It came on really suddenly. I went to bed last Thursday night (about midnight) feeling fine, and then woke up an hour and half later (at 1:30 am) in tons of pain. I woke up feeling restless and an ache in my legs and I had a headache. I got up to go downstairs and find some Tylenol and by the time I made it back to my bed, I was having some serious body aches. And my headache had quickly progressed to one of the worst headaches I ever remembered having. Just like that. Then I starting shivering like crazy and realized that I had a fever. I took my temperature and I think it was 99.8 or somewhere around there. So not high at all, but was enough to give me really bad chills. The pain was getting worse and worse and I started to cry. I felt like a big wimp because I figured I probably just had the flu. But I woke Chris up anyway. He said a prayer and rubbed my back for a few minutes and eventually I was able to fall back asleep. I slept very restlessly though and tossed and turned all night. I woke up about 8:30 am and realized Chris was still home. He told me he knew I was really sick and decided to stay home to take care of Luci for me. I was very grateful for that.
The last couple of days I had very vaguely felt like I had a UTI, which is super common for me. Because of my bladder issues, lots of times I feel like that, even though there is no infection. But about 9:30 I decided to go to the doctor to get checked, just in case. I figured there wasn't anything they could do about my flu/body aches, but if I had a UTI, then at least I could get that treated. At this point I felt awful. Really bad body aches again, and the worst headache I had ever had. I was starting to wonder if I just had a migraine and that maybe that was making me sick. I have never had a migraine before so I really had no clue.
My doctor was out of town, so Chris drove me to the Urgent Care and took Luci back home. I was going to call him when I was done. I got right in (luckily they were not busy), and told the Nurse Practitioner about my horrible body aches and UTI symptoms. My urine was clear but I was having terrible back pain as part of all this, my blood pressure was super low (even for me), my temp was up, etc. This worried the NP and she thought maybe I could have a kidney infection, so she told me I should go to the ER. One of the nurses actually brought me there in a wheelchair. I told Chris what was going on and told him to stay home with Luci and that I would be fine. I realized after I got to the ER that I forgot to tell her that I was on TPN at home and that I had Crohn's. So I made sure to tell them that in the ER.
They did a CT scan and drew blood. Everything was negative (no kidney infection, UTI, kidney stone, etc). They did find a cyst on my left ovary, but that is really common for me and not a reason for all the pain. Especially since it wasn't really my stomach that was hurting. However, my white blood cell count was double what was normal (26,000). They were pretty concerned about this but didn't know what it was coming from. They gave me pain and nausea meds, and an antibiotic and sent me home. Chris came and picked me up and I kind of just laid around and slept the rest of the day.
The next day (Saturday) I slept in and was feeling a bit better. I took a shower about noon, and when I was done, the ER called me and said that they had gotten some blood cultures back from the day before, and they were positive for infection, so they wanted me to go back and be re-evaluated. I was feeling quite a bit better at this point, so I was surprised. I told Chris I would like him to go with me this time. It was Luci's nap time, so we put her down, and then found a Young Woman in the ward to come over and stay at home with her.
When we got there I was doing ok. They gave me some fluids, and drew more blood. Results came back that my white blood cells had completely normalized (5,200). The doctor said that the antibiotic I was on should cover whatever infection there was and that I could go home. However, while there, I started to not feel well again. The body aches and chills hit me like a ton of bricks again. I was shivering uncontrollably. Chris kept telling me to calm down but I literally could not stop shivering. My temp was 101.6 so they didn't want to give me a warm blanket. The nurse offered to give me some motrin to help the fever and chills, and I accepted, and then went home right after taking it. I regret not insisting on staying. When we got home I was STILL shivering, and went straight to bed. Over the next half hour, my temp got as high as 103.4, which really worried me. I was about to call the ER, when it started to go down. I guess the motrin decided to kick in. Eventually I felt better.
