A floor nurse explains that while parents may visit their child 24-hours, only one parent may sleep overnight at bedside. Whatever that means… MJ says that he's confused about this, and frankly so are we.
The pediatric floor nurses insist he must tell them he's in pain first before he can get any medication. MJ says, "I am making a complaint against this hospital!" He cannot use a verbal 0 - 10 comparison to express his level of pain. I ask his nurse to use the Universal Pain Assessment Tool instead. She goes to get one and returns. MJ points to a picture face to show how much pain he's in. He even asks to read the chart so that he can read the text for each one to be sure he has it right.
No longer on Morphine and Valium injections, his pain is now managed with Percocet and Valium given orally about every three hours. Before his Nurse, Hannah, will give him a Percocet, she says "Tell me how you feel?" as she points her finger along the first three pictures, between a smiley face and a flat smile. Annoyed, MJ lifts her finger up and moves it to the face that means the worst pain possible, which is last on the chart. "No. I do not feel happy. It's the last one... I feel pain!"
Getting MJ to be comfortable in bed is a real challenge. One pillow underneath him may not be enough, and three pillows may be too many. His dad, Marlon, and the nurses, use a "log roll" method to help turn him over, change positions, and to get in and out of bed. I don't know yet how to help him log roll with a pillow between his knees, roll onto his side, keeping his shoulders and hips together as a unit as he rolls over.
To make matters worse, his Roommate is about age 14, talks out loud or raps to himself and curses quite often. His TV blares morning, noon, and night. His only frequent visitor is a girl who visits him long after visiting hours are over. You can hear them kissing and making out. His cell phone constantly rings with a loud rap song ring tone.
When we get MJ into bed and settle down into his side of the room, Marlon attempts to introduce our family. But Roommate rudely interrupts him, "Could you close my curtain? Close my curtain."
Later that evening, MJ offers him a Dunkin' Donut. Roommate doesn't answer and yanks his curtain closed around his bed. Whenever we turn an overhead light for MJ's bed on or off, he complains. The first night in P-4, Roommate asks his nurse to tell us to turn this light off. He doesn't seem to realize each bed has its own lighting to meet that patient's personal needs.
MJ has Cartoon Network or Animal Planet on his TV at a personal volume level. Roommate watches BET, MTV, and VH-1 with adult language programming. He often channel hops between them. He likes to watch a new video for Amusement Park by 50 Cent. He likes to rap one particular phrase of the song, "You ain't gotta take your panties off, just pull 'em to the side. If you wanna ride on my roller coaster baby, c'mon and ride," out of the blue whenever he seems to think about it.
We have some serious quality of life issues in this small, overcrowded semi-private room. Was it once a private isolation room? The room is so small. There's hardly enough floor space for me, Marlon and Crystal to visit MJ together. For this reason he had no other visitors. And there isn't a family lounge and waiting area on pediatric floors, like at Intensive Care.
Ever since MJ woke up after surgery on the drug Morphine, he is different. There's an incredible increase in his receptive and expressive language. His speech is clear as a bell and easy to understand. His sentences are longer, and he's interested in everything that's happening to him and understands what is said and going on around him. MJ speaks as if he doesn't have autism. We are able to have our first meaningful conversations with our 14-year-old son and loving it. Crystal is amazed at what her brother shares with her. What a miracle!
MJ is still repetitive with some of his questions and concerns though. "How many bricks are on my back?" he wants to know, whenever he's in pain. "What will my back scar look like? Will my girl think I'm a Frankenstein if she sees it?" He has a crush on a quietly shy, pretty girl in his class. "When I go back to school, I am going to tell my girl; in the hospital my Roommate doesn't care about people." He wants to talk to us constantly unless he's sleeping, including through the night.
The first night on P-4, MJ wants his dad to stay with him. I leave his room at 10:30 p.m. and find the entrance and exit to the Children's Hospital, which is locked at 9 p.m. Apparently this bit of news is somewhere on the welcome sheet. But we never got beyond "one parent may sleep overnight at the bedside." The security guard is talking on the phone but tells me to take an elevator up one floor and walk through another building to get to street level. I must walk through several long isolated hallways. At one point, I am really scared. Finally, I see people and find my way to a street exit. I cross the street and go in the hospital's guest residence up to suite 22 on the second floor.
When I arrive back at the hospital early the morning of day four after surgery, MJ is propped up in bed talking to his dad. Marlon says that Roommate laughs and talks on his cell phone until after 3:00 a.m. Although he complains to Hannah, MJ's nurse, nothing is said or done about it. Finally, Marlon says that he firmly tells Roommate no more phone calls. Most of the next day and all evening, he behaves the same way.
