As you read through the posts titled “The Hell Named Silence” and “ICU” you may have noticed that I failed to tell you about a surgery that Bri had on Friday October 21st. That is the day that she had her Gtube placed. It was actually a pretty uneventful surgery and the surgeon was very happy with how it went. It only took about an hour and once Bri recovered we returned to fifth floor only to have the CART incident that you already read about in the last post the next morning.
So now we continue with events of October 25th. Bri was doing well but they were concerned with some blood in her feces. During rounds the doctor told us that they were ready to send us back to the Hematology/Oncology floor (fifth floor) once they determined what was causing the blood. Test results were returned shortly and the medical team decided that it was just irritation from all the diarrhea that she had experienced over the past few days. Around mid morning we were told that the orders to return to fifth floor has been written and of course we spent most of the day waiting for the actual move. When we finally got to make the move we entered the unit and we were met with the charge nurse who informed us that we were going to room 5110 and Angie spoke up that we hated that room. She said that she would love to move us but the unit was pretty full. We had to accept it and we did of course. If we were disappointed in the room selection it was nothing compared to our nurse selection. The charge nurse had assigned the same nurse that we had a few nights before when we had the problems and Angie quickly piped up and said no. The charge nurse could tell that Ang was adamant that we would not accept that nurse and she immediately, and without question, went and switched nurse assignments for us. We were glad to be out of ICU because being back on floor meant improved health but we hated to be back on floor because it meant less personal care for Bri. ICU carries a higher level of one on one than care on the floor does and we were still somewhat in fear.
Throughout the day Bri had been in good spirits. We noticed that as the day wore on she seemed to be getting depressed. We really felt like she was understanding that she would not be eating normally for awhile. We wanted to talk to her about it but we wanted to discuss this with the child psychologist first. How should we handle eating at home? Do we bring her to the table? Do we eat in shifts so she does not actually see us eating? We had not been home yet but we were already consumed with guilt every time we stepped out of the room to get food. One of us always stays in the room with her in the hospital so we were already eating in shifts but how would we do this at home. We vowed that food would not pass our lips when Bri could see us. We just could not do this to her. We also were concerned about the smell of food in the house while we were cooking. How would we handle that?
The 26th was an up and down day for us. Bri was getting fed by a pump through her gtube and the nurse who programmed the pump on day shift had made a mistake. Bri was supposed to get 240 ml over two hours. We knew this and we looked at the pump and saw 240 ml on the display so we thought all was well. Not. The pump should have displayed 120 over two hours completing the feed at the recommended 240 ml feed. What does all this mean? Brianna got double feeds two and one half times through the day. She basically got a full days feeding in over about half a day. She was miserable. My big concern was that might vomit from this and I was worried that she might aspirate with her current swallowing problems. Ang was mad. I was too scared to be mad. They gave her some anti nausea meds and that seemed to settle her enough where she never got sick. Thank God. To add insult to injury, the medicine port on the gtube popped open at some point while Bri was asleep and soaked the bed with formula. Poor baby could not win.
There were positives throughout the day as well. Stacey K., Bri’s social worker at Riley, caught me in the hallway and asked if we had an iPad. I told her we did and it was a family iPad. She said that she would be to the room later to give Bri a new one. She brought it up and we noticed that it was donated to the hospital by The Aidan Brown Foundation. We are grateful for the ministry they provide and were honored that Bri received one of the iPads.
Perhaps the biggest positive happening today involved stones. Yes, I said stones. We had gone downstairs for a procedure during the late afternoon and when we returned to the room there was a gentleman leaning against the wall. No words were exchanged as we walked past him and followed the nurse pushing Bri into her room. We got her settled in and I left the room about ten minutes after we entered. He looked at me like he wanted to approach so I slowed. He said I probably did not remember him but he had participated in the fundraising dinner for Bri back in February. He was instrumental in the items for the silent auction and he went way above and beyond. As we talked he told me he had something he wanted me to have. He reached out his hand and he placed a bag with five stones in it in my hand. Then he told me a story about how a pastor had given the stones to him to face trials in his life. The stones were picked up in the Elah Valley by Jeff Faull, Senior Pastor at The Church of Mt. Gilead. The Elah Valley is the very spot that David boldly stood up to Goliath and slew the giant with one stone. If you recall, David picked up five stones. The gentleman told me that he had approached Jeff and asked if he could give the stones to me and that they prayed and cried over this. I now had the stones and as Tony Imburgia handed them to me he told me that only one stone was needed to beat our trial.
On the 27th, Angie fed Bri for the first time. It was very emotional for us and I remember Angie and I fighting back tears as she tried to make it a game with Bri by asking her what she was eating. The feed went well, as did the early feeds on the 28th and the doctors decided that we could go home if we felt comfortable. After ten days of ripped emotions and countless procedures we were taking our baby home. We had our fears how we would be able to handle her care but we knew she wanted to be home too so off we went.