I didn't go to church the next day, just stayed home and slept. The rest of the day I kind of laid around and didn't do much, and was feeling quite a bit better. Not normal, but the body aches weren't bad. Until about 10 or 10:30, then it hit me again. I kind of started to feel yucky again, but was working on something on the computer for Usborne that I really wanted to finish. However, it hurt just to lift my arms so I just did the bare minimum of what I needed to and headed upstairs to go to bed. I laid down but the chills and shivering set in again, and the aches were so bad. My back, neck, head, arms, legs, etc...everything hurt. I was in so much pain, I begged Chris to take me back to the hospital. I knew there had got to be something wrong, and in the very least I could get some relief from this pain that I felt like I couldn't handle anymore.
We talked about who to call to watch Luci (at 11:00 at night) and decided to ask my visiting teacher. She said it would be totally fine to bring Luci over so Chris got the pack 'n play ready and drove Luci down the street to their house. Luckily she wanted to go to my visiting teacher's husband and Chris was able to leave quickly. They were able to get her right back to sleep. Thank you Debra and Ryan!!
We were not in the ER very long when the on call doctor came and said they would probably admit me to the hospital. I was thankful they were finally going to figure this out. They were alarmed by the positive blood cultures from the day before, my fever, low blood pressure, fast heart rate, low oxygen, etc. All those things are signs of sepsis. They did some tests in the ER, but then transferred me to the ICU. Which surprised both Chris and I. Apparently I was super super sick. They started talking about sepsis, and my horrible vital signs, infection, etc.
It was an ok night, luckily I was pretty drugged up and that helped me to sleep here and there. Chris went home about 3 am to get some sleep, and came back the next morning. Chris stayed with me all day on Monday while Luci was still at my visiting teacher's house. He brought them a diaper bag and clothes and things for Luci. It was so nice of them to let her stay all day. I don't remember tons about that day. I remember the doctors coming and saying I had sepsis, and talking about how sick I was. They still didn't know what the bacteria was or where it came from. They were giving me IV antibiotics, medications to get my blood pressure up (it was as low as 80/40!), IV potassium and magnesium, TONS of fluids to help the blood pressure and heart rate, pain and nausea meds, oxygen, etc. I was able to get up and go to the bathroom. Most of the time I was the only patient in the ICU, except another person came sometime Monday night and left Tuesday mid morning. It was really nice to have someone right there if I needed them. I was super uncomfortable and in lots of pain and having lots of nausea. I actually threw up on Monday and was wishing the rest of the day that I could do it again because it helped me feel a little bit better. At this time I was becoming very bloated and swollen and my stomach was starting to hurt. I was NPO, meaning I couldn't eat or drink, but I could have ice chips. I got the hiccups about 10 times on Monday so they let me sip water when that happened. Even though my mouth was so dry, I didn't love drinking water because it made me feel more bloated and nauseated. That day our friend Trevor who used to work with Chris and is a Respiratory Therapist at the hospital now, came to see me and offered to help Chris give me a blessing. That was really nice. I honestly don't remember much of what was said and almost forgot that happened (because I was a little out of it) but it was really nice and I know helped me feel better and helped me feel at peace. That evening Chris went and picked up Luci and they let him bring her in to see me for a couple of minutes. She didn't know quite what to think. I had tons of monitors on me, my hair was very gross and matted from all the sweating from the fevers, etc. It was nice to see her for a minute though.