"I can't watch cartoons anymore because my laughter is gone," MJ reveals sadly. But he eats drinks and voids well. He is recovering nicely. No fever, nausea, or hallucinations yet from the Percocet, which is a narcotic. We are still amazed by his remarkable improvements in speech.
During the day, a child specialist stops by and invites MJ to visit a game room called "The Zone," on the first floor of the hospital. A wheelchair is bought up for him. Getting out of bed and into a chair is painful for him. A volunteer and I bring MJ down for a visit. The Zone has lots of toys and fun activities for kids of all ages. The inner walls are large geometric shapes painted in bright bold colors. Roommate is brought down to The Zone too. His wheelchair is put next to MJ's chair as they sign in. MJ says hello to him. Roommate rolls his eyes, turns his head, and doesn't speak back.
MJ seems to be depressed here. He watches fish swim in a beautiful aquarium for a while. Then he tries to shoot pool, except the cue stick is hard to position near the cue ball, sitting in a wheelchair. He winces in pain each time he tries to shoot pool. MJ decides to play a video game instead, but now the pain makes it hard to concentrate. We are able to stay but a few minutes. Another child specialist promises to bring up a Nintendo game for him to play with at bedside.
That afternoon, Crystal and I witness MJ take his first steps after surgery. He is beautiful standing up. He looks so tall. And his back is perfectly straight. Two physical therapists are holding him up. MJ is extremely weak and in a great deal of pain. He walks with them slow and unsteady down a long hallway. Then they head towards an exit door.
"Oh no, they're taking him in the staircase to walk down stairs," I moan to Crystal. There are mixed emotions as I watch him be so vulnerable, learning basic skills all over again during this phase of recovery. I remember that we are truly blessed. His surgery is successful, and he is able to walk. Thank you, God.
The physical therapist reports that MJ "walks all over the place." She says, "He is able to walk up the stairs with assistance on both sides. But he's too anxious and uncertain right now to walk down any steps. He needs a rolling walker to walk before he is considered ambulatory, and discharged tomorrow." She returns to the room later to give me a written prescription for it. I rush out of the room leaving his sister to stay with MJ. I'm desperate to find a rolling walker, on a late Saturday afternoon.
On the elevator down, I meet a kind woman who takes me by the arm and insists I come into The Zone with her for a parent body massage. She alternates her stay at the hospital with the parents of her teenage granddaughter who is battling leukemia. I also meet a young father who stays around the clock with his little boy who is recovering in isolation from a kidney transplant, now that he's developed an unexplained skin growth on his forehead. I appreciate their advice, "remember you must take care of yourself too," and promise to schedule a time to come back for a massage later. But for now, I need to leave the hospital to find that rolling walker so we can all go home tomorrow.
The last walker for sale is wrapped in clear plastic, against a back wall in a nearby medical supply store. Yes…! It has wheels. After I buy it, I'm off to the hospital to The Zone to schedule a body massage. The child specialist who visited us earlier asks me how things are going. I share with her that we are miserable, and I'm beginning to feel claustrophobic in Room 422. Perhaps I am too emotional speaking with her. She says she will tell her supervisor, and someone will come up and talk to me.
When I get back, MJ begins to perseverate about going home. There's a large round clock with big numbers on the wall outside his room. You can see the clock through the window in his room across from his bed. MJ starts with,
"What time is it?" We tell him the time.
"Why is the red stick moving too slow?"
"That's the second-hand. You're counting seconds, MJ. Seconds go by slowly when you count each one."
"Are we going home tomorrow?"
"Yes, we are."
"Even if it rains?"
"Yes, even if it rains."
Over and over again we have this conversation. He tells every doctor and nurse each time they come 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, his dad leaves to go sleep at the hotel. I stay with MJ overnight. About 10 p.m. a head nurse comes into the room to discuss with me the issue of both parents spending the night on P-4. I tell her that no longer is an issue since only one of us had ever spent the night here. The present issue is the Roommate's inappropriate behavior he is getting away with. The head nurse says she will try to accommodate us and move us to another room. Grateful for the offer, I say "Thank you."
Around 11 p.m. Hannah, the nurse, comes with someone to move MJ to an unoccupied semi-private room down the hall on the opposite side of Room 422. There are no curtains hanging at the large window or either of the hospital beds. The corridor lights are very bright. Anyone who looks can see inside the room. A hospital bed, refrigerator, and furniture are scattered about.
