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.

Sunday, August 6, 2017

Hospital Stay #21-Sepsis

Well what a week it has been! I never expected this to happen...

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. :)

I had wonderful nurses and doctors during this stay, which always makes a huge difference. I think that because it is a smaller hospital, they are not as busy and can give you more attention, and they were all just super nice. Especially the ICU nurses. One thing that did upset me was the Nurse Practitioner on call. She was the one I saw in Urgent Care last Friday, and the one that sent me to the ER. When she was on call for the med-surge floor, she came to see me and that first day she gave me a big lecture about how when I go to Urgent Care I need to tell them that I am on Remicade. She said that would have helped her out a ton and she would have realized that I have a compromised immune system. She went on and on and I was starting to cry. Like I got the hint after the first time she said it. I did cry after she left, so it was a good thing Chris was there and could make me feel better. I wanted to be like, "shouldn't you look at my past medical history and my medications?" But whatever. I think she thought it was her fault that they missed the infection the first time but she sent me to the ER so there really wasn't much else she could have done. The ER doctors are really the ones who should not have sent me home. She was nice the rest of the time, but when I was discharged I got another huge lecture about coming back or calling my doctor if anything got worse again. 

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.

Hospital Stay #20

Again it's been awhile since I have blogged. My life is crazy. But I would like to write about my hospital stay in February, and my most recent one. I have been blogging about my health for several years and like to look back on what has happened, so I do want to catch up.

Back in February I was not feeling well. I had lost a bunch of weight again and weighed about 85 pounds. I was in a lot of pain. I kept having nights where I would get really sick and feel almost like I had a bowel obstruction. I was in Idaho doing a preschool book fair (on my birthday) and I called my doctor and asked if we could do a scope and she said she could get me in the next day. I arranged with my cousin and niece that they would watch Luci. I drove home late the night of the 22nd and got home at like 1 or 2 in the morning. It was snowing and it was an awful drive. Then we had to leave again early the next morning to make it to Salt Lake. My appointment was not until 2 pm, but Chris had an audiology appointment first thing in the morning. Our plan was to go to his appointment in SL, then drive to Orem and drop Luci off with my niece, who would then take her to my cousin's when it was time for her to go to work, and we would come get her that evening when I was done.

Apparently the day before, there had been a huge semi wreck (and I want to say a fire?) that took out one whole side of the freeway. It was the next day and they were still cleaning it up. We sat in traffic for like 3 hours (which is really rough when you are doing a bowel prep of a scope!) and didn't make Chris' appointment. We rescheduled it for a a couple hours later and missed that appointment too. We ended up turning around and going to Orem to drop Luci off at my cousin's (because my niece already had to go to work) and then went right back to SL for my scope. I was not feeling well, and going all day without eating or drinking was not helping.

When we got there they gave me some zofran for nausea. My doctor did an upper and lower scope since I had also been having bad heartburn. When I woke up she said the upper part looked fine. But she only got a few inches in and there was a spot that was super narrow and she couldn't even get her scope through. She was able to kind of break through some scar tissue and stretch out the narrowing with her scope. That is probably why I had been getting somewhat obstructed.

When I woke up I was in pain, and nauseated and dry heaving. I was crying. My doctor said the stuff she did could have caused pain, etc. She was a little nervous about us driving 3 hours home, in the snow, with me feeling so sick. She gave me the choice of staying or going home, but kind of acted like she would rather me stay. I was not really in any shape to go home so I agreed to stay. She wasn't able to finish the scope and look at the rest of my intestines, so she said if I stayed, we could also do an MRI and look at the rest and see if there was any inflammation, etc.

Chris stayed with me until I got settled in a room and got some meds and was feeling a little better. Then he went back to my cousin's and took care of Luci and spent the night there. I arranged to have my niece watch her the next day, so the next morning, he got Luci ready and dropped her off with my niece, then came to the hospital to be with me. He didn't get there till about 11 or 12 though, I think. They had found that I had a UTI so they gave me a dose of an IV antibiotic, then had me do the MRI. It didn't show much if I remember right. There could have been lots of reasons I was having pain, however. All my bladder issues sometimes cause me pain, and I did have a UTI, scar tissue causes me pain, etc. My doctor ordered me some TPN and the pharmacy delivered it to the hospital as we were leaving. We finally got out of there about 5 pm. I wasn't feeling tons better, but at least knew that there wasn't anything serious going on. The fact that there was not a lot of inflammation was just another testament that the Remicade infusions I get are working.

