The morning of Brady’s last IVIG started on a bright note. I went in to wake B up, singing my usual “Good morning, Good Mooooorning”. B started giggling. It was such a great start to the day, he had a little cough while he was laughing, and since I had already had a suspicion that he was developing pneumonia I decided that when we got to the hospital I would see if one of the palliative Dr.’s could come have a listen to his chest, and hopefully catch it soon enough to avoid a hospital stay. I also had a feeling that something bad was going to happen that day. We got to IVIG and one of the palliative Dr.’s came to assess B. She decided he needed to be admitted and started on IV antibiotics. We stayed in Medical Day treatment after IVIG was finished until we could be admitted onto Unit 3. Throughout Brady’s IVIG appointment he acted very lethargic, his skin was becoming mottled (which is a lace-like purple discoloration of the skin) I could tell there was something else wrong. The nurse on in medical day was becoming very concerned, she knew he needed to be started on fluids, but there was nothing we could do until he was on the unit. As we were discussing his condition, Brady started throwing up, we would get him cleaned up and settled and he would throw up again. He lost control of his bowels. He was in shock. The nurses jumped into action. They called the step team to assess him, which is a respiratory therapist and a nurse from the ICU, they are the ones who decided if a child needs to go into the ICU. They knew B needed fluids, they couldn’t push fluids fast enough through Brady’s port, but they couldn’t get an IV started. All of B’s veins were shutting down. They brought more nurses up from the ICU, one brought a special light to help them find veins to try and access, and you could see the site blow up. The doctor from the ICU came up, the doctors from Unit 3 came over. There were so many people working on Brady. They couldn’t measure his blood pressure. And then the questions started. It was all such a blur, they wanted to take him to the ICU to put in an arterial line so they get his blood pressure figured out. They needed to know if I wanted him to be intubated if needed. As a family we had always agreed on no mechanical intervention, that if it was Brady’s time to go, we had to let him. But this was really happening. I told them I was ok with the arterial line, but that we would discuss intubation when the time came. They whisked B off to the ICU. I gathered all of B’s supplies from IVIG and his wheelchair and was escorted down behind him.

In the ICU it was controlled chaos, so many nurses working on B, each one focused on their specific job. I just stood at the door, watching. The doctor came over to me, and she said “you need to prepare yourself, he might not survive this” I was completely taken back. Tears started rolling down my cheeks. How could this be the end? he was laughing this morning, it was just a regular day, and now B might not survive it? It felt like we were in a movie. The Doctor went back to Brady, they needed her help to get the arterial line in place. A nurse came and put her hand on my back, trying to give me the reassurance that I needed. I had to make some calls, let B’s father know as well as Jordan and my family. Time seemed to be standing still, but really it was flying by. Once they got the arterial line in place, they found that his blood pressure was stable, he was leveling out. He was no longer in immediate danger. Thank goodness. Slowly the nurses started clearing out of his room until there was only 2, cleaning up the packaging from all the supplies they used. B was resting peacefully in his bed. The nurses made sure I had everything I needed, as well as the family that came to make sure B was ok. It was late by the time I was able to get to bed. Still shaken from the events of the day. I went to bed on the small pull out couch in the room, passed out more like it. Completely emotionally exhausted. When I woke the next morning, there was a coffee waiting for me beside my bed. It was from one of the residents that I knew and was working in the ICU that day. Coffee had never tasted so good. I sat on the bed starting at B, still sleeping peacefully. I had to smile. Classic B, never making it easy on anyone. They monitored B for a few more hours in the ICU, but he had stabilized, and we all agreed that unit 3 could take over care.

