Over the weekend, my daughter had another hospital stay. Thankfully, it wasn’t anything serious and just for observation, but I realized something: Elizabeth has been in the hospital for a total of 5 weeks in the short 9 months since she’s been born. The hospitalizations have been in three different hospitals in two different states, for a total of 6 different times.
In this time I have learned A LOT. With the most recent hospital stay, I realized that I needed to write a blog post to help other moms who may have a child in the hospital currently or in the future. No one expects to have a child with complicated medical needs and no mom hopes that her child will have to spend a lot of time in the hospital, but if your child does have a hospital stay, it’s best to be ready!
19 tips for preparing for your child’s hospital stay and what others can do to help!
1. Be prepared.
If you know ahead of time that your child may be admitted for a hospital stay there are some ways you can be prepared. There have been several times where we had a specialist appointment or a procedure done and didn’t know we were going to be admitted, but from experience, I knew to bring along things just in case. Even if you are 100% sure they won’t be admitted it’s great to have a bag in the car for just in case!
How to prepare:
- Pack a bag: Include several days of comfortable clothes for yourself and your child. Include toiletries and maybe even a roll of toilet paper (the hospital toilet paper is awful). Always include a book, laptop, or something for you to do. Throw in a few toys for your child as well.
- Bring copies of your child’s paperwork. Since both of my children have special needs I have learned to just have a folder with copies of everything in them. What to bring: records, names, numbers, and addresses of all doctors and specialists, lists of procedures and tests that have already been done, evaluations, lists of current medication, and any other paperwork that may help or obtain to your child.
- Bring Special Supplies. My daughter is on a feeding tube, and we were told after her surgery that if we were ever admitted we needed to bring all her tube supplies because not all hospitals have the right ones that she may need. A good idea is to have an extra bag with all of your child’s supplies to carry with you at all times. For example, we always have extra feeding bags, syringes, tube extensions, her feeding pump and backpack, and a water bottle for flushing out her tube.
2. Know the Hospital Rules.
Every hospital is different, but every hospital has their rules. Be mindful of hospital quiet hours and know when visiting hours start and end. If you are sharing a room with another patient, be courteous of them. If you are not sure what the rules are, ask your nurse or social worker.
3. Take Advantage of the Hospital’s Supplies and Resources.
The hospital will give you a lot of things for your stay. Diapers, wipes, and bath toiletries if you have a baby, and syringes, thermometers, and more. Take advantage of this! Don’t use your own supplies if you don’t have to.
Anything that goes into the hospital room will be thrown away so take it if it can be used again! We have been able to save some money from some of our hospital stays because of all the extra diapers, wipes, thermometers, and feeding supplies the hospital has given us. It’s nice to take them home and have extra!
Make sure to take advantage of the hospital’s parent room which usually includes paper products for food, use of the refrigerator, free coffee, and ice water. Ask if there is a playroom for the kids. Many times a Child Life Specialist can bring you toys, games or DVDs for your child to play with or you can ask your nurse if your child is allowed to go play down in the playroom.
4. Know Your Rights.
Do you know your hospital rights? You are allowed to ask questions, you are allowed to ask for a different nurse if you don’t like the one you have, and you have a right to speak with patient advocacy if something has happened during your stay that was not right.
We have experienced all of these including asking for a nurse switch several times. Nurse shifts are 12 hours and if you have a reason not to like your nurse you really don’t want to have her taking care of your child for half a day. During one hospital stay we had to ask to speak with patient advocacy because of several severe mess ups. We were not happy, but letting the appropriate people know can do a lot of good.
5. Ask to Speak with a Social Worker and/or a Chaplain.
Social workers are your advocates. They can help with questions, discounts, family events, awareness, and more! The chaplain is there if you need someone to talk/vent to or need prayer. Both of these people are there at your disposal during a hospital stay and they want to help.
6. Speak Up, Ask Questions, Advocate!
This is your child. Don’t be afraid to speak up if you don’t like something or ask questions if you don’t understand. I would often question the doctors and nurses if I didn’t understand or if I thought something was being done wrong. You are your child’s advocate, they are depending on you to get them the best care possible.
7. Take Advantage of Breaks and Downtime.
It’s so hard to accept help or to want to leave the room when your child is there and needing you. It can also be hard to leave the room for a moment knowing you might miss your chance to see a doctor or specialist and to question them. The first time I was in the hospital with my daughter I didn’t leave the room for two full days. I realized afterward that it was okay to take advantage of small breaks, I needed it.
You can walk around the halls, go to the parent’s room, go outside for fresh air and more. If you’re alone, ask a nurse to sit with your child for a few minutes. Some hospitals have volunteers that are there just to sit and play with your child so that you can get a break. Take advantage of this and ask your nurse if this is available.
If friends and family want to help during a hospital stay, have them take turns staying with your child so you can shower, eat, and get a break. Remember: if you don’t take care of yourself, then who will take care of your child?
8. Use Hospital Discounts & Special Housing Options.
A lot of places will give a hospital discount if you have a child in the hospital, even the hospital will give you a discount! Make sure you ask for wristbands that show you are a parent of a child in the hospital to get a discount in the hospital cafeteria, bookstore, and at local hotels.
Keep in mind that some hospitals have special housing options at a discounted price for parents with a child in the hospital. Also, check out the Ronald McDonald House if you are far from home and need a place to stay. They are a wonderful organization that provide beautiful facilities and food during your child’s hospital stay.