The next day (Tuesday) the doctors came again and said my blood cultures were still coming back positive. I think it was Tuesday that they identified what the bacteria was-clebsiella. They said this is one that is common in the gut, and they said I had a lot of inflammation in my gut, so their theory was that this started in my intestines, and then moved to my blood stream. The antibiotics I was already on were the correct ones to treat the bacteria. They said because I'm on Remicade and have a compromised immune system, then I am more susceptible to these things. Chris went to work on Tuesday after the doctors left, and we had a young woman in our ward come watch Luci till about 3:00. Then another lady in my ward (our neighbor and the Relief Society President) went and picked her up and watched her for a couple hours. (Thank you Jordyn and Maria)! Linda, Chris' stepmom, got to Roosevelt about 5:00 and then was there the rest of the week to stay home with Luci, which was SO helpful. Also on Tuesday I was feeling a little bit better, and asked the doctor if I needed to stay in the ICU still. He said I could go to a regular room if I wanted. The biggest reason I wanted to was so I could take a shower. I felt disgusting. (ICU rooms don't have bathrooms). I had tons of monitors stuck to me, my hair was disgusting, etc. The ICU nurse took me to my new room and helped me unhook everything, took the monitors off, and it felt so good to shower! Chris was able to stop by and bring me some clean garments and such. The ICU nurse continued to be my nurse the rest of the day since they didn't have any other patients in the ICU. She also helped another nurse change my port needle, which typically gets changed on Mondays, so it was past time. I still had to be on IV's, and still had to wear a gown, but I felt a million times better having a clean dressing for my port, no blood pressure cuff on and going off every 15 minutes, no lead monitors stuck to my chest, etc. Then Chris and Linda brought Luci by again for a few minutes. She gave me a big hug when she saw me.
On Tuesday, I also started getting a weird cough. They took a chest x-ray and said that because of all the fluid they had to give me to get my blood pressure up, I had developed Pleural Effusion, which is fluid around the lungs. Some of the fluid had also squeezed into my lungs. I was still on oxygen at night, and was having a hard time breathing, especially when I needed to take a deep breath. My chest really hurt. It was the worst when I would lay down to take a nap. I would wake up feeling like I was drowning, and needing to cough and take deep breaths (since I probably had not taken deep breaths while sleeping). I would sit up in a panic and try to breath, and it would hurt, and I would cough, etc. Every time I rolled over, got out of bed, etc, it was a big ordeal. They gave me an incentive spirometer to breath into to help my lungs. It was not fun, that was for sure. As the days went on my cough got worse, and they did several chest x-rays to make sure I wasn't developing pneumonia or anything serious. Also because of the fluid, I was super swollen everywhere. My stomach, legs, feet, and ankles were the worst. My clothes were tight and making marks on my skin because they were so tight. On either Tuesday or Wednesday night, the on call PA came to see me. He said I was third spacing, which is basically when fluid goes to places where your body can't use it. He ordered some Lasix, a medication that makes you go to the bathroom a lot, which helps you get rid of the extra fluid. I was up a lot in the night but I felt better in the morning. They also stopped all IV fluids so the next day I got to put on my own t-shirt and pajamas, since I wasn't hooked up the IV 24/7 anymore.
Tuesday I got to have broth and juice for breakfast. This was about all I got down but it tasted really good.
Feeling a little better in the ICU.
By Wednesday I was getting really bored, lonely, and homesick. I missed Luci like crazy. Chris was working and could only come see me for a few minutes in the morning when the doctor came, and then he would come in the evening with Luci for a few minutes, then take her home and put her to bed and then come back and stay with me for an hour or two while Linda stayed home with Luci. We'd usually play cards and/or go on a walk. Wednesday was the first day that the blood cultures came back negative. That was a really good sign. I was still coughing, still in pain, still having nausea, etc, but it was definitely better than a couple days before. At this point they were saying we would shoot for a Friday discharge. Throughout the stay everyone (doctors and nurses mostly) kept coming and saying how sick I was, how sick I had been, how lucky I was, etc. Apparently it was pretty serious.
I think it was Wednesday night, after being on a full liquid diet, I really wanted real food. So the nurse called the kitchen and got me a roll and mashed potatoes. Again I couldn't eat a lot, but it was so good!
Thursday Linda was going to bring Luci in for an extra visit in the morning, but my cough was bad and they were starting to get concerned that I was coming down with the flu, pertussis, strep, etc. They tested for all those things so we told Linda not to bring Luci till we knew I wasn't contagious. It all came back negative so they just decided the cough was from the fluid in my lungs. She got to bring her about 4:00, but Luci had such a hard time when it was time to go. She would say, "bye, bye," and start to leave, and then start crying and turn around and run back to me. Linda had to just take her and she was bawling. It broke my heart. So that night Chris just came to see me without Luci. I didn't want to put her through that again. They also did another x-ray that day and it actually looked like the fluid in my lungs was mostly gone, and the fluid around the lungs was lessened. I did still have fluid in my abdomen.