Up to the 3rd floor we went and settled into a room we had stayed into before. The next few days were uneventful. B was receiving IV antibiotics for his pneumonia. B’s port had stopped working from all the use, so they had just been using the IV site they had been able to start in the ICU. On the day we were going to be sent home I was feeling vey uneasy, I had never been scared to take B home before, but I was this time. I just felt like the worst wasn’t over yet. One of the palliative doctors came in and we sat down to talk. I told her the port wasn’t working and that I wasn’t comfortable taking him home. She agreed with me. She wanted to keep B on the unit until he was strong enough to go into surgery to get his port replaced because they needed a direct access to his veins. She went over to B, and instantly she was concerned. He was mottled again; He was shutting down again. I hate it when I am right. Back into action the nurses went, the doctor had to start another IV site in his foot, as they had removed the other one when they thought we would be discharged. They started pushing fluids into him as fast as they could. ICU doctors were called again, 10 or more people were surrounding B trying to help in any way they could. The ICU doctors came and said they could take B down to the ICU again, but the only thing they would do in the ICU that they wouldn’t do on the unit was intubate him. Once again, the question came up, and I had to say no. I had to stick to the original plan we had, no mechanical intervention. Its so hard in that situation, to make that decision and say the words out loud. You feel like a monster. It goes against every motherly instinct in your body. The doctors were very understanding. They had seen situations like this before. The ICU doctors left B in the capable hands of the unit 3 doctors and we waited to see what would happen. Just as before B settled down. The fluids did their job again. Clean up began, the room cleared out and B was able to rest comfortably again.

It was clear we weren’t going to go home. The roller coaster of emotions was exhausting. I felt everything and nothing all at the same time. Had Brady’s body had enough? Was this his way of letting me know? I thought about it all night. The next day I sat down with the Unit 3 doctor, one of the residents and one of the palliative doctors. It took every ounce of strength for me to tell them how I was feeling. To tell them that as badly as I want to be selfish and keep B with me forever, it wasn’t fair to him. It wasn’t fair when his body is clearly telling us it was exhausted. It wasn’t fair that he had already gone through so much in his 6 years of life. I told them I thought we should stop treatment. I felt awful saying the words. I felt like a monster again, like the worst mother in the world. I felt like I was giving up on B. The doctors all agreed that B’s body was telling us he had had enough. That these episodes would keep happening. They said that as they are working on him and trying to get the fluids into him, I was pushed to the side, and that I should be the one right beside him holding his had. It was the hardest of many hard conversations I have had in the ACH. The doctors were very supportive and understanding. They gave us the choice of staying in the ACH or moving over to the Rotary Flames House to spend the remainder of B’s life. I chose to go to the Rotary Flames House, and plans were made for us to go over the next day.

After the decision, I couldn’t stop crying. Even with the Doctors agreeing I still felt awful. I didn’t want this to be the end. I would have taken care of B for the rest of my life. But I couldn’t be selfish. Quality over quantity. I didn’t want him to suffer, even if it meant 1 more minute with him. The next morning, I got up early and went to get a coffee from the cafeteria For Jordan and I. I sat and stared out the window. A window I had looked out so many times in the past 2 years. Remembering all the times I had come and sat in this cafeteria with B. Thinking about how many hours I had spent in this hospital. This hospital had been my safe haven. I had never felt uncomfortable here. I enjoyed staying here. The food was good, the staff was amazing, and the beds were decently comfortable. Realizing the coffee was getting cold, I went back up to the unit. I passed the Unit desk and noticed B’s room light was on. I knew something happened. I went in to find Jordan helping B as he threw up. The nurse was already getting the items to clean up. B’s body had rejected his medications. It was all happening so fast. Because of the decision I had made the day before, there was nothing the nurses or doctors could do besides try and help him be comfortable. They gave him morphine through his IV as he couldn’t tolerate anything in his feeding tube. We were transported over to the Rotary Flames house later that morning. Later that afternoon B was surrounded by his parents, grandparents, aunts, uncles and cousins. Everyone wanted to spend some time and say goodbye. B continued to reject all fluids, until they were stopped all together. We were told that B’s kidneys had shut down. We were all preparing for the worst. Later that night, when all the family had gone, I sat beside B holding his hand. It had been such a long day, and I was exhausted. B was already sleeping. I leaned in and gave him a kiss. With tears streaming down my cheeks I told him “its ok if you have to go, you have fought so hard. I am so, so proud of you, and I love you so very much. Good night B” I had to pry myself away from his bedside. Jordan and I slept in the room next to B’s, the door open so I could see into his room. I knew the nurses had B on the camera and if anything happened they would come and get me. I knew that I had to sleep, because B never did anything the easy way and I wasn’t sure what was in store for us.