We were able to go to Orem and pick up Luci and got home that night. It was a crazy couple of days. I was super glad to start TPN. That was the end of February and I am still on it. Typically I stay on it for about 4 months, but I think this time the Dietitian is not in a hurry to get me off of it, since I always end up back on it anyway. They have figured out that if I do the lipids separate from the TPN, and only 3 days/week, that my liver stays happy. Elevated liver labs has been a big reason why I have gotten off of it in the past.

Cuddling Luci when we got home

The next week or two I was still not feeling great, and still feeling like I was somewhat obstructed. I was being careful with what I ate and trying not to eat things that would cause problems. I went and had a test done called a Small Bowel Follow Through, where they have you drink a bunch of contrast, then take a bunch of x-rays as it moves through your system. They can see where the contrast goes and how fast it moves, if it gets stuck, it there are any fistulas or other trails that it follows, etc. They were pretty thorough but didn't find much. Only that down by my ostomy, my intestine curved at like a 90 degree angle, in a big "S" shape, and that that could possible causing some problems too. Not the answer I wanted but it was helpful to know. Over time, those symptoms kind of went away and I haven't had any problems with that for awhile. In fact I have been feeling pretty good.

Like I said before, I am still on TPN, but now am only doing 4 days per week. The dietitian doesn't want to stop it just yet, but I didn't want to gain any more weight (I have gained 25 pounds and none of my clothes fit me now), so we agreed on just 4 days a week now. I have just been maintaining my weight which is fine with me. :)

Thursday, March 9, 2017

Luci Faith

It has been far too long since I have blogged and I have been itching to do it again. I have so much I want to write down. Our experience of getting Luci, my health updates, etc. I always intended to blog about when Luci came into our lives, but life is pretty crazy when you have a one year old, a book business, and 2 chronic health conditions. I did write all about it and my feelings in my journal, but still want to update here. I have also missed writing about the progress (or setbacks) of my health. Which may sound really weird but I have found that talking about it (or writing about it) is very therapeutic for me. I have friends I know in real life, and friends online that I can talk to, as well as my mom and husband, but there is something about writing out the whole story that really helps me. I actually would probably make some Youtube videos if I wasn’t scared of putting myself out there for strangers to see. It also really helps that I can go back and read past posts, to remember what happened exactly, and to sometimes to find comfort-that things turned out all right back then, and they will now as well. So it’s my goal to catch up to the present time, and continue it. I think I may have to give up some other things, at least for awhile, but that is ok.

I just read my last blog post, from last summer when I had a fever for 3 weeks for no apparent reason. To fill in on that, basically we never found the cause and eventually it went away. We were able to continue TPN till I reached my goal weight, which was the end of July. Right after that we left on our cruise that I earned for free through Usborne Books and More. That definitely deserves a blog post of it's own but I have it documented somewhat in a chat book so I'm going to skip it and head straight to Luci. :) Here are some cute pics of us on the cruise though. 

 Last summer we also enjoyed going to my niece Jenna's wedding in July and Chris' brother Robby's wedding in August.

Ok now let's cut to the chase. I’m going to go way back to the Fall of 2015. We had been trying to have a baby for over a year (in addition to not being able to try to have a baby before that, because of my health, we had been wanting a baby for at least 3 or 4 years). In that time, we had been seeing a fertility doctor and done lots of tests. We were told that we both had some problems that were preventing us from becoming pregnant. The doctor said that the only way we would get pregnant was through IVF, and that other fertility treatments wouldn’t even be worth trying. This of course was not guaranteed either, but he seemed optimistic.