11 Tips For Your Child’s Hospital Stay from Other Parents:
- “First, it is ok to ask for a different nurse if you don’t feel comfortable with the one you have. Second, it is ok to go take a walk and get out of the room. Third, make sure you are eating and staying healthy! Fourth, bring a book or something to do so you’re not constantly staring at the clock and waiting on doctors. These are the things I learned.” – Betty
- “Meet with a social worker and take advantage of every financial assistance and service available during a hospital stay. Even if you think you can manage, your tomorrow might not be as easy.” – Kimberly
- “Don’t be afraid to advocate for your child. If you’re not comfortable with or don’t understand the information you’ve been given, ask them to take their time and thoroughly explain what’s going on. If you feel like your child isn’t receiving proper treatment contact the patient advocate rep.” – Lindsey
- “Bring a summary of medical conditions, history, and medications and keep it at the bedside. This saves you from having to repeat yourself. Being extra copies as there are always so many people. Stock up on supplies if possible while in the hospital and bring with you special supplies that the hospital may not have. Get a gift card or credit card to use for food or coffee. Use the hospital volunteers or child life specialists to play with your child when you just need time to decompress. Find your go-to person that you trust to get info from, whether it is a nurse, doctor or resident and bring them coffee. Update only one family member and let them update everyone else.” – Francine
- “I always pack fresh fruit and vegetables for hospital stays. They are such a great break from vending machines and cafeteria food. I also find a good coffee place somewhere outside of the hospital. That way I have a place to get some fresh air off campus.” – Stephanie
- “Keep a notebook or use your notepad on your phone to keep track of questions for morning rounds. Keep an overnight bag packed with toiletries in between hospital stays to grab on the go so you aren’t stuck without a change of underwear, comfy pants, and toothbrush/toothpaste. Keep a steady supply of chocolate on hand to make it through the stay.” – Jennifer
- “If you are a parent that stays at the hospital 24 hours with your child, be prepared. Take books, magazines, DVDs (some hospitals are equipped with DVD players) and an extra change of clothes for a shower. Make sure you stay healthy: eat. It’s okay to go get some food or take a walk. Ask as many questions as possible. It’s okay to have visitors unless your child is in isolation. If you need to take notes, take them. This helps us remember things later. If you don’t like the nurse, request a new one.” – Bianca
- “Bring short sleeve snap-up Jammies for your child or baby. They are more comfortable than hospital gowns and allow for cord management, IV access, etc.” – Shawn
- “If you feel strongly about something and you are receiving resistance, the magic phrase is, ‘May I please speak to a patient care representative?’ It gets a lot done very quickly.” – Bailey
- “Ask questions, be your child’s advocate, bring food from a store since cafeteria food is expensive, and remember: it’s okay to take a break. Bring things to do for yourself, take advantage of child life services, and bring your own soaps and toiletries for showers and everyday care.” – Stacy
- “Wear comfy clothes and ask lots of questions. You need to know what’s going on with your child, if someone says they are going to so something (i.e. Run tests), follow up and make sure they did or find out why they didn’t. Always, always talk to your doctor, make it a top priority to know what’s going on and what’s going to go on. You will go stir crazy but that’s okay, everyone does. Go downstairs to grab a coffee and sit for a few minutes of quiet time without the beeping machines and the nurses and doctors going in and out.” – Sara
5 Tips for Those Who Want to Help:
1. Give Gas Cards and/or Gift Cards.
Gas cards are perfect for families who are traveling back and forth from the hospital or who have to travel out-of-state for hospital care. Gift cards are good to help with meals and food while the family is in the hospital so that they don’t have to eat only at the cafeteria. It was such a big help to receive both of these types of cards during the times we spent at the hospital with my daughter.
2. Bring Meals.
A great way to help is to bring meals while the family is in the hospital. It helps save them money so they don’t have to eat out and gives them a little taste of home away from home. Another way is to bring meals right after they come home from the hospital. It is stressful and exhausting at the hospital and coming home from that it can be hard to put together a meal. No matter what you do, meals are definitely appreciated during or after a hospital stay.
3. Give them a Break or Keep Them Company.
One of the best things we had during our many stays at the hospital, were the people who came to help give us a break or to just keep me company during the long days of waiting for the doctors and waiting for procedures to be done. This is one of the best and easiest ways to help!
4. Send Care Packages.
If you are far away from the family in need, you can still help! During several of our hospital stays we received care packages full of non-perishable food and snacks, baby toys, gift cards, books, and other things to do. This is a great way to send cheer from far away.
5. Order Hospital Messages or Gifts.
A lot of hospitals have a place on their website where you can send messages or purchase gifts that will be delivered to the patient’s room. This is another great way to show that you were thinking of them when you can’t be there in person.
3 Tips From Other Parents:
- “Help with parking expenses was a huge relief to us. Also having extra sitters at the hospital just so we can shower, eat, and take care of everyday things like bills, etc.” – Kimberly
- “I loved getting gift cards for gas/fast food when our son was in the NICU. It is financially draining to have to eat out and spend so much gas money driving back and forth every day to see your child. I think that would be a good suggestion for anyone who wants to help out a family with a sick child.” – Devyn
- “I loved receiving non-hospital meals when my friends brought it to me.” – Bianca
What tips could YOU give? Have you ever had a child in the hospital or helped a family who had a child in the hospital? I’d love to hear your story!