The third part of our series on “things we’d all rather not think about” is medical hospitalization of a child with autism. To get an insider’s perspective, we turned to Julie Eigsti who wears two hats: health care professional and mom.
theautismblog: Please tell us a little about yourself and your family.
Julie Eigsti: My name is Julie, and I have been a Registered Nurse (RN) for 19 years. I had the privilege of spending 18 of those years working on the medical unit at Seattle Children’s Hospital. Since my son was diagnosed on the mild end of the autism spectrum, I have worked with three children on the spectrum. Before that, I am sad to say, I am not really sure. I have been married for 21 years and have two beautiful children, Elle who is eleven years old and Joel who is six years old.
theautismblog: Can you tell us about some of the children with autism that you have worked with in the hospital? What were some of the reasons they were there and how did staff work with them?
JE: A lot of kids who are admitted to the medical unit are there for respiratory illness; this was true of several of the patients I worked with but there are other reasons as well. Here are some examples:
“Sally”, was a teen significantly affected by autism. She had a severe respiratory virus that was quickly getting worse. Her parents let us know from the start that certain procedures would be difficult for her. They were great advocates and were clear about what would be helpful and not. In partnering with them, we were able to make accommodations to minimize the stress and agitation.
“George”, was also a teen significantly affected by autism. He often came in for bowel obstruction and constipation. This meant IV fluids and sometimes a nasogastric (NG) tube. Keeping the tubes in place was a big challenge with George – we needed something to distract him. The answer was the hospital’s “sensory cart” with all kinds of squishy balls and other manipulatives that help keep kids occupied. George had a hard time with waiting to be discharged. He would reach for the nurse when she entered the room. She seemed concerned that he was trying to hurt her while I thought that he was trying to communicate his frustration to her. This is a common misunderstanding that parents can help medical staff to understand.
“Timmy”, was a verbal five year old with pneumonia. He could not be discharged until he was able to take his antibiotics by mouth. As you can imagine, this was a big challenge. Child Life staff (specialists on the healthcare team who work directly with patients and families to help reduce anxiety and adjust to the hospital experience) helped by creating a visual schedule depicting the medication, his preferred beverage (7 Up), and a toy car. We went over the schedule many times and with practice and patience, he understood that if he took his medication, he would have his favorite drink AND a reward, his favorite toy car. This was a recipe for success!
theautismblog: What are some of the unique challenges parents of kids with autism face when their child is hospitalized?
JE: All parents who have a child hospitalized are faced with challenges, but when you have a child with autism these challenges become immense. There is adjusting to new surroundings, having many unfamiliar people around who need to do examinations, having to stay in bed, having procedures done, such as IV placement, or nasogastric tube placement or x-rays, then having to keep these in place and also taking medications. For parents, this can be nerve-wracking.
theautismblog: Is hospital staff trained in working with kids with autism?
JE: Hospital staff is trained to work with children with special needs. They may not be fully trained in every aspect of autism.
theautismblog: What can a parent expect when their child is hospitalized?
JE: It is hard to write exactly what a parent should expect when their child is admitted because there are so many different scenarios, but first let me say that you should expect to receive exceptional care, as Children’s staff is dedicated to excellent care of its patients and families. I’ll walk you through some of the steps involved in a hospital stay from admission to discharge.
When a child is admitted to the hospital they will go through an admission process. Usually a nursing assistant will take vital signs (temperature, pulse, heart rate, and blood pressure), and will obtain their height and weight. The nurse will then need to take a complete medical history and reason for admission. Seattle Children’s Hospital is a teaching hospital, affiliated with the University of Washington. The Medical Doctors (MDs) are residents who work under a senior resident and an Attending MD. Every morning they make rounds on all the patients to discuss that day’s care and concerns. Parents are encouraged to join in this discussion.
REMEMBER you know your child best and you are your child’s best advocate! Your nurse will also be in attendance and she/he is a good person to discuss any concerns with prior to rounds. There is always a MD available 24/7 for you to talk to, if you have questions or concerns. Always speak with your nurse first and she can page the MD if necessary.
Discharge (checking out of the hospital) requires patience as there are several steps beginning with the MD letting you know your child is ready to go home. The MD then will write orders, the orders which then go to the nurses, who will then complete the rest of the paperwork. If medication is prescribed, it might come from the hospital pharmacy (this can take a long time so ask your nurse how long the wait is) or you may want to fill it at a local pharmacy if you are in a hurry. Your nurse will go over discharge information with you and have you sign the papers. Then you are free to go home!
theautismblog: Are parents allowed to stay with their child overnight?
JE: Parents are allowed to stay with their child overnight, but only one parent may sleep at the bedside. This is for safety reasons and the need for staff to have easy access to the patient. So there is one sleeper chair and one rocker at each bedside.
theautismblog: Are special diets accommodated?
JE: Yes, the hospital does accommodate special diets. Just make sure to let them know as soon as possible.
theautismblog: Do you sedate kids who need procedures and are not able to comply? What kind of sedation is used?
JE: We try not to sedate children if at all possible during a procedure. I know this can be difficult as a parent to watch your child having a procedure. Child Life Specialists are very good, and I would highly recommend having them there from the beginning to problem-solve how to get through the procedure as quickly and comfortably as possible.
The staff is also very good at finding ways to help a child cooperate or to get through a procedure quickly. If sedation is necessary, we monitor vital signs frequently until a child is fully awake.
theautismblog: Are restraints used? What kind? What if my child won’t stay in bed? How do you deal with that?
JE: Restraints may be used – but rarely. Restraints are used only for safety reasons and to assist with treatment such as keeping tubes from being pulled out. Restraints require a doctor’s order and are assessed every hour for ongoing need.
theautismblog: What tips do you have for parents who want to be prepared, should their child ever need to be hospitalized?
JE: To be prepared should your child ever need to be hospitalized, I would definitely suggest:
- A binder describing your child in great detail including your child’s method of communication, typical behavior, functioning, mood, challenging behaviors, sensory issues, likes and dislikes, triggers, and calming techniques.
- List of medications, doctors that they see on a regular basis and phone numbers. Have copies of all these, so you can just hand one to hospital staff. They can then make a larger copy to put at the bedside so anyone who gives care to your child can see it.
- Let your nurse know if you are concerned about anything or if your child is displaying unusual behavior that concerns you! You know your child best and you are their advocate.
- If possible, have one parent or relative stay at bedside. If this is not possible, make sure that you can be easily reached by phone.
- Sometimes, it can be arranged for nursing assistants or volunteers to sit with a child if the parent needs a break or needs to be absent for some reason. Ask if this is possible.
- If your child needs to have an IV or nasogastric tube placed or some other procedure, there is a procedure room on every unit. You can ask for the procedure to be done in there so the child does not associate the room with the procedure. Remember that you can ask for Child Life staff to help your child with any procedures.
theautismblog: Thanks Julie, for the valuable information! While no one wants to think hospitalization will ever be necessary for their child, having some idea of what to expect and being prepared will lessen the stress for all.
If you have a question about hospitalization for a child with autism on a medical unit, or tips that you have learned from your own experience, we invite you to write to us about it.