City of Hope Post surgery update/City of Hope Hotel

My dear friends,

I apologize for the delayed update, it was a mixture of many factors. Sorry for the very long update, please bear with all the mistakes and I hope it is clear enough.

Praise and glory to God for a successful surgery and for His love and mercy He has been pouring out over me and my family. I love you Lord.

When surgery was over, Damien was not with me. I asked and begged for him many times. I was told he would be called and come. We figured out that they didn’t call him for an hour or more. I was on verge of tears begging for him and was very relieved when he got there. My first 36 hours were difficult. Damien said the first nurse was very impatient, inattentive and rude to me. I don’t really remember much of that. Sometime in the evening I asked to eat. The night nurse told us their protocol is to have the speech therapist sign off on the patients ability to eat and diet. She told me I had to wait because the speech therapist had gone home and couldn’t tell us exactly when she would be back. I waited longer and asked if there was anything I could have, I was so hungry. Eventually they allowed me to sip chicken broth and apple juice during the night. On Wednesday the morning, they could still not tell me what time the speech therapist would be in to sign me off to eat. I could clearly talk and swallow but the one lady I needed to sign off was not there. Sometime after 8am on Wednesday, I stopped eating at 8:30pm Monday night (36 hours), we asked again, the nurse still did not know when the speech therapist would be by. Damien got upset and told the nurse he was going to get me food and be responsible for it, but I needed to eat. I know it was difficult for the nurse because she needs to follow “protocol “. It seems they need someone else to be able to sign off when speech therapist is not available. The nurse was very kind and eventually allowed me to eat soft foods. I ate around 10am, over 36 hours later. The speech therapist ended up coming in a little after 11am and signed me off for regular diet. I was happy to be able to eat. I had a couple great nurses in the icu (Darla and a night nurse who we unfortunately can’t remember her name)and things were better. Wed. Night they told me I was going to bed transfered out of icu. I was experiencing right side weakness and a ton of pressure behind my eyes and front of head while still in icu. They took me in for a ct scan and it showed Pneumocephalus, which is a collection of air or gas in the brain from surgery. They put me on oxygen to help get it out. It did help a lot.

At midnight I was transferred to the general surgery floor, they had warned me that I may need to share a room. I was very nervous about this because I am very light, sound and stimulation sensitive after surgery. Praise God I was able to get a private room. When I arrived I there were 2 nurses that greeted me. One was training the other. The nurse being trained had seen in my chart that I had 8 children. She was very loud and was talking to me about kids at midnight. I didn’t want to be rude and tried my best to engage. She then began to loudly tell me stories of her son and was literally jumping in my room to show how her son likes to try and touch the ceiling. This was very challenging. The other nurse helped me and told her she needed to be quiet and calm down. Keisha was an amazing nurse. The rest of her shift she made sure everyone who entered was quiet, calm and to keep the lights low or off. I heard her tell another loud nurse to be quiet and the other nurse said she was about to leave. Keisha said OK. She was advocating for me, very attentive, made sure I was comfortable and that my oxygen stayed on. The pressure was much better by Thursday and they did an mri said it got much and it didn’t need the oxygen anymore. They did see a sinus infection above my right eye and put me on antibiotics. Thursday was another difficult day. At shift change it was so loud, there was literally nurses hooping and hollering. I learned later they were celebrating a nurse receiving an award. I dont know if it is the building or nurses or what but that floor was constantly so loud. I could hear all conversations, machines going up and down the hallway, trash cans slamming, things being hit against walls. It was awful. Thursday I had physical therapy come and a lot of people constantly coming in. I only got to take a 30 min nap the whole day. I was exhausted and the noise and lights were bothering me tremendously.

Damien and I were doubting our choice to come here because our after surgery experience at hoag was drastically different. Also on Thursday, with all the people coming in I hadn’t seen my nurse in 4 hours. My head was hurting badly and it was time I could take pain meds. I pushed the nurse button and they told me she would come. 30 min went by and she hadn’t come, so I pushed the button again and told them she never came. She was surprised and I could hear her tell my nurse to come to my room. She finally came and gave me the pain meds.

All Thursday was loud and busy but a lot got in order and they told me I can be released Friday. Thursday night was another difficult night with loud noises and lights, I was exhausted and it was difficult to sleep. Friday morning, I was talking to the nurse about the noise level and she was surprised when I told her I heard many things from her morning meeting at shift change. I told her some things I heard, and she was surprised I could hear that. You can hear everything! She did say that their floor is notorious for being loud and they got 3 grievances last week because of the noise. Maybe I has to do with how the building is constructed, I dont know but they need to find a solution. I also think that if they do not have a separate floor for neurosurgery, the nurses need to be trained better in the side effects that a neurosurgery patient has verses someone who had surgery on their abdomen or other body part. They need to be aware of light, sound and stimulation sensitive patients. They think they are being kind and caring when they come in, turn on the lights, greet you with energy and talk with you. I don’t blame them, they just were not aware.

I was complaining to friends and my parents. I needed to complain less, suffer better and offer it up.

On Friday morning, Dr. Badie came in and explained more of the surgery and what he found and took out. There were 3 sections. 2 in front were connected. The front he said was all scar tissue that he removed. The second section was scar tissue and tumor mixed. The last section which was separated was all a new tumor. He did not need to cut anymore skull which was wonderful and I feel less sensitive than i did after first surgery and the pain has been much more manageable this time as well. The incision is also shorter than the first time. He talked about radiation and explained that he thinks the Proton radiation might not be the best option after all because it may be too targeted as well. He suggested getting radiation with a larger margin to ensure they kill everything around it that might be microscopic now might be better to prevent regrowth again. Dr. Badie talked to Dr. Schwer from City of Hope in Irvine. She did the Cyberknife radiation on me and is an amazing woman. I trust her and like her very much. I will make an appointment when we get home to discuss all this.

I was approved to stay in the city of hope hotel for a week. 4 nights being covered by insurance and having pt come to me there.

At discharge, they told me a walker and bedside commode that I can also use as a shower chair would be delivered to my room that day. I was released!!

A wonderful man named Tom wheeled me out and brought us to a shuttle that took us to the hotel.

This hotel is amazing. We have a studio with full kitchen, living area with couch, and bed. It is quiet, calm, peaceful and very comfortable. I immediately felt so much better being here. We will stay here until Friday. The only bummer was that my walker and bedside commode were never delivered. We spent over an hour on hold with the company and no one ever answered. They hospital didn’t know why it wasn’t there, the hotel didnt receive any notes on it. The physical therapist came by and said he got an email saying it was delivered to my house. I had the older girls check and nothing was delivered.

Yesterday, 2 of my friends brought Leah and Eden to visit me at the hotel. It was wonderful to see friends and the older girls. I have such amazing friends and family. God is so good to me. My parents ended up being able to come visit at dinner time and they brought me a friends shower chair so I can shower today. It was encouraging and uplifting to see them. I was able to sit on the couch and visit with everyone.

I still don’t have a walker but Damien has been looking online to buy one. Damien is incredible as always, helping me and caring for me the whole time. He did find a wheelchair nearby and bought that.

The whole time my incredible family and friends have cared so beautifully for all the kids. I didnt have to worry about them. I miss and love them so much but im at peace knowing they are so well cared for.

im doing well now and praying for all of you and trying to offer up everything and suffer better. God is good to me. God bless you all and thank you for everything. Im sorry if this post is all over and I hope it makes sense and is not too much complaining. Im surrender to Our Lord and need to trust in Him.

God bless,

Ashley