Tips for Parents Whose Children Have Recurrent Hospital Stays

Hospitalizations, at least for our family, always last much longer than expected. The longest we have been inpatient was a week, when my son had a respiratory virus. Because Roland has hypotonia (low muscle tone), his muscles are not the most effective at removing mucus and other contents from his chest when he is sick. On this occasion, Roland needed extra help to help clear his airways while his body fought off the virus. This meant receiving oxygen, regular suctioning and cough-assist therapy.

It was one of the longest weeks of my life, and I feel for families who have hospital stays for much longer periods of time. Time moves differently inside a hospital. It slows down, making days seem like weeks in themselves.

We have experienced hospitalizations enough to know how it feels, so I made a list of tips to survive hospitalizations, and things to pack that may make your stay a bit easier:

Packing

If you are fortunate, you might get a “heads-up” before your child has to be admitted to the hospital; this allows you some time to pack (somewhat) beforehand and think about what you need to bring with you before leaving home. However, other times, you may find yourself in a panic, only leaving with your child and your car keys (maybe a diaper bag or purse). Then you might find yourself, once your child is settled in the hospital, having to run back to your home for your belongings, or having someone else bring them to you at the hospital.

As a mom who has been in both of these situations, I would suggest keeping a travel bag packed at all times, so that you can grab it in emergencies and not have to dedicate any time to packing. This could be just enough stuff to last you a couple days, until things have settled a bit and you can get more things from home later on. Pack all the things you normally would for an overnight stay in this bag: toothbrush, toothpaste, contact case and solution, comfortable clothes, prescription medicines. Keep this “hospital bag” easily accessible.

The times I have stayed at the hospital with my child, I did not have family available to help me. My husband was a graduate student and caring for our youngest son at home. So preparing and packing beforehand would be especially helpful for me, because I never know if I will have outside help when I need it to grab things from home or from the store for me.

Also, the times I have been inpatient with my child, I was under-packed and grossly unprepared for long stays. Every time I had the bare minimum with me (and relied on the Ronald McDonald room in our hospital to wash my three sets of clothes).

Here are some extra things I wished I had packed prior to my son’s hospitalizations. They are little things, but they would have made my stay less stressful — and perhaps a tad bit more bearable:

1. Chapstick. Hospitals are always so dry and my lips will undoubtedly reflect the harsh air. It’s also not something I want to pay $4 in the gift shop.

2. My own soap, shampoo, lotion, and perfume. Hospital soaps and shampoos are usually crap. They leave you feeling like you have an oily film on your skin. When your child is staying in a hospital, sometimes you need a long, hot shower to make yourself feel a bit more human again. If you don’t want to carry large bottles or soaps, buy travel sized ones to put in your bag.

3. Diaper cream. For some reason (and I know that this probably isn’t the case with every hospital), our children’s hospital does not supply patients with zinc oxide diaper cream (like Desitin). This requires a prescription. Instead, they give you some cream that doesn’t cut it. If your child wears diapers, bring your own diaper cream.

4. Pain relievers. Tylenol, Advil or whatever you use. I don’t want to have to stick out a bad headache because the gift shop isn’t open on a Sunday. I also don’t want to pay $10 for a bottle of Tylenol when said gift shop opens on Monday.

5. Makeup, if you wear it. Sometimes it’s the small things that help you get through really tough times. I have found small “creature comforts” can make all the difference. Most of the time, I did not want to dedicate time or energy into putting a full face of makeup on, but just using mascara made me feel better.

6. Cash. If you can’t get away from your child’s room for a long period, you can find yourself living off of vending machine food. Hopefully your hospital offers room service, and this doesn’t happen to you. Cash is always good to have in hand for other things you may need to buy in the hospital, places where debit and credit cards are not accepted.

7. Snacks. You cannot let yourself go hours without eating. But that can be hard to do when you are inpatient, between the chaos of people in and out of your room, a very unwell kiddo who doesn’t want you to leave their side and feeling drained or depressed; sometimes you may have to remind yourself (make yourself) eat, even when you are busy or have no appetite. Your kid is counting on you to stay strong.

