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!

Surgery is successful "100% correction"

MJ's 7 hour surgery on 6/20 is successful with 100% correction. His thoracic curve was in the high 50s, progressing further with right shoulder higher than left and rib hump. The compensatory curve was in the 20s. The treatment plan originally was T4-L2. Dr. Roye said his thoracic curve was so flexible and easy to correct the compensatory curve straightened perfectly so decided to fuse at L1 vs. L2. The waiting was hard but not as bad as anticipated. MJ's self-portrait of him defeating scoliosis worked magic. On the way up to OR there was MJ holding his drawing and another surgical patient holding a cartoon both related to their surgeries. Just as they were about to go into OR the anesthesiologist and Dr. Roye had a brief discussion about giving Procrit immediately before surgery. In this case it was a good thing to do. MJ did not need any blood transfusions during or after surgery.

Thanks to you all, I was prepared! Unlike his dad and sister, I expected to see him with facial swelling. MJ went immediately from OR to PICU. When we arrived he was whispering to himself about his predicament, knocking himself on the head. And he was so glad to see us. Especially when he learned he had indeed defeated scoliosis. Pain management is going much better than anticipated. Dr. Roye told us he shot a big dose of medicine directly into his spinal cord so MJ wouldn't wake up in pain. Once in PICU the doctor there did not place him on a morphine Patient Controlled Analgesic pump because it would be too much medicine too soon. He decided to watch and see if PCA was needed. As it turned out there were times the night of surgery and yesterday, where MJ said he felt no pain at all. At other times he would ask for medicine. He threw up a couple of times the first night, but no itching. He was very much awake afterwards, getting 2mg morphine injections about every 3 1/2 hours or so. He'd ask everyone's name and what they were doing to him. Yesterday and today is more difficult for him. MJ is understandably quite irritable. PT came to get him up on day 2. He was not happy, saying 'I'm going to make a complaint against this hospital!' And, later... 'this hospital is a death trap -- with nurses!' We're so proud of his emerging self-advocacy skills. LOL Our picky eater hadn't eaten in 2 days. He let us know 'I'm in pain and I'm hungry!' By dinner time on day 2 he had worked his way up from liquids to being able to eat some of everything on the tray.

MJ was discharged out of PICU and ready to go up to the Pediatric floor yesterday but no beds are available. We're still waiting. Hopefully today. PICU is very intense, putting the average person into sensory overload. He developed a low grade fever at 100.9 on day 2, which broke last night. Dad and PICU nurse discovered his drain had fallen out sometime yesterday. Probably when he'd first gotten out of bed for physical therapy. The catheter was removed this morning. He'll start oral meds, Percocet and valium this afternoon. Once he's been on them for 12-24 hours we're told we can go home. PT will come again before we leave to get him to walk and go up and down stairs. MJ sat up for 40 minutes yesterday and again today. He needed a lot of help due to weakness. I'll write again soon. I only leave him for short breaks and meals. We're feeling so good to be on the 'other side' of surgery.

Day Before Surgery

After months of preparation, most arrangements have fallen into place. We haven't heard back from Dept. of Social Services about the personal care aide yet. I'll give them a call after the surgery.

MJ is getting more nervous but overall he has a positive attitude and is a true champion. I'll write more later. We were told there's Internet access at the hospital guest residence. Today I learned there are only two cards, both unavailable. Hopefully, I can post from my PBA. I plan to post again as soon after surgery as possible.

Meet Me at Mt. Sinai

Meet Me at Mt. Sinai, a program developed based on research to prepare children and families having surgery, is amazing. At first, MJ wouldn't look at the PowerPoint slides being displayed, and held his ears because he 'didn't want to talk about it.' But the presenter, Deanna gently pressed on. There were slides on a large screen of a black child and his mother wearing hospital pajamas sitting in the surgical waiting area. MJ looked at me and said 'that's me and you'. From there he was a willing and often funny participant, cracking jokes.