From there we needed to decide if we wanted to pursue that, or adoption. At one point a couple years before that, we had our papers ready to turn in to LDS Family Services, but then they announced they would not be doing adoptions anymore. So I was pretty open to adoption because we had already talked about it a lot in the past. However, my patriarchal blessing says that I will have the opportunity to bring spirits into the world. I felt like a terrible mother if I didn’t even try to get them here. So I really wanted to try IVF. However, about that time, my health was worse again and I was back on TPN. We had finally pursued getting pregnant because my health was in a good place. But with the way it was then, we didn’t know if I would be able to handle being pregnant. Especially so far from home and family. After a couple of months of fasting and praying and going to the temple and doing that all over again and again, we decided adoption was the best option for us at that time. I wanted a baby so bad, so I was so anxious to get started and felt at peace with our decision.

We were researching agencies in Utah and really had no idea who to go with. We had found one online that I had talked to on the phone a couple times, and we were leaning towards going with them. However, Chris’ boss said she had a couple neighbors who had adopted through a different agency in Utah, and offered to put us in contact so we could ask them some questions. It was so helpful to go and talk to them and hear exactly how the process was for them with this agency. They actually told us that they had started with the agency we were leaning towards, but because of how slow they were, they ended up switching. After 6 months of classes and paperwork, they still didn’t have their papers in and still did not have their profile being shown to any birth parents. Once they switched to the other agency, they had a baby in 2 months.

After praying some more, we decided that would be the agency we would go with. It took us about a month to get all the papers and documents in to them that they needed. Then we had a home study and we were finally being presented to birth families. This was at the end of April, 2016.

The agency had a process. They would email us about different situations, tell us about the birth mom and baby, and price. We would reply back whether we wanted our profile shown to the birth mom or not. One thing about the agency is that most of the situations they sent us were far more expensive than what we had been told. That was the frustrating part. We were prepared for up to a certain amount, so we had to say no to many, many situations. Through the summer we probably only said yes to 2 or 3 situations. That meant that they showed our profile to the birth mom, along with just 2 or 3 other families. This is what makes the process faster. The birth mom is not looking through dozens or even hundreds of profiles to choose from. She is choosing between 3. Sadly we got our hopes up a couple of times, and in the end, the birth moms chose other families. However we realize that that is really lucky. The process seemed hard and was like a roller coaster, but I know it could have gone on for far longer and been much harder than it already was.

The Friday before Labor Day, the social worker at the agency called me on the phone and told me she was emailing us a situation, and pretty much needed to know right then whether we wanted our profile shown. I told her I would check my email right away. I read about this sweet little 9 month old girl, and as I scrolled to the bottom, my heart caught in my throat as I saw a picture of her. She was adorable and I was in love right away. The price was exactly what we had planned on spending (which sounds bad, but that meant that this was a definite possibility for us, and that was exciting). I told the social worker yes without even asking Chris first. Of course I forwarded him the email and as soon as he saw it, he agreed too!

We went home to Idaho for Labor Day Weekend. All weekend it was on my mind and I showed our close family members the picture of this sweet girl. Chris’ mom and grandma both cried as they saw the little girl who could be their new granddaughter. The agency had told us that the family was coming to Utah that weekend, and they would show them our profile.

Tuesday (the day after Labor Day), around noon, I got a phone call saying that the birth parents wanted to meet Chris and I ASAP, and wanted us to come to SL right away. I called Chris and he came home from work, we packed a bag to stay several days if needed, brought the car seat, pack n play, and diaper bag we had carefully picked out back in May, (you can ask Chris about my Diaper Bag Blues if you really want to) and went to meet the family. We first met with the agency and were told a few more details. The parents had a 3 year old son they were parenting. About a year before, they had placed another son for adoption through this agency when he was a few months old. At the time, she was pregnant with Luci and they were struggling a lot financially, so they decided to place him for adoption. Fast forward to Luci being 9 months old, and they still were struggling to make ends meet. They knew that they could not provide for her like they wanted. So they made the unselfish decision to place her with a family who could. They told us they wanted someone with no kids who could give her a lot of attention right now.

We went with the director of the agency to their hotel room to meet them. We sat and visited for a little over an hour. They asked us lots of questions and we asked them questions. They were so nice. We both held her for a little while. She spit up all over Chris and he didn’t even care. :) While visiting with them they asked us more about my Crohn’s disease. I had mentioned it in our profile, but didn’t go into a lot of detail. They said they liked that I was completely honest in the profile about it. It didn’t seem to phase them at all, they were very nice about it.