8. A comfy pillow from home. Any parent who has spent nights in the hospital with their child knows the awfulness of sleeping in a hospital chair or on a guest bed. Having a comfy pillow can make it easier to get some much-needed rest.

9. Feminine products. Sometimes remembering when you are going to start your period gets lost in the chaos of having a child hospitalized. Because of this, it’s a good idea to keep some feminine products handy in case you start while away from home. Trust me, not packing any pads or tampons is not a mistake you will make more than once.

10. Something you enjoy doing. Whether it be a book, a movie to watch in your room, a crossword, magazine, word search or just your cell phone so you can Facebook — pack something you enjoy doing and that will keep your mind off of things for a little while (and help to pass the time). While you may find there are several programs in the hospital that provide your child with things to do and enjoy, there is a lack of programs like these for the caretakers of these children. So often times, it is up to you to bring things you enjoy with you. Taking care of your mind while staying in the hospital is just as important as taking care of your body. Sometimes all we need is a little 15 minute break to make us feel refreshed and human again.

11. A notecard with your child’s medical information on it. This is especially helpful if you are admitted to a hospital that you are unfamiliar with (and they aren’t familiar with you or your child). On the card, I would write down things like: your child’s primary diagnosis, emergency contacts, primary care physicians and their contact information, a feeding schedule (if your child is fed via a feeding tube, like mine), pharmacy and insurance information, and known allergies. Even though you may know these things by heart, when you are placed in a stressful situation, you can panic and not think clearly enough to relay this information to others (and to have to keep repeating it over and over during your stay). It’s a lifesaver to be able to just hand them a card with all the information already on it.

12. Headbands and ponytail holders. I didn’t have the time nor the energy to dedicate to styling my hair any of the times my son was inpatient; having headbands and ponytail holders was a godsend. I had longer hair then, so I could just whip my hair up into a bun so that it was one less thing I had to worry about.

13. A fan or a white noise machine. This is probably one of the things I wished I had with me the most. Our family always sleeps with fans on for the white noise they provide. The white noise is soothing, but also serves to block out other noises. This would have been so helpful in the hospital where there were footsteps down the hall at all hours of the night, doors slamming, nurses talking and alarms going off.

Tips

Now, my tips to make your (and your child’s) time inpatient a little easier:

1. Take advantage of the programs the hospital offers. The hospital we are typically admitted to has a Ronald McDonald room, where families can stay (for free) if their child is inpatient. They also prepared free, nightly meals for families and allow families to wash their clothes in their laundry room (also free of charge). I cannot stress enough how much this charity has helped my family when we were in need. If your hospital has a Ronald McDonald room (or even a Ronald McDonald house nearby), please take advantage of it.

2. Your hospital may offer other types of charities, programs, and/or services. Some of these may include: music therapy (performed by volunteers), book and movie libraries, support groups or other scheduled get-togethers with inpatient families, and/or volunteers to play with/read to your child or sit with them while you get away for a little bit. If this information is not given to you during admittance, be sure to ask a social worker, nurse or other medical personnel and they should be able to point you in the right direction.

3. Ask for help. When people offer help, take them up on it. It makes a big difference. If someone asks what they can do for you, be honest. Maybe you just need their time, someone to vent to, or maybe someone to get food for you (because, let’s face it, hospital food gets old real quick), or gift cards for places to eat or for the hospital gift shop.

4. Advocate for your child, stand your ground, and don’t let anyone push you into agreeing with something you are not comfortable with. You know your child better than anyone.

5. As I have mentioned before, eat and shower regularly and try to get as much sleep as you can. Your child is counting on you.

6. Talk to someone. Family, friends, support groups (online or in person), or even nurses and aids. It makes a big difference.

If you have ever been inpatient with your child, what are some things you have found make staying in a hospital more bearable? What would you add?

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