MJ was shown many real items he'll see beginning at admission. Stethoscopes, heart monitoring pads, parents' and kids' hospital pajamas, and non-skid socks. Other times there were real life pictures of a wheelchair, the operating room, and recovery room. Later we were given a tour of the Pediatric Intensive Care Unit (PICU), children's ward, semi-private room and the surgical admissions area.

MJ grew more relaxed over the course of the program and hospital tour. He no longer seemed fearful of what will happen on the 20th.

From my viewpoint, after visiting PICU it hit me just how intense and stressful this experience will be for all of us. On the 3rd floor PICU, a curtain is all that separates most patients. The sights, sounds and odors are apparent as soon as you walk through the doors. MJ was shown how to use the Patient Controlled Analgesic button (PCA) using a 'call' (nurse) button. A nurse told us only one parent at a time may visit PICU. MJ was having such a good time and was excited. His experience was a very positive one.

However, I felt like I am betraying him because he doesn't know how difficult his surgery and long recovery process will be. I grew more depressed as we left to go home. Once at home, in the privacy of my bedroom I cried some, then climbed into bed early to go to sleep. In a quiet moment before falling asleep, a thought came to me. I thought about havaing discomfort and pain – hard pain. My point of reference is labor and childbirth, and gall bladder attacks I had as a teen.

Remembering our daughter Renee during labor, I could see how much pain she was in for several hours. As her labor coach, I also recall she felt relief once given an epidural which diminished when it was time to push. Yes, I was on high alert and often felt quite tense throughout her labor. But we all got through it! And afterwards there was the birth of our beautiful grandson, Isiah. Initially, Renee had no idea what her labor and birth experience would be like. Yet she was still excited over the outcome, her new baby.

Putting MJ's surgery and recovery into perspective, I know MJ will have major discomfort and pain. He will get relief from the pain medication. As his mother, I expect to be on high alert and under a good deal of stress. But we will all get through it! And afterwards the pay-off in his case, will hopefully be a new back with beautiful posture. This morning I woke up feeling excited like MJ was last night.

LaFuma Recliner

The LaFuma recliner I ordered after viewing a parent recommendation on the NSF forum arrived last week. We finally opened the box. It looks like a dressed up outdoor patio lounge chair. When you sit in it you quickly understand why its recommended. Very comfortable, lightweight, folds easily, and attractive. So glad we didn't get the lift chair.

Woke up this morning feeling nervous and jittery. My understanding is many children with long incisions post-op are unable to raise their arms for awhile. Today I plan on adapting new white undershirts into pajama tops and button down t-shirts vs. having to put them on over your head.

Countdown to June 20th!

Since the month of June arrived, MJ grows more nervous. He's talking about his fears and concerns with Matt, his counselor at school. I'm learning to listen whenever he talks to me about it. When I bring the subject up or try to clarify something, he covers his ears saying "That's too much information! I don't want to talk about it!"

I find myself split during the day from feeling moments of sheer panic, or become irritable and restless. I'm sleeping less than usual getting three or four solid hours. Whenever I speak to his surgeon I feel better. We are completely confident in him which helps a great deal. Can't say enough good things about the folks at the NSF forums and SpineKids. Spending a lot of time of reading the posts there too.

On June 11th he gets blood work before having the 3rd shot out of four Procrit series. The first shot he handled well. The second one hurt him. MJ said the medicine burns going in his arm. He said "my veins are burning!" His dad did a good job getting him to move his arm and work it to get the meds moving. MJ hasn't had a reaction to Procrit so far.

I bought the book Prepare for Surgery, Heal Fasterand Peggy Huddleston's Relaxation/Healing CD plus Instructional CDfor him. This book is not for children so I've been reading it. Hopefully the cd will be helpful while MJ is in the operating room.

On June 12th we take him for pre-op blood work. Marlon and Crystal are donating blood. Then we attend the Meet Me At Mount Sinai program. I purchased the paper, Preparing children and families for surgery: Mount Sinai's multidisciplinary perspective.(surbeys): An article from: Pediatric Nursing After reading it I'm really excited about attending this program.