While we were in the room, the birth mom was texting someone on her phone. After we left the room, the agency director told us that the birth mom had been texting her and telling her that she really liked us! They were pretty sure they wanted to choose us, but wanted to meet us one more time to be sure. We went to bed very hopeful that night, but at the same time, trying not to get our hopes up too high.

The agency had said not to expect a phone call too early, because they tended to stay up late and wake up late. We waited all morning for a call, expecting to hear a time that we could go see them again. Chris had an audiology appointment first thing in the morning that we went to, and then I convinced him to go shopping. We went to Target and bought a few basic baby things (diapers, wipes, formula, baby food, soap, etc). We didn’t know if they would give us clothes or bottles, etc, so we just bought the very basics. And one outfit that said, “New Girl in Town.” We ate lunch and while we were eating (around noon) they called and said that the birth parents decided they for sure wanted to choose us. They would sign papers at 2 and we would sign at 4. We hung up and were SO excited!!

Carter’s was pretty much across the street and they were having a huge 40-60% off sale so I convinced Chris that we needed to go inside. Of course I couldn’t contain myself once we got in there. I picked out some onesies and pants, a couple pairs of pajamas, a hoodie zip up jacket, 2 dresses, and a couple outfits. When we went to check out, I told the girl helping us that we were on our way to adopt our little girl in like an hour. She rang us up and then told us that she gave us another 25% off, on top of the sales. When she told me that, I started to cry!

We went back to the agency and signed all the papers. I asked them how things would go, ie would I have to take the baby from the birth mom, etc. They assured me that the agency director would take her, and then we would leave the room and then she would be given to us. I just really didn’t want to have to be the one to take her from her birth mom. We went back to their hotel room and they had her dressed and ready to go. We talked a little bit more and then it came time to go. The birth parents took her and both said their goodbyes. The birth dad was crying. The agency director was trying to distract/play with their 3 year old. She wasn’t stopping so finally the dad just turned to me and put her in my arms. I lost it then. The agency director took a picture of all of us (which I have yet to see) and then we left. Just like that. She didn’t cry or anything (until we put her in the car). As we left we talked to the the agency director some more and she took this pic of us.

She did not like the car seat. She cried for a few minutes. Looking back she was probably really tired. Now I also know that she just hates the car seat, ha. They didn’t end up giving us anything so I was glad we had gone shopping and gotten the basics and some clothes. However, they had told us that she wore 9 month clothes, and once we had her I could tell that was definitely not the case. Every single thing we bought for her was far too big. It was about 7:30 by this time but we found another Carter’s and stopped there. She was tired so Chris held her while the nice lady there helped me find each thing we had bought, but in a smaller size, and exchanged them all. I changed her into pajamas in the car and gave her the soft pink blanket we had bought at Target. She loved it and cuddled up to it immediately. We drove home and she slept the whole way. We set up the Pack n Play in our bedroom and she went right to sleep again. She slept all night and woke up happy and smiling.

This pic was taken the very next morning

Sitting up by herself on September 10th-3 days after we brought her home!

First Sunday at church!

A lot of people ask me if it was a hard adjustment for her and/or for us. I really don’t think it was. Like I said, she woke up happy the next morning and it was like it was meant to be. We were able to get into a routine pretty easily. (Of course, we recognize that she did have her life turned upside down at 9 months, and we need to take care and remember that, and realize that she may be dealing with some effects of that).

We had another decision to make when we brought her home, and that was what to call her. I won’t go into tons of detail, but they had named her Rooney Faith. They had asked us what we thought of the name, and we told them we thought it was unique, and that we like unique names (which was true). Even though I thought it was very interesting, I had somewhat gotten used to it because that is what I had been thinking of her as for the last 5 days. But the more I thought about, she just didn’t seem like a Rooney to me. I had also always loved the name Lucy, and especially liked it with an “i,” on the end. She seemed like a Luci to us, and so we decided to change her name. Her birth parents are aware and they seem ok with it. We kept her middle name, which is Faith.

