12 Things You Need to Know When Your Child is in the Hospital
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***I am not a lawyer. This is not legal advice.***
I have been wanting to write this post for a very long time. My daughter who is two years old has been inpatient at the hospital nine times and this doesn’t include ER visits!
Many of these hospitals have been all over the country, including multiple children’s hospitals in Georgia, one in Boston, and two different hospitals in Colorado. During these hospital stays, I have learned so much
While I do not plan on writing a book on this topic, I did want to write a blog post about it because I have heard so many hospital horror stories and it makes me so upset. We as parents have many rights given to us when we or our children are in the hospital. While not all hospitals will acknowledge these rights and while every hospital and every state and every country has different standards, these are just a few things that you as a parent can request when your child is in the hospital.
Many of these I did not know until we were told or until we figured it out ourselves and that’s why I wrote this so that our experiences could help other parents who are also fighting for their kids in the hospital too.
Hospital Rights for Your Kids
Please keep in mind that this is not legal advice and that each hospital’s rights and rules may vary.
1. You can request to see a social worker.
Hospital social workers are there to help your child and your family through your hospital stay. Some of their jobs are to:
“…help families understand a particular illness, work through the emotions of a diagnosis, and provide counseling. Social workers are can also work in concert with doctors, nurses, and allied health professionals. They help sensitize other health care providers to the social and emotional aspects of a patientâs illness. Hospital social workers use case management skills to help patients and their families address and resolve the social, financial and psychological problems related to their health condition.” – Social Workers in Hospitals
I have loved the social workers in every hospital we have been in. They usually are so sweet and so kind and they are able to help you with resources (local and inside the hospital) that you may or may not know about. If your child is admitted to the hospital make sure they have sent a social worker to talk with you.
2. You can request to talk to a patient advocate.
After my daughter’s two surgeries, the nurse and tech had no idea what meds she was given and if or when she needed more. We were very upset. We requested to talk to the hospital’s patient advocate and filed an official complaint. Medication is not something you mess around with and it was definitely not something that should have happened.
You can also file an official “grievance” which should be investigated by the hospital and the Joint Commission.
3. You can request to stay if you are uncomfortable with your child being sent home.
This is one I definitely wasn’t aware of for a while. Some hospitals will even ask you if you are comfortable with taking your child home or if you want to stay another night. This can also be used in the ER if they want to send you or your child home, but you think more needs to be done.
You can say something like, “I’m not comfortable leaving yet, is there anything else you can do?” or “I’m not comfortable going home, I think ____ needs to be done first.”
4. You are able to request a different nurse or tech.
This is one we have used several times. We’ve had a couple of nurses that were just awful and my husband would go to the desk and ask if we could have a different nurse assigned to us. Usually, it’s not a problem and they can switch your nurse with another.
5. You are allowed to have a say in who can and can’t be involved in your child’s care. This includes students and residents and applies to teaching hospitals as well.
A lot of hospitals will have days where students will come by and get practice with doing things in the pediatric floor. For the most part, I have not minded that. Every Tuesday in one hospital the students would come in and they would bathe and play with my daughter. She loved it and I did too!
There have been times, however, when we had a resident doing most of my daughter’s care and I didn’t care for the resident. The residents tend to think of themselves as just as good as doctors. Sometimes, yes, that’s the case, but sometimes not. Sometimes care can get confusing when you have several doctors and a resident all telling you different things so having a say in who has access to your child’s care and who doesn’t can be helpful.
6. You can request to move to a different hospital if you are not satisfied with your child’s care.
This is not one that we have had to do (yet), but some hospitals cannot give the kind of care your child may need depending on how serious their condition is. Some hospitals just have horrible care and you can ask to be moved to a different one because of that.
7. You are allowed to request that specific tests be done.
This is an important one. When my daughter was in the hospital for two weeks in Atlanta and they were trying to figure out what was wrong, I did my own research and requested several tests to be done.
They were doing plenty of tests, but when I researched and saw one of the big things of “Failure to Thrive” can be heart problems, I immediately asked them to do two heart tests. The doctors agreed with my research and did the tests and that gave me the courage to continue to ask for certain tests in the future if I thought it might help tell us what was wrong.
8. Your child has the right to have their pain managed effectively.
Sometimes Tylenol is just not enough – especially after surgery. If your child is in pain even after getting pain medication. Talk to your child’s doctor about what he can do to help your child and manage their pain more effectively.
9. You can request that the hospital staff or doctor call your child’s pediatrician for a consult.
Your child’s pediatrician knows your child best. They have a history with your child, plus all their records. It can be very important to get the pediatrician’s take on what’s going on in the hospital and what he thinks should be done too.