Durable Medical Equipment

Yesterday we submitted several written prescriptions for durable medical equipment to a provider. A hospital bed rental, hospital bed tray, raised toilet seat with arms, shower seat, walker, lift chair and portable male urinal. Some items are rentals and others are purchases. We'll see what's covered and what's not...

Good news! Jamie at Medi-Fair called this morning to let us know all the durable medical equipment except the lift chair was approved. The hospital bed is an electric twin size bed, 80" long, which comes with a mattress cover. Standard twin size sheets will fit the bed. Our deductible is $100, plus $2.79 for a portable male urinal. A total of $102.79 is due at delivery. What a relief!

They'll come to set up MJ's room before we leave for the hospital. Some providers told us they must wait until MJ is discharged before setting up. Since we'll be out-of-town it's good to know MJ will have what he needs all ready when he gets home.

A member on the National Scoliosis Foundation forum suggests purchasing a LaFuma recliner, a 'doctor recommended' zero gravity chair, which relieves pressure on the spine. LaFuma recliners are portable, indoor/outdoor and half the price of a lift or hip chair. We ordered one. The chair should be here soon.

Day filled with many blessings

Every day is a blessed day, and today is filled with many blessings.

Last week MJ's service coordinator applied for financial assistance to some community organizations to help us pay the $1,750 to stay at the hospital's guest residence for a week. A non-profit agency awarded us $500.00 in a check made out to the hotel.

Yesterday I called our local chapter of the Autism Society of America and spoke to Gonyea, mother of an adult child with autism. She called this morning to tell us we are awarded $500.00 to help pay for our expenses.

Today I finished the train quilt MJ will take along to the hospital. He helped me pick out the train and railroad tracks fabric.

Last night we received a bill for $6,448.00 for the MRI. This amount must be a mistake since the MRI was pre-approved by our health insurance company. The appointment for the MRI was made by Wendy, the surgeon's administrative assistant. I called her, faxed the bill to her, and later faxed it directly to radiology billing department. I just got a call from Jessica. She said they would take care of it. Wow!

I am so grateful for these many blessings. God is good!

Researchers Discover First Gene Associated With Idiopathic Scoliosis

Researchers at Texas Scottish Rite Hospital for Children, one of the nation's leading pediatric centers for research and the treatment of orthopaedic conditions, have identified the first gene -- CHD7 -- associated with idiopathic scoliosis (I.S.), the most common spinal deformity in children. With no known cause or cure, idiopathic scoliosis poses a significant health burden to the pediatric population. The condition affects approximately two to three percent of school age children in the U.S. and costs an estimated several billion dollars in surgical treatment each year.

Click here for full article

MRI Review

On Tuesday, the surgeon told us the good news... no pathologies, other than idiopathic scoliosis were found. Bending films show MJ to be "extremely flexible." His doctor did a fine job describing his condition. He told MJ he would need surgery in order to stop the curve from progressing further. After he told him MJ said, "what about those needles?" And the doctor said, "what needles?" MJ said "you know, those long, sharp, pointy things...!" He was talking about needing four weekly shots of Procrit to help build up his blood to prepare for surgery. MJ has such a good sense of humor.

All in all, we believe MJ is taking the news very well.

The surgery will be a fusion with instrumentation from T-4 to L-2, perhaps shorter.

National Scoliosis Foundation Conference on Spinal Deformities

For the first time in the U.S.! The National Scoliosis Foundation is hosting its 4th International Conference on Conservative Management of Spinal Deformities on May 13-16, 2007 at Northeastern University in Boston. The conference is a multi day event offering something for everyone interested in the topic of conservative care. This is an unique opportunity to meet and talk with scoliosis experts from the Society on Scoliosis Orthopedic and Rehabilitation Treatment; Scoliosis Research Society; The International Research Society for Spinal Deformities and many more. Click here for more information

