We were eventually taken up to the third floor, the neurology floor. Our doctor was Dr. Scott Elton. He was a shortish, roundish guy, very personable and very knowledgeable. He looked at the CT Scan sent from KDMC and said that it was medulloblastoma, most likely. An MRI would provide more detail including whether or not the tumor was attached to the brain stem. If it was, there would be serious issues. I don't remember a lot of detail about those first days. I remember telling people that it was surreal, as if we were walking around in a dream that was too horrible to be real. This was New Year's Day. The hospital was recognizing the holiday. Angel BK needed an MRI to determine the exact details about his tumor but he couldn't get one that day. There was no radiologist available to administer the scan. That bothered me. My baby needed this. New Year's is barely a holiday. Someone should have come in and performed this test on my baby.
We had tons of family in the hospital those first few days. Everyone was as shocked as we were, of course. They came to check on us, see what we needed, see our baby. He was restricted to his floor. The tumor in his brain was blocking the flow of spinal fluid from his brain. The built-up fluid was what caused his vomiting and headaches. They were concerned that the increased pressure on his brain could cause some sort of problem so they wanted him on the floor at all times. Just in case. I don't even remember all of the people who came to the hospital or all of the phone calls we got. I know there were tons and tons of both.
On the next day, we finally got our MRI. Dr. Elton called us back into a little room across the hall to show it to us. I don't actually recall him going for that test, I don't know if I went or if it was just hubby. Anyway, Dr. Elton called us back. He had two nurse practitioners with him. I remember that they, at least one of them, was wearing an Ohio State jersey. He showed us pictures of the tumor. It was a small circle on the computer screen with a finger like appendage protruding from on side. It totaled about 13 cm. in size, including that appendage. He couldn't tell whether it was attached to Angel BK's brain stem or just pressing against it. He would determine that during surgery, which would take place on January 4.
January 4 came. The hardest day of my life up until that point. They came and took our baby down to pre-op early, super early. I think they told us the surgery would take 5 hours. We stood in pre-op with our baby in a metal crib. He wanted us, especially anytime the pre-op staff approached him. I believe we took turns sitting in a rocking chair with him. We were in there for quite a while. We were told what would happen. We would go to the waiting room and check in, when they anesthetized him and surgery had started we would get a call about it from the surgery staff. When they'd gotten into his brain, we would get an update. Etc., etc, etc. Then they came to take by baby from me. I believe one of the nurses carried him away. He was screaming for me. We were told to go to the waiting room, in the opposite direction of where they were taking him. He cried for me and I cried for him. We popped through the doors into the waiting room where at least 3 dozen of our family members were waiting. I saw them looking at us and I started bawling. We were ushered into a private room where we were consoled and allowed to collect ourselves. Then we returned to the public waiting room where we would spend the next 6 hours.
Just a short while into our wait, we got a call from the operating room. The nurse told me that he'd cried for me right up until they'd put him under. As if that was something I wanted to know. It didn't make things easier.
When the surgery was over, the doctor came to speak to us. We met with him in a private room. He told us about the tumor. It had been pressed against his brain stem but wasn't attached. Good news. He'd gotten all of the actual tumor matter, at least it appeared that way when he examined the cavity. They'd left some chemotherapy drugs inside the tumor cavity. There was some lesions on the outside of the brains, something not even solid enough to remove, something that would have had to be scraped off it it was removed. He would be in PICU for a couple of days. They would take him there when they'd finished in post-op.
We finally got up to PICU to see our baby. There was a huge incision down the back of his scalp into his neck, covered loosely with a bandage. He was in this little curtained cubicle. There was no privacy. When we went into PICU we passed a room where a little girl lay on a bed covered with blood. If that doesn't give you a feeling for that floor nothing will. Our baby laid in a metal crib, blessedly asleep. It broke my heart to see him like that. I cried. His daddy cried. I think everyone who saw him cried. He was so helpless and vulnerable.
At one point during our time in PICU, the tv was on. We'd been watching the coverage of the Sago mining disaster. A St. Jude's commercial came on. A mommy said that they never thought it could happen to their child. Y'all know the commercials. We ignore them as much as possible because they're sad and we don't want to think about it. I watched that commercial and looked at hubby. "That's us," I said, pointing to the tv. "We're those people."
No comments:
Post a Comment