I have lost track of how many times we have requested this, but it helps every time. There’s something about having a doctor who knows your child’s medical past talk to a hospital doctor that changes everything – especially if the hospital tends to not side with parents.
10. You are allowed to have access to all films, records, labs, and reports on your child.
I love this because there are times when doctors and staff make mistakes. They are human and can make errors at times too. When I have access to my child’s lab work I can research what the levels or numbers should be. When I have access to my child’s records I can read over things that the doctor may or may not have already told me. Remember: knowledge is power.
11. You are allowed to participate in rounds or call a team meeting of all doctors and specialists.
Most mornings when we were in the hospital we would have all the doctors and staff on our daughter’s team come in and give us updates, information on tests and labs, and answer any questions we have. This is called “rounds.” It is important that you know that this is your time to ask your questions and say anything you need to say.
We also have requested a team meeting of all the specialists working on our daughter’s case. When we were in Boston, all 14 specialists sat down with us and had a meeting on my daughter’s case. It was one of the most amazing things I’ve ever seen and doesn’t happen often!
12. You are allowed to ask for a second opinion from a different doctor in the same hospital.
Just like you are allowed to ask for a different nurse or tech (see number 4.), you can also request to get a second opinion from another doctor in the hospital. This may be difficult when your child is in the ER and may be easier if your child is inpatient.
Sometimes doctors will do this anyways and will ask a colleague for a second opinion. We’ve had this done several times and it can definitely be confusing if you get two different answers. Just make sure you do your research and go with your gut!
What about YOU? Did you know any of these? Are there any that I missed? What has been your experience when your child is in the hospital?
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These are great. My youngest was recently in the hospital with pneumonia, and my two youngest twins were both in with RSV when they were 9 months old. Both times I really felt like the hospital staff listened to me, and I was really impressed at discharge time when I really felt like the doctor was asking if I was comfortable with the idea of sending her home. It was definitely not an automatic, and I never felt like they were kicking us out, they really looked me in the eye, told me what they thought the plan should be, and very clearly asked me how I felt about this and if I, as the parent felt comfortable with it and if I felt like I could take it from there and care for her at home. I was surprised, because you hear so many stories now of people feeling like they were “kicked out” of the hospital before they were ready.
That’s so great! Sounds like you had a really amazing experience. Some hospitals are fantastic, others not so much.
Wow, this is so useful! My oldest son was in the hospital for two months when he was a baby, and it was a grueling experience. Like you say, you learn a lot, but it would be a lot better if parents knew all the things listed here. I’m going to share this!
Yes, I agree. There needs to be more knowledge and support out there. Thanks for sharing!
I love this. I know many parents feel so helpless and bullied in this situation. Very helpful information.
This is great, it’s good to know how many rights parents have when their kids are in hospital.
Great article on an important topic! A few things I would add:
1) Parents of kids with mental health issues who are admitted to ER need to be assertive in making sure the staff seeks your child’s best interest in treating them. We went through an 8 hour ordeal when my daughter was 9. Her psychiatrist ordered her hospitalized but after calling around looking for a bed, she couldn’t find one. The only other option is to go through the ER and they must find a bed for the child (which is no easy task when you are talking pediatric psych wards.) Although we were at a nationally recognized children’s hospital, we were treated as a nuisance and at the end of the ordeal were yelled at by the social worker for using the ER for her admittance. Unfortunately this is a common experience among those of us with children who are hospitalized for psych issues.
2) Transferring hospitals may involve a discussion about using a transport ambulance service or signing out your child against medical wishes. We learned the hard way (including the time my son had seizures and needed to transfer to a pediatric friendly ER) that these private services charge lots of money and do not come in network with insurance companies. We were left with a $1500 bill (allegedly actually $3000).
3) Privacy laws make it harder and harder to advocate for your child’s rights. In order to gain access to my daughter’s medical records at Lurie Children’s Hospital in Chicago, I had to have her written permission. Different states have different age minimums but here it is 13. That goes for psychiatric records as well.
Your article is important because when your child is sick, you are vulnerable, scared and faced with decisions that are significant. We must all continue to advocate for the best practices to help our kids.
Stephanie, this is fantastic information and yes, I agree with all of it! Thank you for sharing your knowledge and wisdom.
Hi , what about leaving when you feel every thing is done.
