Our Hospital Story!

MJ was discharged yesterday afternoon, day 4 after surgery. We stayed in PICU with exceptional care for the first 2 days vs. one because there weren't any beds available. MJ found the noise, sounds and smells almost unbearable. He couldn't wait to leave PICU. Frankly, neither could I. Unfortunately, once he moved to the pediatric floor, our euphoria over his successful 7 hr. surgery with 100% correction by an excellent surgeon, ended abruptly. Our dissatisfaction with the hospital's pediatric floor immediately began. After given written information about the floor, we learned we both couldn't stay overnight with MJ. Despite being told this by his doctor and the Meet Me at Mt. Sinai program. A nurse explains parents can visit their child 24 hours, but only one parent can stay overnight. Whatever that means… MJ says he's confused about this, and so are we. His roommate, a male teen, swears loudly, blasts his tv, girlfriend visits after hours, cell phone constantly rings with a loud rap ringtone, etc. MJ watches Cartoon Network at a personal volume level. Roommate's watching MTV/VH-1 loudly with foul language programming. We're talking serious quality of life issues in a very small, overcrowded semi-private hospital room. The room is so small, there's barely enough room for me, dad and sister to visit together. There wasn't a family lounge or waiting area on the floor, like at PICU.

That night MJ wants his dad to stay with him. I leave at 10:30p.m. and found the entrance/exit to the Children's Hospital is locked at 9pm. Apparently this info is somewhere on the sheet we were given, but we never got beyond 'only one parent can stay overnight.' I'm told to take an elevator to another floor to get to street level from another building, walking through long isolated hallways and corridors. At one point I was really frightened. Finally I saw people and found my way to a street exit. Later, I learn roommate talks loudly on the phone till 3: 00a.m. Dad complains to Hannah, MJ's nurse and nothing is done. Finally, he firmly tells roommate no more calls. Most of the next day, and all evening he behaves the same.

MJ's irritable day 3 due to pain. I'd worried he wouldn't be able to tell us when he hurt. The nurses would insist he had to tell them he was in pain before getting any meds. MJ couldn't use the 0-10 pain analogy. He could point to the pain picture faces, and asked to read the paper so he could read the text underneath each one to be sure he had it right. Once when he was hurting, the nurse said Tell me, how do you feel? As she moved her finger between the smiley face and the flat smile (1-3 picture). MJ grew impatient, picked up her finger moved it to 10 the last picture. He replied No. I do not feel happy. Its the last one... I Feel Pain! Later, he said I can't watch cartoons because my laughter is gone. But he eats/drinks and voids well (no bm yet). No fever, nausea, or hallucinations. We brought him down to the playroom on the 1st floor in a wheelchair. He got depressed when he felt pain and couldn't stay long. They brought up a Nintendo video game for him to play at bedside. Very good programs for children at this hospital. Draining is still a potential issue. We discovered the night of day 2 in PICU his drain tube had pulled out, probably as he got up to walk for PT. MJ begins to perserverate about going home. There's a clock outside his room door. He starts out with "What time is it? We tell him the time. Why is the red stick moving so slowly? That's the second-hand. You are counting seconds, MJ. Seconds go by very slowly. Are we going home tomorrow? Yes. Even if it rains? Yes, even if it rains. Over and over again. He'd tell every doctor/nurse each time they came into his room, I don't want to hurt your feelings. But, I don't want to go home on Monday. I want to go home tomorrow, which is Sunday and recover.

Later that night, Dad leaves, I stay with MJ. Earlier, I'd spoken with one of the Meet Me at Mt. Sinai volunteers about our stay. She said someone would come talk to me. Perhaps I was too emotional speaking with her. We had just seen MJ take his first steps down a long hallway. He is beautiful, so tall and straight. Yet he's understandably weak and unsteady, walking very slow. I cried with mixed emotions as I watched him so vulnerable during these early stages of recovery. We are so blessed. PT reports he's able to walk up the stairs with assistance on both sides. He's too anxious and uncertain right now to walk down any steps. He needs a rolling walker before he can be considered ambulatory and discharged. I rush out leaving sister to stay with MJ. I'm desperate to find a rolling walker, late Sat. afternoon once given the rx for it.