We brought her home on Wednesday night, and Thursday night, had to go back to SL because I had a procedure early Friday morning at LDS Hospital. It had been scheduled for about 2 or 3 weeks and was kind of urgent. I had been having major bladder issued and so the urologist was going to do an Exam Under Anesthesia. Chris’ mom met us at our hotel on Thursday night, went to the hospital the next day and was there helping Chris with Luci while I was gone and recovering. Good thing too because he would have not had any idea on what to do with a baby for all that time, lol. His mom followed us home afterwards and stayed for the weekend. It was so nice to have her there to help us. Especially because I woke up in lots of pain, which was really unexpected. I’ll write about it in another post, but the exam caused me to have really bad bladder spasms, so I was given TONS of pain medicine. Good think Chris’ mom was there to help take care of there that night!

We had stopped at Target on Thursday night and bought a Bumbo to try and help her learn to sit up. I think it only took 3 days and she could pretty much do it on her own. She struggled with tummy time, and just got tired easily so she couldn’t hold her head up for long. As time went on though, she learned to sit up for longer, hold her head up for tummy time, roll over, scoot, and she crawled by herself for the first time on December 2nd, just a few days shy of being with us for 3 months, and a few days shy of her first birthday. Since then, she has learned to pull herself up to furniture and walk all around it, and can now stand by herself for a several of seconds. She can do many other things, such as play peek a boo (with only one hand most of the time, but still), say mama, dada, uh oh, and sign the word please, along with lots of other tricks. She had 4 teeth when we got her and now has 12. She weighed just under 16 pounds the beginning of September and now weighs 22 and is wearing mostly 9-12 month clothes.

Today marks 6 months since she came home with us, and she is now 15 months old. That also means that our adoption can be final. We have had all the post placement home studies and are now just waiting for a court date, which should be any day. After that, we can take her to the temple and be sealed to us! We really can barely remember what life was like without her and count our blessings every day.

Sometimes I wonder why Heavenly Father made me wait until she was 9 months old to bring her home. Why couldn’t her birth parents have decided to place her earlier? It would have been easier on both them and us. Why couldn’t he have sent her to us when we turned in our papers, 4 months earlier? As I was first wondering these things, my sister pointed some things out to me. If she had been presented to us very first, we would have said no because we wanted a newborn and we would have thought they all would be that price. When she was born, we were still deciding between adoption and IVF and even had we known about her then, I’m not sure we would have thought to take her. I think the Lord knew the timing with which it all needed to happen, and I’m so glad that He knows what is best, and not me. We have an open adoption, which means that once a month for the first year we send her birth parents pictures and a letter in the mail. We told them we would be open to visits and they already want to visit soon, along with her other biological brother they placed for adoption. It will be neat to see her with her brothers. I recently also started a FB group for her birth mom and dad and post pictures and videos there as well. They wanted to be able to see more of her and this was a good way to do it. They are going through a tough time, trying to get back on their feet, while missing her at the same time. We are thankful everyday for their sacrifice and for their love-so much that they wanted to give her a better life by placing her for adoption. We pray for them and will continue to pray for them with Luci so she can hear their names and know of them.

Here are some pics they sent us of her as a newborn. 

 Is she not just precious?! My heart aches when I think about not knowing her during that time, but I still believe Heavenly Father was right in his timing. 

Adoption is not how I imagined that I would bring a family into the world, and it is definitely not easy. But we are learning our way and I wouldn’t have it any other way. I wouldn’t trade her for anything in the world. We are so thankful for the all the prayers on our behalf, in helping us get her here. We have such great family and friends. The wonderful baby showers I was given helped us so much. The only things we had when we brought her home were a car seat/stroller, pack n play, diaper bag, and rocking chair, but after the baby showers, we had everything we needed. We have slowly got our office turned into her bedroom, and finally got everything hung on the wall. I will post pictures of that in the next few days. I have one more sign to put vinyl on.

We hope to not have to go through an agency in the future, for financial reasons. I would like to be able to try IVF in the future, if we live closer to family and if my health is better. Maybe we will do foster care, maybe we will do private adoption, I’m not sure. I’m thankful for the way we did it this time because it helped us get a baby quickly. I’m not sure how much longer my heart could have waited. Crying every time I went to church and walked by any baby items at the store was getting pretty old. I hated not feeling happy when my friends’ kids had birthdays, or when my friends were pregnant. It was so hard wondering when it would be my turn to be a mother. I wanted to see my husband be a father. Luckily we have the best family ever who helped make it possible to get her here.