Main content

Alert message

Spring 2019

By Teresa Dafft, Deafblind, Family Leadership Participant, The Woodlands

Abstract: One parent shares her pointers for preparing for her child’s hospital stay.

Keywords: Family, blind, deafblind leadership, hospital tips


Our son, Travis, had a pretty rough start with life. Emergency C-section, emergency resuscitation, emergency life flight to Houston — Emergency, Emergency, Emergency. During those times, we didn’t have time to stop, think and ask questions. It just happened so fast.

That was 14 years ago, we have been fortunate that Travis has not been in the hospital since he was two. Not because he has been in perfect health but because he has a pediatrician who believes that under certain situations a child will do better at home with nursing care as opposed to lying in a strange bed in a room that actually has more germs than your home!

Then the year 2004 came rolling around and a new journey began. In January, Travis had to have bilateral hamstring lengthening. It was a fairly easy operation, which was performed in day surgery. Afterwards, he was in long leg casts for two weeks before we were able to resume our regular routine. For us, our regular routine meant a summer of fun at grandma’s farm and a growth spurt!

Travis has always been monitored for scoliosis because he is in a wheelchair and his muscles don’t work correctly. Well, this growth spurt caused his curve to go from 30 degrees to 74 degrees in 3 months. It was causing his pelvis to shift, making it harder for him to sit.

Waiting in the doctor’s office to find out what needed to be done to fix the problem, I remember thinking that perhaps the doctor would increase the support of the brace or maybe have him wear it at night. When we met with the doctor, he shared with us what was really going on. From there, everything became a blur “surgery” “lose ability to sit” “50/50 chance” “ventilator” “ICU” “12 hour surgery.” Words that can stop you in your tracks. The only difference this time was that the surgery was not an emergency and we could take the time to stop, think and ask our questions.

Travis came through his back surgeries with flying colors and now almost 6 months postoperative he is doing great. We know that a lot of parents will be facing the situation of surgeries and hospital stays, and as result of our experience we learned a few pointers that we would like to share with other families.

  • If the surgeon is different from your regular physician, don’t hesitate to inquire about him. Ask your regular physicians, other parents and even hospital caseworkers.
  • Meet with the surgeon more than once. We met with Dr. Hanson to discuss the surgery. Then two weeks later we met again with all of our questions written down for him to answer.
  • Write down all your questions. NO QUESTION IS A DUMB QUESTION WHEN IT COMES TO YOUR CHILD’S HEALTH.
  • Have the surgeon explain exactly what he is going to do step-by-step. Have him explain the possible outcomes–both the good and the bad.
  • Ask which hospital your surgeon prefers. Many have privileges at several hospitals.
  • Ask which anesthesiologists they like to work with and be sure to get a written list. Doctor’s do not get to choose their anesthesiologist but parents can! However, YOU MUST REQUEST IT DURING THE PRE-ADMISSION BEFORE SURGERY. Travis was going to be on the table 12-14 hours. We wanted someone who our surgeon was comfortable working with.
  • Ask if blood will be needed during the surgery. Call the blood bank yourself because the doctors do not know how the blood donation system works.
  • Call the hospital. Most will give you a tour and arrange for you to talk with the child life specialist. Explain your child’s needs. Travis was going to be in the hospital awhile so we asked about switch toys and other items he could use. We found out that at Texas Children’s Hospital people could e-mail Travis every day and the hospital staff would deliver his messages to him. We sent the address out in a school memo and he got lots of email.
  • Make a small laminated chart or book that explains how your child communicates. When we left him at the Operating Room doors, we knew that the nurse could at least communicate with him because of his book.Make a sign for the hospital room that gives people a quick reminder of how to interact with your child. We made a small sign to put on his door that said,

    ***Please do not touch Travis until you have introduced yourself to him, then gently touch him. Explain what you are going to do BEFORE you do it***

    I UNDERSTAND MORE THAN YOU THINK I DO – Travis

  • Keep a scrapbook near your child to help people learn more about your child than just the medical stuff he or she is going through. We did this by placing ~his special book near his bed that has lots of pictures of Travis and all the cool things he does. This really helped to show the medical personnel that Travis was not a syndrome, but a typical teenager who did things a little differently.
  • If your child has been getting his medication on a regular schedule, make sure you inform the doctor and his nurse so that this schedule will not be interrupted. Travis has been getting his seizure meds at 7am, 12:30pm and 6pm for the last 12 years. The standard hospital medication schedule is 9am, 2pm and 9pm. If we kept to this schedule, his seizures would have really been bad.
  • Set up a shift system for the parents. During the surgery both of us were waiting for Travis and we were both there for him in recovery. Then we took shifts: one went home to sleep while the other parent remained at his bedside. This allowed us to not be so fatigued (yes, you are still tired) and cleared headed when doctors came in to talk to you. Have one person act as your information source to those who want to be kept updated on how your child is doing. This way you only have to make one call and you can focus on your child. When you get home from your shift, you can call those you would like to talk to in person. In addition to our family and friends, we made sure we had one person designated at his school and our work to spread the word about Travis.
  • And most importantly, after the surgery and hospital stay is over, drop a note to the hospital to express your appreciation and share what your child’s hospital stay was like. This should include noting anything that went well and (anything) that could have been done differently. In our letter, we especially thanked his anesthesiologist, because she was so good at taking care of our son. She kept him off a ventilator and made his hospital stay 10 days shorter. She also came by the floor to see him and still asks about him through our neurologists.

We hope our experience and the things we learned while Travis was in the hospital will help another family. We know they will certainly come in handy for our family when we face this again this fall when Travis is scheduled for another surgery.