a few minutes for the first time in a few days.

Monday morning they decided to move me out of the ICU. My blood pressure was finally consistently up in the 90's/50's, which was a big improvement. I was excited because that meant that I could finally take a shower. I still wasn't feeling great though, and I always forget how nice the ICU is until I leave it. I was in a room WAY down at the end of the hall, as far away from the nurse's station as you could get, so it definitely took longer to get things whenever I called. But it was also nice and quiet, so that was good. It was so nice not to have all the things hooked up to me anymore. I started slowly pulling off all the stickers I had on me from all the monitors, and it was so nice not to have that blood pressure cuff on 24/7. That day they told us that they cultured my port and it came back positive for a different bacteria than what they had already identified in my blood. So that was concerning and I think they might have added in another antibiotic at that time. Later they said though that it was probably just a skin contaminant, and nothing to worry about. The first bacteria was not found on the port, so that was a little disappointing since we pulled it out. But they said that that type of bacteria doesn't typically stick to plastic, and that didn't mean it didn't come from my port. They also said that my blood cultures from Thursday were positive, then Friday was negative, then Saturday was positive again. It was very confusing. 

A housekeeper came in one day with three fleece blankets and told me I could choose one. Apparently she makes them for a lot of patients. It was so sweet. 

Also that day, they did a chest x-ray, and the doctor came in and told me that it looked like one of my lungs had either partially collapsed, or had a small pneumonia developing. He said it was most likely from laying in bed for so long and not breathing very deeply (which was painful for me, especially the first couple of days). We had this problem last time, but neither Chris or I thought to ask for an Incentive Spirometer (the thing you breath into to help keep your lungs strong) until now. Next time we will remember to do that from the beginning. But once they found that on the x-ray, they brought me one and I started using it. When I texted Chris that, he was worried and came right over to see me. He told me he was taking the next day off work so he could help me walk a lot, which they said would also help. He also told me that at this time, he had went and found the doctor and talked to him about everything. He told the doctor he was really worried about his wife, and was wondering if we just needed to go to SL. The doctor told him that he was doing exactly what he would do if he were treating his own daughter, so that made Chris feel a little better. I had already gone on a handful of walks while in the ICU. Usually in the evening when Chris was with me, we would either take a wheelchair, or I would walk a little bit in the halls. Apparently that wasn't enough though. I was happy that he would be with me the next day. That night he helped me take a shower, which also felt amazing. That day they also contacted a heart doctor in Provo who would call me to make an appointment as an outpatient to have the TEE done. The doctor still wanted to rule out any infection lingering in my heart. 

Incentive Spirometer 

I didn't have Chris or Jenna bring in Luci that day, as much as I wanted to see her, because last time she came and saw me almost every day and by the end it was SO hard. She would scream and throw a huge fit when it was time to leave, and then I would be left alone crying too. I decided it was just better to FaceTime.

The next day was Tuesday, and the doctors came in and said that I had been fever free for 48 hours, blood cultures had been negative since Saturday, and that if I made it through the day without a temperature above 102 for more than an hour, then I could go home the next morning. Yay! We were so excited. I will say that for the last couple of days, I still was having low grade temps. 99.2, 99.5, etc, but the doctor did not seem concerned about that. Chris stayed with me and we got up to walk a LOT. I was grateful to have him there. I had been so bored and so lonely there by myself most of the time. Thank you to those of you who did come and see me, it meant a lot. He also brought Luci in in the morning for a few minutes and that was so good to see her, and she only cried for a second when it was time to go, and then just waved and said bye. :)  Well that afternoon, my temp got up to 100.1, and then I was given Ibuprofen and it went back down. I thought it was odd, and I wondered if it would have kept going up if I hadn't taken the ibuprofen. I took it though because I had developed a really bad headache. Still didn't worry me though, because it was not above 102 like the doctor said. 

My lunch came and Luci took it upon herself to steal my roll and eat it!

