What to Expect at "Club Med":

Practical Tips for a Successful Hospital Stay

by Lisa Greene 

The first time your child gets admitted to the hospital can be a bit disorienting. Most hospitals are really big and really confusing! Communication may not be that good even with the best of intentions. The medical system is complicated. And then we add the stressful nature of it all and it can be overwhelming. 

As a parent of a child with CF or another serious chronic illness, it is likely that you will quickly learn all of the ins and outs of hospital life. Here are some tips to start you on your way and make the first couple of stays easier. Bear in mind that all hospitals are different but I think you'll find most of these tips applicable to most situations. 

1. Packing List:Starting with a list of things to bring with you, keep in mind that the rooms are small, storage space is limited, and you might be sharing a room with another family. The key is to pack lightly yet efficiently so that you are as comfortable as possible but not overburdened with too much "stuff." Here's my personal packing list: 

Items for your child:

• Pajamas, robe, slippers
• Sweat pants, T-shirts, and flip flops (for the shower and for walking outside)
• Undies and socks
• Personal toiletry items (toothbrush, paste, hairbrush, deodorant, shampoo/ conditioner, soap, Mini blow dryer, hair ties for long hair)
• Toys, games, art stuff, books, ipods, computer, DVD's, music, etc. for entertainment
• School books and assignments as needed
• Bring a few days worth of medications- especially pancreatic enzymes
• Special (small) food items including microwavable and instant things (my daughter just loves Miso soup as she recovers from surgery so we bring packets of soup with us)
• Vest System if you use one (our hospital has a very old model and often can't locate one that's available).
• Yogurt or probiotics with lactobacillus  - one dose a day can help keep C diff away (Clostridium difficile). Know the signs of C diff. 

Items for you:

• Office supplies: Colored paper or notepad, pens/pencils, file folder, big envelope. Take good notes on everything. The file folder or big envelope will help you to keep track of papers and forms you receive.
• Your personal items: PJ's, change of clothes (I find that exercise sets with a tank top works great as they are comfie, they come with a jacket, and they double as PJ's if needed), toiletries (including shampoo/soap/ mini blowdryer, etc.), your own medications if applicable.
• Easy slip-on shoes and/or slippers, flip flops (for shower and outside walks)
• For long stays: a small bottle of dishwashing liquid, laundry soap, air freshener (for the bathroom) 
• Laptop computer, cell phone, camera, ipod & headset, and chargers!
• Extension cord (with grounded plugs)
• Coffee mug and instant coffee packets
• Reading materials, movies, puzzles, things to do for you
• List of phone numbers and email addresses for friends and family
• Sleeping bag, pillow, and fitted bed sheet (size for a twin bed)
• Empty shopping bags to bring home all of the gifts your child will accumulate
• A few ziplock baggies
• Little comfort snacks for you (ie: chocolate!)
• Earplugs and sleep mask for eyes (maybe a set for your child, too)
• Disinfectant wipes (to wipe down commonly touched items like bedrails, doorknobs, remote control, etc.) 

2. Getting a PICC line:Be aware that, depending on your hospital, you might not get the PICC line put in the same day you arrive. You might end up getting an IV put in on Day One and then having that removed and getting a PICC on Day Two which is a bummer especially with a younger child (this means two different procedures and two pokes). Ask your doctor or nurse coordinator who is setting up the hospital stay about this issue so you know what to expect. 

3. Take good notes on everything.  I use a pink legal pad so I can easily find it when the room gets cluttered. Write down your questions and then write out the answers. You will find this "log" to be an invaluable reference later down the road. 

Write down doctor's names, schedules for nurse rotations and their names, test results, medication names, dosages, and timing, etc. There are a lot of different doctors that will stop by to see you and if you attend a teaching hospital like we do, there will also be residents and researchers. Then there are nutritionists, respiratory therapists, and of course, a steady stream of rotating nurses. It gets really confusing! 

The main people you need to really get to know are your attending pulmonologist as well as the floor pediatrician- they are your advocates and your "team." The way our CF Team works is that there is one CF doc assigned for all CF hospitalizations all week. That is our attending pulmonologist. He (or she) is the "head honcho" and in charge of all decisions. Then there might also be a  "floor attending pediatrician" who is also in charge but is ultimately directed by your "attending pulmonologist." These are the two doctors who are primarily in charge of your case. 

Now to make it really confusing, they may delegate. We had a resident (a doctor-in-training) who came to visit regularly to gather the details on our case before the attending pulmonologist came to visit. The floor attending might also have a resident that he/she works with. It might take awhile to figure out who you are talking to. Just be ready to tell your same story over and over to lots of different people. Then as I already mentioned, there are respiratory therapists who will schedule your breathing treatments and chest physical therapy (in the case of cystic fibrosis) as well as a nutritionist who might help you with ordering food including extra calories, milkshakes, etc. Tip: we bring our own vest system with us to the hospital. 

