I should have taken more pictures of her life.
I should have taken more pictures of her in the hospital.
The last picture I took of her before she went to the hospital was this.
The next picture I took was this one.
A difference of almost 5 days. From Monday night to Friday or Saturday.
I have a hard time remembering everything that happened during those days.
I do remember we were on the 3rd floor for only 2 days. I remember not leaving her side and unlike in the PICU where I had to leave her twice a day while the nurses switched shifts I didn't need to leave her here. I remember I got breakfast off the cart they had come around in the morning and Ryan had brought me some food when he came after he got off work. Other than that I didn't eat. The majority of the day was spent going from one test to another. From one machine to another. Hearing from one doctor to another that they were stumped. She was on oxygen and kept having to up the amount she was getting. She was getting worse. Her body was failing and no one knew what was going on. I don't remember the nights in that room. I don't remember how I slept or where I slept. I did hold Makenzie a lot. She was on oxygen but I could still pick her up and hold her as I please. Little did I know how that would soon change. Those oxygen wires were enough to drive me mad but they were nothing compared to what was to come. I remember we had people come visit those days but unfortunately I don't remember who. I don't remember how long they stayed or if they brought a present for Makenzie. I wish I could remember. I remember the day Dr. Swoboda came into her room. I was alone. Makenzie was really bad at this point. I was holding her when she walked in and asked if I would lay her down so she could observe her. I remember Kenzie immediately started going into distress. I kept trying to get closer to her because I know she just needed me. I could always calm her down and help her. Dr. Swoboda was observing her and doing a couple tests or something. There was probably 2-3 other doctors in the room, a few nurses and Dr. Swobodas assistant.
Dr. Swoboda didn't ask me many questions. I assumed I would have to say the same story that I have told about a billion times already to her. She didn't ask me much. I kept looking at Makenzie who by this point was crying but not making much noise as her vocal cords were paralyzed from the surgery she had a few weeks before. Her stats were dropping and she was arching her back so much while laying on her side gasping for air that her head was touching her back. Literally. I had never seen her that arched before. I was sick. I tried to move and I tried to do something. All while trying to listen to what Dr. S was saying to the people around me. I remember hearing that she was crashing and they needed to drop everything and get her intubated and to the PICU now. I didn't really understand what all that meant at the time. I was kind of moved out of the way as many more people came in and started to unhook all the machines. Dr. Swoboda didn't leave Makenzies side. She said something to the effect of I know you don't understand this and ill explain it to you when I can. She then continued shouting orders. She was not talking as quietly anymore. Another doctor came over to me who I'm sure saw the look on my face and explained to me that my baby couldn't breath and they needed to put a tube in her mouth to breath for her. That she would just need it until she was stable and they could figure out what was going on with her. A caseworker came in and grabbed my bags. I called Ryan who was off work and had just grabbed some food on his way up to the hospital.
I swear I had to tell him all the bad news over the phone.
I followed her bed. Still trying to get close to her but not being able to because of everyone that was around her. I was lead by a few other doctors and we went down a floor into the PICU. I remember walking in those double doors. Walking past those kids who were hooked up to a lot of machines. Seeing a parent or 2 sitting next to their child's bed. It was an extremely sad place. but also one that gave me a lot of comfort. I felt like she was going to be okay. They would know what to do with her here. We were taken into a shared room. There was a little boy who had obviously been there for a while. He had a lot of things on the wall and toys, books and signs all over. His mom jumped up to come say hi. As if I was her friendly new neighbor on Jane street. I don't remember if I even talked to her right then. I was to focused on figuring out this place. What was happening and being introduced to a whole new team of doctors and nurses. I was surprised to learn Makenzie would have a nurse in her room at all times. That this nurse was just for her. That this nurse would only be watching Makenzie.
I remember stopping the pull out chair which I knew would be where I would sleep.
Ryan came in a few moments later. Doctors were exchanging information. Makenzie was doing a little better. Everyone was surrounding her. Another doctor came over to us and asked if we could step out for a bit until they got everything in order. She said for us to go get some food and come back in like 20 minutes. She said they wouldn't do anything with Makenzie until we were back but they needed us to step out while they got her settled into this new area.
Apparently when Ryan got the call from me he sped here rather quickly and didn't bother to park in the parking lot. He left his car on a curb out front. So he went and moved his car and brought in the food he had just picked up. We sat down in the cafeteria. Neither of us saying much. We didn't even get a bite before we were paged over the intercom. Ryan and I both jumped up and ditched our food as we rushed back to Makenzies room. I was nervous but Ryan was in sheer panic. He still talks about that moment. He says that was the worst moment out of everything. We rushed back to her room and they explained that they needed to get her intubated right away and we needed to sign the consent forms. They again asked us to step out while they intubated her. This time we just stood outside her door. Another doctor came over. She knelt in front of us and just talked to us. Tried to explain what just happened and what they were going to do now. In the middle of her talking to us someone said we could come back in. We jumped up and rushed to Makenzie. They had given her some medicine-- don't remember what-- but she was out of it. She was kind of awake but not really. I do remember very clearly. Standing next to her bed. Lowering the side rail and placing my hand on her belly.
Ryan and I looked at each other and we both thought the exact same thing without even saying a word. It was the most horrific sight yet the most amazing at the same time. Her belly moving normal. We didn't realize how bad it was until we saw how it should look. We saw her skin hanging from her body. She had lost so much weight that her skin was saggy. When she would breathe before this moment she would suck in her stomach so much it was almost completely compressed. We hadn't seen a belly on her in so long. I stood there and cried. I was angry and happy at the same time. I was angry I didn't do more. I was angry I didn't push harder for her to get help sooner. I was angry I didn't realize how bad it was. and then I was happy she was finally able to get some relief.
That moment continues to make me physically ill. I cant get that image out of my head. Her belly.
I don't remember much from the rest of that day.