That night, a little after 8 pm, the PA who had been working with the doctor the last couple of days, came in and told me that she was just looking in my chart and saw that my temp had gone up that afternoon. I said yes, and she said that they would need to send me to SL that night. She said they were giving me the right antibiotics for the infection so there was no reason why I should still be having fevers.  She also didn't want me to wait to have the TEE done, so they wanted to send me now. This was something they had mentioned a couple of times. They had even asked us if they did end up sending me somewhere, where would we want to go (Provo, SL, etc). At the time we had told them Provo because we have quite a bit of family there, but then we talked about it more and decided SL would be better. It is closer to Idaho and family there could come get Luci and help with her if needed. I was glad we had discussed that because she asked me if I still wanted to go to Provo, and I was able to tell her that we had changed our mind and wanted to go to SL. Chris was not there, he had left about 4:30 to go home and take care of Luci so that Jenna could go back home. I called and told him they would be taking me in an ambulance to IMC in SL. My brother and his wife live in Ogden and they had already volunteered to take Luci for awhile if we needed. So Chris talked to them and they of course said yes, so he packed a bag for him and Luci, and a few other things I needed, and then was able to drive to their house and drop her off, and then meet me at the hospital in SL. In the meantime, they were giving me my IV antibiotic, and the vein blew so they had to start a different IV. Again I wished so bad I had my port back. I lost track of how many dang times they had to start new IVs and draw blood. It was a lot.

The frustrating thing was, it was not even 8:30 when they told me I would be leaving. Chris got to the hospital about 10 pm to get my stuff and he left Luci with me for a few minutes while he dropped something off in his boss' office and went and talked to the PA. He told her he was going to start driving and asked if it for sure was happening tonight, and she said yes. When he came back to get Luci, I burst into tears. I missed her so much and didn't want her to leave. I begged him to stay for a couple more minutes, but eventually he did have to go. We said a very tearful goodbye. :( So he left about 10:30 and I was still waiting for the ambulance. Of course I could not sleep, so I watched a lot of Nick at Night, ha. Around midnight the nurse asked me if I just wanted to wait till morning, but I said no because my husband had already left, and the PA told him this was happening tonight. I knew there was no way I'd be able to sleep if I had to wait till morning. I was too anxious. Finally about 12:30 I did finally decide to try and sleep for a little bit. They had told me that at 10:00, the ambulance said they would still be an hour and a half, and at this point, it had been 2 1/2 hours. Finally about 1 am, they came into my room with a stretcher and put me in the ambulance. The ambulance ride was not fun. They gave me my sleeping pill not too long before we left, but I didn't sleep much. I was strapped into a stretcher, and couldn't move or bend my legs. My neck was killing me, I didn't feel well, etc. One of my nurses from Roosevelt rode in the ambulance with me, but all she could give me was nausea medicine, not pain medicine. My blood pressure started to go down again so she also gave me some fluids.

This was about 10:30 at night. Chris had gotten her out of bed to come and get my stuff, and then drive to Ogden and drop her off. He put a movie on for her and kept her awake the whole time so that she would go to sleep when he got there! Mean dad, haha! 

It was right after this that we had to say a tearful goodbye.

Chris got to my brother's a little over an hour before I got to the hospital, so he tried to sleep for an hour, and then came and met me. He got there just 10 minutes after I did. It was 4 am. I was so happy to get out of the ambulance stretcher and into that bed. It was SO comfy. Then started the whole tell-a-million-people-my-history-a million-different-times thing. Since I have never been a patient at IMC, they didn't really have a lot of my history or even why exactly I was there. A resident on call came and asked me a billion questions about the current hospital stay, and I was thinking, "didn't they tell you anything?" I think the nurse mentioned that the attending doctor who worked during the day had been told everything so that made me feel better. The resident who had seen me also ordered me IV pain medicine. I had pretty much stopped taking IV pain meds and had just been taking pills for a couple of days. I was feeling pretty decent that day, but that afternoon with my headache I had developed, and fever, and ambulance ride and all that, I was not feeling great again, so I was grateful for the IV med. Pills seem to last longer, but IV meds give immediate relief.  I think it was 6 am before people stopped bothering us and we were both able to try to go to sleep. Neither of us slept much. Both of us kept having weird dreams and waking up suddenly. I think there was just too much going on and I know I was nervous being in a new place. I was so afraid that we were starting over and I was going to be there for another week. Ugh. But eventually, I was able to actually sleep, and my nurse let me sleep till about 9 am before waking me up to do IVs and meds. But pretty much the rest of the day, both of us were sleeping when we could. It had been such a long night, we were exhausted. Throughout the day more and more doctors came, Infectious Disease doctors, residents, hospitalists, etc. They all were saying that the type of bacteria I had, did not usually live in the heart valves, so they weren't sure I would actually need the TEE test done. Around 11 am, I was told that I could eat because they weren't planning on doing that test anymore. 
It was all confusing because they went back and forth a lot. "Yes we think the infection could have come from your port, no that type of bacteria doesn't typically come from a port, it probably came from somewhere in your intestines and leaked out into the bloodstream," etc. We heard all sorts of things. They still didn't have a lot of records from Roosevelt, so Chris was able to call and have some things sent that they needed, mainly the CT I had done and results of all blood cultures that had been done. An infectious disease doctor came to talk to us. He said that at this time, the really didn't think I needed the TEE done, especially because the first Echo I had done, looked great. 
Luci had lots of fun at my brother's house with her cousins.

