My parents had just come back in to town from Arizona the day before. They offered to spend the day with Max at the hospital so that we could try to get caught up at home and repack our bags for another week. After 2 calls from Max's nurse asking when we would be coming in, we became concerned and hurried down to the hospital.
When we arrived, my dad came out and said that Max didn't seem to be doing well, and the nurse practitioner wanted to speak to us right away. It felt like all of the oxygen had been sucked from my body. I didn't think I could move. I knew it. I knew what they were going to tell us.
My parents waited in the hall, and Tyler guided me back to Max's room. We went straight to his side, and whatever little breath I had left in me was now surely gone. I looked at the monitor beside his bed. He wasn't taking an breaths on his own. The machine was completely breathing for him. Tyler and I stole only a moment's painful glance at each other. Max was pale, more pale than I'd ever seen him. Dark blue circles ringed his eyes. He barely blinked at me and only lightly squeezed my finger when I tried to hold his hand. A dark red line show from the shunt incision on his head, curved behind his ear, down his neck and chest, across his abdomen to the incision beside belly button. The infection was back.
His nurse called for the nurse practitioner, and when she returned she drew all the curtains closed around us. I felt like I could barely stand, but I couldn't leave my baby's side. Tyler slumped into the rocking chair, and I could already see the tears falling down his cheeks. I tried to distract myself, asking Max about his day and kissing his hand, but I just bathed him with my tears. His NP came in and greeted us. The physicians in the NICU rotate, and she had been with us Max's first week. He eyes were already red, like she'd been crying. It occurred to me then that it was worse than just his infection coming back. I knew what she was going to say, but I didn't want to hear it. Her eyes met mine before she spoke, and they were filled with tears and apology.
She explained that Max's infection and returned, worse. His shunt was failing. We could have them try to go in and surgically remove it, but the result wouldn't change. This was it. Max, our sweet perfect boy, was dying. She held my hand and rubbed Tyler's arm. She told us how much she had loved getting to care for Max. She told us she was so sorry. Then our social worker Shawnee came. More tears and apologies. She tried not to bombard us with information, but went over some options with us. She told us they would make us special accommodations for our own family room the next day, and get us a place to stay at the Ronald McDonald Family Room that night.
At shift change, in walked our angel Teresa, Max's first and favorite night nurse. She was already crying and hugged us both so tight. Then she informed us that we would not be waiting to move rooms until tomorrow, because she had already cleaned out and secured us a room. She wasted no time getting us packed up and started moving us right then. Bless this woman! We got settled in our private room, and waited for the doctor to come in to make our plan. We wanted Max's death to be as peaceful as possible, and at the time we were ready if possible. We asked for a couple of days time to prepare and gather our families. They to made us and Max as comfortable as possible.
Tyler and I took turns all night holding him. Every couple of hours Teresa and a respiratory therapist would come in and we would trade spots. We didn't sleep.
The first thing we started working on that morning was notifying immediate family and friends about what was happening, and trying to get my brother's family in from CA as soon as possible. They had flights scheduled in January and, when my sister-in-law explained the situation, Delta changed their flights without charge. We had decided to turn off Max's breathing machine the next afternoon.
Primary's, as I have said before, is the most amazing place! The cafeteria brought in a catered cart of Sandwiches, drinks, and dessert for our entire family eat there in the room with us. They accommodated our every need. Our social worker found a photographer from Now I Lay Me Down To Sleep, to come take family pictures for us. Our Rainbow Kids social worker brought the Hospital Chaplain in to pray with us. Aunts, uncles and cousins stopped in throughout the day to visit us and say their goodbyes to Max. We wished so much that more people could have come to see and meet him, but we just couldn't handle the crowd. We were and are so grateful for the understanding of our friends at that time.
As the day progressed, Max looked worse and worse. We kept a little cap on him, because his failing shunt was started to actually push out and leak from the top of his head. His head was already filling up again and he looked so puffy and sick. I could see when I looked at him that he was so tired. But I begged him to just stay and fight just a little longer so he could meet his uncle and aunt. It was then that we decided that we would let him die after my brother would arrive and not wait until the next day...
Post to be continued on 12.23.