The MRI... A Prelude to Surgery

Well, the MRI is behind us now... MJ has come so far from needing "First ____, then ___" and "wait" picture icons to help him learn patience. He waited patiently all day from 7:00 a.m. to 5:00 p.m. with nothing to eat or drink, and not one complaint. MJ grew anxious right before the test began, saying negative things like "I'd run and hide in the back of the car, but I'm not invisible enough" and "Are you going to leave me here to die?" Once he got inside the test site and saw the large MRI scanner, said "Oh, I get it now. They need pictures of my spine," and "I'm going to be fine. I'm invincible!" He's shown us time and again his ability to adapt with humor and courage. In the recovery room, MJ told us "When I woke up I wanted to complement the doctor [anesthesiologist] but I was too weak to talk." Later on when the doctor came into the recovery room, MJ told him "I want to be just like you." The doctor was visibly touched by the complement. This day will definitely help prepare MJ for surgery. MRI day felt a bit like dress rehearsal. The hospital staff provided excellent care. A nurse from the recovery room called this morning to ask how MJ is doing. Little things mean a lot...

A reassuring call from a social worker…

Janine, a social worker from the hospital called this morning. She returned my call about a program designed to introduce young children and teenage patients to the hospital, operating room, and recovery room. Janine has really helped ease some of my fears. Particularly, fear that the hospital staff may be unprepared or untrained to handle an autistic child. She told me about their experienced Child Life Specialists who are there to help all of its pediatric patients, including those with developmental disabilities. Janine assured me the social workers, child life specialists, teacher, physical therapists, and medical teams in ICU and the pediatric ward, would do their best to access and see that MJ's needs are met while in the hospital, at discharge, and at home. What a blessing… and a relief!

Need for an MRI

Due to the rapid progression of the curve, an MRI of the spine can rule out any other problems. After the doctor reviews it, we'll know more details about the surgery. The MRI is set for Tuesday. This too will not be a simple routine procedure. MJ will need to be sedated. The MRI will be done at the hospital where the surgery is performed.

We're depending on this first-rate hospital and staff to continue to guide and impress us in treating MJ with professionalism, dignity and respect, all the way through the healing process.

Our Story…

Hi. I live in the northeast with my family of six. Our youngest child and only son MJ is 14-years-old and has autism.

Our son and family is facing what may be the hardest physical and emotional challenge we've ever had to deal with. During an annual exam in June 2006, we learned MJ has developed a condition of the spine called scoliosis.

Scoliosis is an abnormal curvature of the spine. Instead of going from top to bottom in a relatively straight line, a spine with scoliosis may appear to have a side-to-side “S-shaped” or “C-shaped” curve. Mild degrees of scoliosis won’t cause you any problems. However, more severe cases of scoliosis can result in pain, weakness, and low self-esteem because of obvious cosmetic deformity. Very severe scoliosis may cause heart and lung problems if those organs are overly cramped in an abnormally shaped chest cavity. Source: Scoliosis by Rosalyn Carson-DeWitt, MD

We took MJ to Helen Hayes Hospital for a consulation. A pediatric orthopaedic physician who came in to treat patients each month told us after an exam and x-ray, that he had a 24 degree curve. In six months we were to bring him back for a follow-up visit. Another "wait and see" approach…

Six months later we are surprised and disappointed to find the scoliosis has rapidly progressed from 24 to 48 degrees. The curve is now causing MJ discomfort. He often leans to one side, has more unbalanced coordination, and it's quite noticeable without bending over.

A second opinion from a reputable doctor at a reputable hospital, recommends MJ have spinal surgery to prevent further progression of the scoliosis. This major surgery is scheduled to happen in June 2007.

The Good, the Bad, and the Ugly…

I'll be sharing my thoughts and experiences leading up to the day of scoliosis surgery throughout MJ's recovery period. The good, the bad, and the ugly.

There are so many things I'm worried about… How will MJ take the news of his upcoming surgery, how much pain will he be in, what will it be like to see him in an Intensive Care Unit, how will autism affect his recovery, what will it be like to have a visiting nurse, teacher and therapists inside our home everyday… to name a few.

I'm also worried about any potential risk for disparities in my son's health care, and realize how hard it can be for families to get services, and put a support system into place in a short time.