She has been in there a month cause she was 22 days early. Fist thing was feeding. She had to drink from the bottle. Mastered that. Then it was the stupid â car seat lawâ she has to be 5 lbs. even though clearly it said 4lbs on all standards from car seat company. So we took care of thatâŚ. Then it was oh her heart rate dropped a little â automatic 5 more days. 5 days later they said oh it happened again. 5 more days they said. They have done that 3 times to us. They failed her on car seat test after that after passing it 5 days beforeâŚ. Iâm sure they know insurance only pays fo 30 days in the hospital NICU. Which is where theyâve kept her the whole time. The 30 days is now over and she was due to come home todayâŚ. They said no.. maybe a few more days!
Can I take her out of the hospital when out their ok??
Frustrated mom
My son is 18 and in high school, we are currently in the hospital right now for pneumothorax with bleps (collapsed lung/Bleps air pockets on the lung) We do not live close to a major medical facility, in fact, we are two and half hours away. He was diagnosed in our small town and sent down by ambulance with another patient. Which felt really off, we came to the hospital they were not going to let me stay as his parent. What was worse the doctors and staff were not very nice as we were put on an adult floor. I did not know anything about a social worker. My son underwent surgery and we were told he would not need to worry about a pneumothorax coming back.
Three in a half weeks later we were back down and had a scheduled CT my son was complaining about back pain as well as having a hard time breathing. They dismissed it until the CT came back but they did not show us. Since we were at the clinic and did not have an appointment they talked about my son in the waiting room where others could hear what was being said. Then I was told he would need to be admitted and I could not stay. This time I said they needed to find a way because the care last time I was not going to leave my son. We were put back on an adult floor even though I continued to ask why we could not be in pediatrics. I had to ask to talk to the administrative rep and I never talked to them only the nurses did. I was also talked about by the nurses which I overheard during my son’s hospital stay. I was not sure what to do and if I could transfer him. We did not transfer, but the experience was horrible. We will not be going back to that hospital for any care. I wish I would have read this sooner. But really what would you have done. I felt like I was a nuisance and they used Covid as an excuse to where no one else could visit. However, on the hospital website, the visitor policy had no changes at all.
Hi Judy,
I am so sorry to hear about your experience. It sounds miserable. Some hospitals consider 18 to be an adult and will not put them on the pediatrics floor. Some hospitals will see a pediatric patient up until 21. Each hospital varies so it sounds like the one you were at considered him an adult which is why he was put on the adult floor.
As far as the CT, they will not offer to show you, however, you have a right to the records. There is usually a way to request the records via the website, but since your son is considered an adult he may have to do it.
As far as the admit, since they considered him an adult, they would not let you stay. All hospital rules during COVID were like this. For pediatrics, only one adult was allowed to stay, but none of the hospitals were letting adult patients have visitors, and since they considered him an adult you were considered a visitor.
Next time definitely ask to speak to a social worker or patient advocate. It is your right. Always ask for a copy of your rights when admitted. They are supposed to give them to you and have you sign that you have read them. I hope your son can stay out of the hospital and things get better!!
My 11 year grandaughter hospitilized for eating disorders hospital gives the drink boost when not all food tray is eaten so grandaughter vomits boost an keeps vomiting it out an is given more boost to drink I feel like /hats torture can I have her transfer her another hospital plz I need advice
Hi Frances, I think it depends on what is going on and what hospital she is at. Do you have full custody? Is she vomiting the boost because she doesn’t want the calories or for another reason? Have you spoken with the doctors and staff about your concerns? My advice would be to talk with the doctors and ask what else can be done. Then, if needed, call other hospitals that you might like to take her to and ask them about their eating disorder programs. Ask what they would do in this situation. I would get a lot of information before making the switch to make sure you agree with the way they handle eating disorders.
11. You are allowed to participate in rounds or call a team meeting of all doctors and specialists. 14 specialists sat down with us and had a meeting on my daughterâs case.
– what hospital in boston?
here are the specialties that you see in hospital settings, and you are able to seat 14 of them?
i call CAP
Allergy and immunology (outpatient)
Anesthesiology
Dermatology
Diagnostic radiology
Emergency medicine/ Trauma
Internal medicine
Medical genetics
Neurology
Nuclear medicine
Obstetrics and gynecology(X)
Ophthalmology
Pathology
Pediatrics
Physical medicine and rehabilitation
Preventive medicine(X)
Psychiatry
Radiation oncology
Surgery
Urology
Yes, it was at Mass General Children’s Hospital and I have never seen anything like it before or since. Here in Colorado, we cannot even get 3-4 in a room together. These were the doctors/specialties we saw:
– Hospitalist
– Immunology
– Genetics
– Neurology
– Gastroenterology
– Motility & Neurogastroenterology
– ENT
– Pulmonology
– Nutritionist
– Speech Therapist
– Occupational Therapist
– Orthopedics
– Cardiology
– Interventional Radiology