They did say that they wanted to do another CT scan. Back in Roosevelt, they used my port to give the IV contrast, but since I didn't have that anymore, they said they would have to start a new IV. The needle has to be a certain size in order for the contrast to go in, and since it is so hard to start IVs on me, they had used pretty tiny needles so far. Two different nurses tried 3 times all together and couldn't get one started. So they called a nurse who helped put PICC lines in, and she came with an ultrasound machine and was able to use that to get a line in on her first try. And that was the best IV I had had the entire time. Didn't hurt at all when they used it. It was amazing. 
New IV

We waited pretty much all day to do the CT. The nurse came and said that an order had been put in to give a urine sample to make sure I wasn't pregnant before they could do the CT, and she had had the order for half and hour before she came and told me. It took an hour for results to come back.  Then we had to wait for them to get the IV started, which took almost an hour, and then I had to drink a bunch of contrast over an hour and a half. I felt bad because my sister-in-law Stephanie and her two kids, Chris' dad and stepmom, and a lady in my ward were all coming to see me that evening. I mentioned to the nurse that the sooner we could do it the better, since I had visitors coming. Her response: "Well they can just wait for you, it shouldn't take too long." :/ Stephanie came and we were able to visit with her for awhile before they took me to do that CT. It took a little longer than I hoped, mostly just because I was waiting for someone to take me back to my room for quite awhile. When I got back Chris' dad and stepmom were there and Stephanie left, and then my friend from the ward came. It was good to have visitors, even though I wasn't feeling awesome and probably not good company. 

The next morning the hospitalist came and said everything looked good and that I could probably go home that day or the next day! Later she came with her team and said that the CT didn't show anything except the ovarian cyst. She also said that they were able to look at all the blood culture results they had been sent, and that the only one that had come back positive was the one drawn from my port, so they think that the infection did come from the port. They said that I was on the correct antibiotics, my temperature had not been above 99.2 since I had gotten there, and I was feeling better so they said I could go home! We were so happy. But then the waiting began. That was not too long after breakfast, and I was there long enough to eat dinner. Actually everything there seemed to take longer. It look over an hour once to get some zofran (nausea med). A charge nurse came one time and asked me how my care had been and if my nurses were checking on me every hour. I was like, Ha. Which would have been nice, but I did have Chris there and I could call if I needed something, although it would take a long time for someone to answer. I know nurses are busy, and that was a huge hospital, so I tried to be understanding.

A dietitian came and talked to me at some point that morning as well. The doctors had also mentioned that they were concerned about my nutrition. I told her my whole history, why I had been on TPN, and that we had been in the process of tapering off of it. (My dietitian who manages the TPN had been very reluctant to let me get off of it this time, since we know that I inevitably always need it again. But my liver labs had been going up, my GI doctor wanted my body to have a break, and I was just sick of it. My skin where the port dressing was, was getting really bad, etc. So over the last 3 weeks, we had decreased the volume by 50% and the next week we were gong to go from 4 days a week, down to 3). Because of all that, I was fine with not starting anything again right away. Usually I don't do well just stopping TPN cold turkey. I have to taper off. But I think we had tapered enough that I was doing fine, and I had already been off of it for a week anyway. Everyone kept saying they didn't want me to lose weight. I just nodded my head because I know I will lose weight. It's just a matter of when. I think that is better than constantly being on TPN and needing a liver transplant in 5 or 10 years. 
 When the doctors came to talk about discharge, they said that I could get another port put in, in as soon as a week, or when I finished antibiotics. But I told them we were going off TPN for awhile anyway, and that I would just address that with my doctor when the time came. They were fine with that. They said that getting another port did not mean that I would get another infection, that this was just a rare thing that happened and I should be fine to get another one. That was somewhat of a relief, though I'm not sure my GI doctor will feel the same way.