But we are alone and at peace and so glad to be out of Room 422. The peace and quiet of Room 426 is soothing to our consciousness and healing for both of us. MJ and I actually sigh in relief after several days of being overwhelmed with sensory overload. We could have had a totally different hospital experience in this peaceful, isolated environment.
After MJ is given a Percocet for pain he drifts off to sleep. I pull the bedside chair open to become a sleeping cot. Then go down the hall to the linen room for sheets and a pillow to make the bed, and soon I fall asleep.
Later on, I wake up and find a man dressed in hospital scrubs moving quietly about the room. He says, "I'm sorry to wake you, but I need to get the room ready for another patient coming in." The other hospital bed is no longer in the room. In its place is an oval shaped crib with a large lighted dome over it.
Already knowing the answer, I ask him, "Is the patient a baby?" Before he can answer, Hannah walks into the room. She tells me that an 18-month old baby is coming into the room. I need to explain to her why this arrangement simply won't work. "Hannah, MJ is autistic. He can't tolerate having a baby in the same room. We'll need to go back to Room 422."
Just then MJ wakes up. He sees other people in the room, and then notices the crib. He asks me intently, "Mommy, what is that?"
Reluctantly, I reply, "A crib."
All of a sudden MJ struggles to sit up by himself, and he starts to shout, "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 with this hospital is now zero percent! If a baby comes in here, I'm leaving!!!"
Hannah the nurse says quietly, "Okay. We'll move you back to 422," and she leaves the room. The guy preparing the room looks at me and MJ as if he's annoyed at us and begins to hang some curtains up at the window.
Hannah had left to go get a doctor, a female resident. The doctor enters the room and says to me 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 who spoke with me earlier also comes into the room. Reminding me of a child butting into a school yard squabble, says "That's right! And patients have a right to do whatever they please on their side of the room."
I can't believe what I'm hearing, but I try to remain calm and say to the doctor, "Our son had to stay in Intensive Care an extra day waiting for a bed. The patient in 422 is a badly behaved teenager, who is allowed to continue to behave inappropriately. I did not ask anyone to move my son. You can be sure the parents of this baby will certainly complain about having this autistic child for a Roommate. Then you will have two unhappy patients and two sets of unhappy parents. And 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."
Speaking directly to the head nurse, I ask, "Are you telling me that only the Roommate and the baby can get their needs met, but my son will not because the hospital staff refuses to reprimand an out-of-control pediatric patient?"
The head nurse turns abruptly and leaves the room without giving an answer. Now the doctor appears to be doubtful about her decision. I appeal to her, "My son has autism. One of his behavioral triggers is a crying baby. You may as well shine a fluorescent or strobe light into his eyes and blast a siren or horn continuously into his ears. Just be prepared for a big reaction."
Hearing the word baby again, MJ behaves in a way I've never seen him before. Sitting up, holding on to the bed rails, he rocks his body from side to side and repeats at the top of his voice, "Not a baby..., a baby..., a baby...!
Needless to say, we are immediately moved back to Room 422, which surprisingly, is dark and quiet. A few minutes after getting a much needed dose of pain medication and Valium, MJ whispers so not to disturb his Roommate. "Mommy, are you mad at me?"
"No. I'm proud of you MJ. You told everyone in the room exactly how you feel, and what it is you need to help you recover."
"Are we going home tomorrow?"
"Yes, we are."
"Even if it rains?"
"Yes, even if it rains."
He smiles, lifts his hand to give me a high five and peacefully falls asleep.
© Copyright 2007-2009 – Wanda Brown. All Rights Reserved
The end of article.
Scoliosis and Autism ResourcesA special thank you to the forum members at www.SpineKids.com for their support, information and prayers.
For information on scoliosis contact the National Scoliosis Foundation at: 1-800-NSF-MYBACK (673-6922) or visit their website at: www.scoliosis.org.
New Scoliosis Screening Video for Students Geared to help children being screened for scoliosis the first-time learn the how's and why's of early detection as they prepare for a positive screening experience.
New Scoliosis Media & Community Guide is a helpful booklet for healthcare providers and patient support groups to help you communicate the scoliosis story to your news media and local community in an accurate and compelling way. This comprehensive guide has been medically reviewed for accuracy and is endorsed by the Scoliosis Research Society.
Visit www.child-autism-parent-cafe.com for practical ways to help, plan and manage daily living with autism.