Friday morning I was so excited to go home, but my temperature was 100 degrees. It had been in the 99s most of the day before but the doctors weren't concerned about it then. But Friday the NP on call came to see me and said they really needed to be sure there was nothing else going on before I went home. She said they wanted to watch me till about 4 pm that day. If my temp stayed below 100.4, then I could probably go home, but if it spiked at all, then I would have to stay another night. It went back and forth as the day went on, but never got over 100 again. However, about 2 pm, the NP came back and said I would have to stay another night. She said again how sick I had been and how they just wanted to be really thorough and extra sure they weren't missing anything. They would do another CT scan, check for a UTI, and draw more blood cultures, this time testing for a fungal infection, which could be caused by the TPN. The fungal test wouldn't come back till next week, but if the CT scan looked ok, then I could probably come home the next day (Saturday). I was pretty disappointed. I still wasn't feeling completely awesome, but I always start to feel better once I go home. Mostly I was just so homesick. I think because this time we have Luci, and Chris hadn't been able to stay with me, so I was alone most of the day. I slept a lot on Friday. I was just super tired. That night they switched me to oral pain meds instead of IV pain meds. Preparing for when I would go home. I was still getting IV antibiotics and I think they gave me more potassium that day. But the rest of the time I was IV free (still had my port accessed, but didn't have to drag around an IV pole).
Saturday morning the doctors came and said I could go home! Woo hoo! The CT scan had showed that everything was improving. They couldn't see any abscesses or anything. A few days before, the CT scan had shown that my gallbladder wasn't too happy. Not really sure why, but the CT from Friday showed it looked better. Saturday morning after the doctors came, we still had to do one more dose of IV antibiotic which took about an hour. Also they hadn't been able to draw blood from my port for a few days. They wanted to get that fixed, so they put some medicine in it called TPA which is supposed to break up any clots or anything in there. They left it in for 1/2 hour and then they were able to draw blood! I was so happy about that. I get blood drawn every Monday because I'm on TPN so I would hate for them to have to poke me every time. I was a little bit irritated that they didn't do that earlier, instead of waiting till it was time to go home. But at least they got it fixed. Anyway, after that, I was ready to go and Chris and Luci came and picked me up. Chris said when he pulled into the parking lot that Luci said, "Mom!" It took her a little bit to understand that I was coming home for good. I put her down for a nap when we got home and she cried. I think she thought I was going to leave again. But after rocking and singing to her like I always do, she went down easily. She is a little more attached to Chris and doesn't always want to let him out of her sight, but she is also happy I am home. I am too. :)
Since being home, the highest my temp has been is 99.8. I feel pretty much the same today as I did yesterday when I was discharged, with the exception that I am not coughing anymore and it is much easier to breath. But if I don't take my pain medicine that has Tylenol in it, I start to feel kind of yucky again. Their worry is that the pain medicine is keeping the fever down and masking something else that could be going on. But we will wait and see what the blood cultures say. I think they checked for everything that could be wrong. The low grade temp could just be because my immune system is crappy. I have an appointment with my primary care doctor (who was kept up to date with what was going on the whole week) on Wednesday, but if anything gets worse before then, I'll call him or go back to the ER.
I'm super glad to be home, but like I said, feel about the same as I did the last couple days in the hospital. So I have been laying around and sleeping a lot. Hopefully it starts to get better soon.
All in all it was one crazy, unexpected week. We are really really glad we chose to go back to the ER Sunday night. Who knows what could have happened if I had decided to tough it out, or wait till morning. I could have gone into shock, and my organs would have started to shut down, I could have ended up on a ventilator...or worse.
We are also so so grateful for everyone who helped us this week. It is a little harder to be in the hospital when you have a kid! Thank you to everyone who has watched Luci and brought us meals. Especially Linda. It was so nice that Luci could be home and not have to go to a babysitter every day. It also allowed Chris to come and spend time with me in the evenings, which I desperately needed. We are so blessed to have all the love and support that we have.
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