I wish I had asked the doctors more what exactly could have caused it. They all just kept saying it was so strange that this type of bacteria would be in a port. Chris and I are OVERLY careful with it. So it is hard to imagine that it is something we did. Of course there have probably days when we weren't as careful, but still, it's hard to think that it could possibly be my fault. Of course, there are other people who deal with my port, nurses who access it and draw blood every week, and my doctor said that the bacteria could have even come from the TPN itself. I told Chris that I may discuss tube feeding again with my doctor, even though I've tried it a few times and it was awful. If circumstances were different, it may work, and may be worth trying again and not risking getting another infection. That would be a very big decision though that would not be made lightly.

As I said, we waited all day. The hospitalists wanted to touch base with the Infectious Disease doctors and I think that was mostly the holdup-they hadn't heard back yet. When they finally did, the nurse finally came and said that my prescription had been sent the pharmacy to be filled, and then they would come bring us discharge papers and take out my IVs. We were kind of upset that they sent the prescription to the pharmacy without asking us. Actually, they had asked us, right when we got there. They asked that if I needed any prescriptions when I was discharged, would I rather take them to Roosevelt to my pharmacy, or did I want them filled there. The nurse said their pharmacy was pretty slow so we said we would just take them. So I was thinking why in the heck did you ask me that, if you were going to ignore what I said? It took FOREVER! 

Around 6 pm, they finally said the prescription was ready for us to pick up, so Chris went to get the car and pulled up to the front, and a CNA took me down to get the prescription. I had to use a phone to call them, and they told me that it would still be 15-20 minutes before it was done. We ended up waiting for over 30 minutes and I finally called again and that time they had it ready. So by the time we were done and pulling out of the parking lot, it was 7:00. My brother Chad was going to meet us halfway between the hospital and Ogden, but he was only 5 minutes away by the time we were done, so we just met him at the hospital and picked up Luci. She was so happy to see me, and I was so happy to see her. I sat in the back seat with her until she fell asleep. She kept reaching over and grabbing my arm to make sure I was still there, it was so cute. We finally made it home really late and we were all happy to sleep in our own beds! After 8 days in the hospital, we were finally home.
All together again!

Just cuddling with Dad.

Whew! That was a lot. Sorry I'm so long winded. I always end up having more to say than what I think I will. But as I have said before, this is a great release for me. Sometimes I just can't stop going over things that happened in my head until I write them down and get it out. Especially experiences that were traumatic or emotional. Once I write it down, it's like I don't have to keep thinking about it, but I do have the option to go back and read it if I ever do want to.

We are SO SO SO grateful to everyone who helped us this week. To everyone who watched Luci, to those who visited, those who have and are bringing meals, said prayers, etc. We so appreciate it. So. Much. 
Get well card from my niece Halli

In all of this, sometimes it is easy for me to get down. I complain to Chris, I cry because I want to go home, or I am scared, or I am in pain, etc. But I ALWAYS know that it will be ok and that my Heavenly Father loves me and is aware of me. Even if I'm having a really hard time. I remember way back when I was first diagnosed with Ulcerative Colitis, over 11 years ago. I had just finished my first year of college, and was feeling pretty overwhelmed about finding out that I would have to deal with this for the rest of my life. I remember praying a lot and studying the scriptures. I decided to study about the Atonement. Up until that point in my life, I don't think I had really realized that not only did Jesus Christ suffer for our sins, but he also felt every single physical and emotional pain that we feel. He knew and knows exactly what I was/am going through. That was a huge realization for me. I have the most supportive family, and they are amazing, but only my Savior really knows how I feel. That has brought me true comfort over and over and over again. 

I am thankful for the gospel of Jesus Christ to help me through hard times. Even when I get home, it all still seems so overwhelming and daunting. Trying to eat well, have energy to take care of Luci, keep up with doctor appointments, continue to run my business, etc. So I am so grateful for the Lord and His strength. It helps me to not give up, and continue to have faith and hope.