Summary of Hospitalization

I haven't been quite sure how to write about the rest of Mom's hospitalization because I remember events but not in sequence, and I haven't figured out a way to tie it all together into a meaningful post. I've decided to just write it as what I remember as significant to me and hope it all lines up in the end.

I left off on my last blog post on Saturday July 19, 2014. On Sunday, I remember that I didn't come until the afternoon because I knew my Mom planned to have many visitors that morning and early afternoon. When Aunt Pat came home mid afternoon we chatted before I headed up to see her. She said Mom was in great spirits with all the visitors and loved chatting. She said Mom was the "Belle of the Ball." That made me smile. Her friend Andy took some great pics and sent them to me.

Mom with her friends from Trinity Baptist Sharon and Bud.

Mom with her brother Michael and Tammy

Mom with friends from Trinity Baptist Kate Maria, Stu, and Andy

I remember on Monday I came and I brought her bills and paid them out of her checkbook having her sign them. I realized that from now on I needed to take responsibility for this, I needed to know what bills she had and when they were due. I believe this was the day I also brought her her new cell phone case. I asked her to please stop throwing her phone when she was upset. She looked at me and ever so sweetly and innocently said, "Well...I never intend to." That cracked me up. She also had several visitors come, one being my Dad's sister Sheila who I know she had not seen in a long time. I thought that was incredibly nice of her to come and I wished she and Mom had had more of an opportunity to talk one to one. 

I remember Monday evening I left early, before I "tucked her in." I was worried about this, would she be okay going to bed in the hands of strangers? I wished I hadn't left her. I awoke to a text that Monday night was the worst night ever, all the nurses did was nag, nag, nag her she told me. I'm not quite sure what happened, but I have a feeling it was probably not the nurse's fault. My Mom requires a particular way of being spoken to and asked things of and I have a feeling that young nurse did it all wrong. I shouldn't have left early, by staying until she went to bed and following her routine I knew I eased her anxiety. 

I remember on Tuesday she texted me that her white blood cell count was severely low, she was being placed in neutropenic precautions because the low white blood cell count meant she was severely immunosuppressed and prone to more infection. This happened because of the one day of chemo she received the prior Tuesday. At the end of each cycle of chemo she was supposed to receive a shot to help keep her white blood cell count up. It was forgotten because no one consulted oncology until we asked. An infectious disease consult had been ordered but the doctor wasn't available to come in until Thursday. This shocked me. I'd guess that missing that one shot added a week to her hospitalization. It turned out that she did not have MRSA in her blood but it was a strep infection which was apparently unusual. She needed a blood transfusion that day as well. She slept a lot that day. I took this picture.

I remember sometime in the beginning of the week that I was there when physical therapy came in to work with her. The physical therapist was her friend she had known for a long time but had not seen in years. My Mom was very happy to see her. I remember I asked the therapist if she should have therapy at home thinking obviously the answer was yes, but I needed to prepare my Mom. To my surprise her friend said no she wouldn't advise it. She said she knew my Mom and she would never sit still at home anyway. If they gave her exercises to do on top of this she would do them and try to go above and beyond. She would wear herself out. The therapist was right, I hadn't thought of that. 

I remember on Thursday probably about 9 PM, the infectious disease consultant came. The doctors and nurses had said he was the best, that he was worth the wait. I'd say he spent at least 45 minutes with my Mom taking her history and examining her. I was very impressed. She had wounds on her legs from swelling and I remember that he unwrapped them and then he rewrapped them as they were before. Fellows nurses know that that is a sign of a great provider and one who was obviously considerate of the nurses' time. My Mom took to him very well. She was in good spirits after his visit, I took this picture before I left.

I think it was also maybe this day that before I left she said, "I'm sorry I won't get to see Lydia grow up." I said, "I know, but Caitlyn needs you in Heaven." 

I remember that week Mom was going down for her daily radiation treatments and Carly wanted us to speak to a radiation oncologist while there. Both her normal radiation oncologist and her medical oncologist were on vacation the majority of her hospitalization, what luck. Mom was having pain deep in her left hip area I think, an area she was not receiving radiation to. Carly wanted to know if radiation would be beneficial to this area. The radiation oncologist looked at her reports and was somewhat confused because in the particular area Mom was pointing to there didn't appear to be cancer. He called the nurse the next day and told her to put me on the phone. He had looked at her scans more closely and saw what others had missed, she had fractured her pelvis. We're not sure when. Maybe she had fallen and hadn't told us or more likely the cancer had just eaten through her bone. He obviously advised against radiating this area. 

I remember on Friday I decided to stay home for the first time. I had been traveling to and from Muncie each day an hour each way. I of course didn't mind but I was worn out from traveling, the emotion of it all and caring for a 2 year old and 6 week old and coordinating child care. I had tried specifically to get pregnant with Lydia so I would have the summer off and it worked. This was not at all the maternity leave I had imagined. God had different plans for me. I enjoyed the day off at home. I sat outside and watched Amelia play and it felt wonderful.

I had tried my best to arrange with my Mom's friends for someone to be there to help her at bedtime. I was very, very nervous to leave her. 

It was also on Friday that I talked to my manager about returning to work. How was I going to work and take care of my family and my Mom? At the time, we had a weekend option nurse practitioner. He only worked Saturday and Sunday and took all the weekend call. He was leaving. I'd hoped I could have that position. I knew I would need to move Mom in with me. I didn't know quite how, I thought maybe we could turn the dining room into her room. My major concern was the bathroom. We only had a half bath and it was very narrow. It would be very difficult to navigate with a walker, impossible with a wheelchair. There was no bath or shower on the first floor and she couldn't climb stairs. However, we could make it work. I Googled portable baths on Amazon. I figured I could watch the girls and take care of Mom during the weekdays and work the weekend. Maybe Ryan and Carly or her friends could come on the weekends. My manager told me however that they were eliminating the weekend option position. I had no idea what I was going to do. How could I ask Spencer to care for a 2 year old, a baby, and my ill mother? That would really be pushing our wedding vows to the limits. I had to hold back tears on the phone with my manger. I could hardly talk. I managed to get out, "I'm so stressed out. I need to take care of my Mom." She said, "I know, I know." I can tell you that any future house Spencer and I have will be able to accommodate a sick parent or family member if needed. I will not make that mistake again. 

I remember on Saturday I brought Lydia up. I had avoided taking her due to the staff's suggestion because of Mom's immunosuppression, but her white blood cell count was going back up and the infectious disease doctor said it was okay. I remember I went to the bathroom and I asked Mom to hold her and watch her while I was gone a few minutes. It felt great to give her just a few moments of responsibility for my child. I missed the Mom who was able to care for my child. I came back and captured my absolute favorite picture of Mom and Lydia.

I remember that at some point during Mom's hospitalization Lydia and I had a great breastfeeding victory. She latched without the stupid shield. I never achieved this with Amelia. I didn't think it would ever happen. While it was still a significant struggle, getting rid of the shield was a major victory. 

I don't remember what day it was but close to Mom's discharge which happened on Tuesday July 29, 2014. I think maybe a nurse was in the room and I don't know what triggered it but Mom broke down. She was tired of being in the hospital, she was tired of being sick, she wanted to go home. Her pastor walked in the door, but I knew Mom wasn't up for visitors so I talked to him out in the hall. I said she was ok, she was just overwhelmed. He understood. I went back in and sat with Mom and just held her hand while she cried.