About 10p.m. a head nurse came to his room to clarify with me the issue of both parents spending the night. I told her that no longer is an issue since only one of us had spent the night. The present issue is the roommate's inappropriate behavior he's getting away with. The head nurse said she would try to accommodate us and move us to another room. I said Thank you, we'd deeply appreciate it. Later they came to move MJ to a vacant semi-private room with no curtains at the windows or around the beds. Although the hall lights were bright, he would be discharged the next morning. We were so glad to be out of room 422. The peace and quiet of room 426 was so refreshing, and healing. MJ and me were actually sighing with relief from 3 days of sensory overload. We'd have had a totally different hospital experience in this peaceful, isolated environment. After pain meds he went to sleep. I pulled the chair/bed out, made it up and fell asleep. Later on I woke up to find someone quietly moving within the room. He apologized and said another patient was coming. There was a crib where the next bed had been. Knowing the answer, I asked slowly Is the patient a baby? MJ's nurse walked into the room then, saying an 18-month old baby was coming into the room. I said Hannah, MJ is autistic. He can't tolerate having a baby in this room. Just then MJ woke up, saw the crib and asked intently, Mommy, what is that? Reluctantly I replied, A crib. To our surprise, MJ quickly sat up unassisted, and started yelling, "A baby… a baby…? A crying, screaming, throwing up, which is disgusting…, baby? I cannot take the cursing, the rapping, you can rap without cursing… the beeping, the machines, the crying, the screaming… I just had spine surgery… and I Am In Pain… My satisfaction is now 0 Percent…! If a baby comes into this room, I'm Leaving!!! Hannah the nurse said Okay. We'll move you back to 422, and left the room. The guy who's preparing the crib seems annoyed at us.

Hannah left to get a female resident who comes into the room saying sternly, I understand you have a problem with the patient in 422. So you were moved here. Now you have a problem with the new patient coming in. You will disturb the floor moving back and forth. And, you are denying the baby immediate care. We cannot move you back to 422. You will have to stay here. The head nurse arrives then and pipes in, Patients have a right to do whatever they please on their side of the room. I couldn't believe it! So I respond with, We had to stay in PICU an extra day waiting for a bed. The patient in 422 is a wayward teen allowed to behave inappropriately. I did not ask to be moved. You can be sure the parents of this baby will complain about having this autistic child for a roommate. Then you will have two unhappy patients and two sets of unhappy parents. Please be sure to tell the baby's parents we do not approve of this arrangement. We'll stay here if we must, but this is not a wise decision. To respond to the head nurse, I asked her Are you telling me that only the roommate and this baby can get their needs met, but our son will not? All because you fail to reprimand an out-of-control pediatric patient? The head nurse turns and leaves. The doctor now appears doubtful about her decision. I said, My son has autism. One of his behavioral triggers is a crying baby. You may as well shine a fluorescent strobe light in his eyes and blare a siren or horn continuously in his ears. Just be prepared for a big reaction. Upon hearing the word baby again, MJ behaved in a way I'd never seen before. Rocking from side to side, repeating loudly Not a baby..., a baby… a baby…!

Needless to say, we were moved back to 422, which was dark and quiet. MJ whispers, so not to disturb his roommate, Mommy are you mad at me? I said No. I'm proud of you MJ. You told everyone in the room exactly how you feel, and what you need and want to help you recover. He smiled, gave me a high five and went to sleep. A personal care aide with a no-nonsense attitude finally put an end to roommate's late night shenanigans. He started up again when he woke up to take a phone call and realized we were back. BTW, when I pulled out the chair/bed to go back to sleep, I discovered the bed blocked the room door preventing it from opening. I had to sit up all night in a straight back chair/bed. Just like the parents who are allowed to visit with their child 24 hours a day. I'm happy to say the rest of our stay was uneventful. Boy, are we glad to be home!