While it was a long 6 days and 5 nights in the hospital, there were some smiles.
I clearly remember the relief of seeing her in the Cardiac ICU and watching her breathe – my favorite moment in those first hours after open heart surgery was when the room was filled with the Cardiac fellow, her nurse and a pulmonary specialist as they brought her out of sedation and removed the breathing tube. It was 2:AM and I was exhausted. Genevieve looked at me and said her first post-surgery words . . . “I love you”, “where is daddy?” and “where did you sleep?” I promised her that she would not spend a night alone in the hospital so she wanted to know exactly where I had been sleeping. Being in the CICU, there was a small sleep space behind her by the window. While comforted to know that I was there, she didn’t like that I was out of sight. It was a happy day when she moved to a large private room on the floor where she could see me sleeping on the couch.
The next smile is a memory that belongs to Al. He was with her when it was time to get her out of bed and up on her feet. In only a hospital gown, she refused to put on underwear to walk the halls. She just wanted to get it over with and then back to the comfort of her bed. She speed walked those halls with a scowl on her face. My angry girl walking. For the next couple of days, chest tubes still in – this was the routine. It felt like I had to skip at times to keep up with her as she walked the minimum with the goal of getting back to her room as soon as possible.
Taking her various medications was a challenge – anti-nausea, various pain killers, blood pressure, laxatives and more. Every time they asked her to take something, she would question the nurse as to what it tasted like. Sometimes they would try to answer, sometimes they would tell her that they didn’t know and that she should take it and then tell them what it tasted like. One day, Genevieve tired of the game and flat out refused to take her medicine. She pointed at the IV in her neck and told her nurse Alex to “just put it in there”. When told that it was not that type of medicine, she continued to refuse and told them to get that kind of medicine.
We were fortunate that we had a large private room in the new section of 8 East. It was perfect as Genevieve had many visitors over her last 2 days in the hospital. At times, it seemed like a party with her friends from West Roxbury School of Dance. Despite the patient “fall hazard” warnings on the door, my daughter ruled that room jumping around, dancing with her bouquet of balloons and filling the space with laughter. She refused to nap and would be up all hours of the night. I cannot imagine her with a roommate – they either would have joined in or would have been requesting a room change far from our little social butterfly.
Once her chest tubes were out and she no longer required us to carry them around behind her. Genevieve started to assert her independence. The first time she decided to get out of bed on her own, resulted in a nurse flying in to see what was going on. My baby decided to unplug all of her heart monitors setting off the alarms in her room and at the nurses’ station. The nursing team learned to let Genevieve be. She wasn’t going to buzz and wait for them every time she wanted to use the bathroom. So she would unplug all the monitors, get out of bed and when she was done . . . she would climb back in and plug everything back in on her own. What it must have been like to see Genevieve go off line and then come back a few minutes later!
These are some of my happy memories from a truly difficult time.