Lastly, about the nurses: they will make or break the "experience" of your stay. Most of ours have been superb. They often work in ten or twelve hour shifts. Find out the timing of their shift changes and try to anticipate, and ask for, what you might need an hour before the change. They will be basically unavailable for about an hour during shift changes.  If you have a problem that you can't resolve with your nurse, ask for the "charge nurse." He or she is the one in charge of the nursing staff on your floor. 

4. Know what medications your child is getting. Make good notes on all of the medications your child is getting including the amount of dosage and timing (even if you don't really understand it all). Ask lots of questions and write it all down. Double check the medications when the nurse starts the IV. Nurses are human and make mistakes just like we all do so it is a very good idea for you to double check everything. 

As you are advocating, you will be teaching your child- by your example- to advocate for him or herself. My nine-year-old daughter was double checking everything during her last hospital stay and caught a (very minor) error. She enjoyed learning about her care and the nursing staff was wonderful about teaching her. And, if you are going to be doing home IV's, you need this information anyways. 

Tip if you plan on doing home IV's: Figure out the dosing schedule that works best for you at home. Then, when your child gets started on the very first dose of IV meds, ask the nursing staff to help you adjust it accordingly before you leave the hospital. For example: My son needs an IV med every 8 hours. I wanted the schedule to be 7 AM, 3 PM and 11 PM to allow for school and a reasonable evening dosing time. So, we had to do some shifting of the timing in 30 minute increments to get it to that schedule before we left the hospital because his first dose had been started at 6 PM (when the PICC was placed).   

5. Find out about the "comfort services" right away. Once you get settled in, find out where the sheets, blankets, towels, popsicles/ ice-cream, ice, showers, microwave, fridge, vending machines, family resource center/ library, computers, internet access, food and coffee are located. Also find out the visiting hours as well as when the hospital cafeteria and coffee shop opens and closes. You might also ask about the play room, Child Life Specialist visits (for art, playtime, etc), special events like hospital bingo, clowns, games, and if they participate in the "Little Wishes" program.

Also ask about passes to leave the hospital for a few hours. One year, I took my son to the zoo for a couple of hours which was close by. This year, my daughter got a pass to attend her uncle's funeral and we also managed to sneak in a quick visit home so she could see the dog for a few minutes. These little things all add up to making the hospital experience as good as possible. 

6. Bring good people skills with you. Having a child in the hospital can be a stressful, scary, life-disrupting and challenging experience. Things go wrong. People aren't always nice or even helpful. We can get mad and frustrated. 

In the midst of all this, try to remember that the world of medicine is really based on people. And people tend to go the extra mile for people they like. There is an art to being an effective advocate for your child; it takes a bit of finesse. You want to come through as authoritative but not demanding; friendly and cooperative but not a pushover; and as a team player. It can be a fine line at times. 

It helps me to remember to be assertive but not aggressive; there's a big difference. Being aggressive is telling others what they have to do and is seldom effective unless you’re the boss or the president. Being assertive is telling others what we need.

Aggressive: You need to move my kid away from that other kid who is coughing.
Assertive: I would appreciate it if you could move my son away from the kid who is coughing so he doesn’t get sick, too.

Aggressive: You need to get my kid's PICC line in today.
Assertive: I am concerned about needing two procedures. My daughter doesn't handle pokes very well. Can you please help me figure out if there is any way we can get this done today?

Human nature says that when one demands, the other resists so aggression and demands don’t usually get us very far. But sharing what we need and phrasing it politely will generally result in cooperation. Note that this is true with our kids and spouses, too. 

7. Have normal expectations for your child's behavior. Our child might be scared or in pain or just downright grumpy. Besides being in our own emotional funk, we can feel so bad for the kid that we might excuse unacceptable behavior. Nurses have shared stories of  kids who are rude and some who are downright abusive to hospital staff while the parent sits nearby and does nothing. 

Having a handful of effective parenting skills is really essential when your child is at the hospital. Here are a few to get you started:   

Use choices:"Would you like to watch TV while you get your procedure done or shall I read a story to you?" "Would you like to treat the nurse nicely or shall we step out of the room for a few minutes while you calm down?"  

Set limits with enforceable statements:"I'm happy to bring you some ice cream when you ask me nicely." 

Be a good example:Model respect, good manners, calmness, optimism, and a "we can handle this" attitude. 

If your child is struggling with fear and anxiety, ask for a Child Life Specialist to come work with your child. They are absolutely amazing and have helped both of my children (and me) get through some tough medical experiences. 

And, don't forget rule #1: Take good care of yourself during this time. It's perfectly okay to leave your child's bedside to take a quick walk outside, grab a latte, or call a loved one for support. Good luck with your hospital stay.