Nutrition is an important element in managing cystic fibrosis, so it gets a lot of attention during hospitalizations. At times hospital food can seem less than desirable, but the hospital dietary staff will work with you to make sure you get enough to eat. Although the admissions packet will include instructions for ordering the meals that will be delivered to the room, don’t be afraid to ask for help in filling out the order so you get the best meals possible.
It will take some time to get the in-room meals that you actually order yourself up and running. It’s a good idea to bring a supply of snacks on the first day to tide you over until the food you ordered yourself arrives. -KT
Supplementing the Menu
The hospital staff and CFFC provide patients and families with options beyond the 3-meal-a-day routine. Always remember to let the care team know what you or your child is ingesting (food and drink) outside the regular menu. There are times you may have you wait to eat if a procedure is scheduled.
You can order snacks to have on the floor in between meal times through the dietary staff. There are also often things available on the floor – ask the staff; don’t be shy. The nurses stations at both Highland and Strong also have menu books for ordering food from local restaurants; many of which will deliver to the hospital.
The dietary staff at Highland is good about working with special diets, and extra portions. – KT
- The pediatric packets at Strong has a meal voucher that can be used in the hospital cafeteria during that first day or whenever you want to use it. Check with staff regarding the hours for hot food.
- The adult packets at Highland include coupons and discount cards in your packets for a few area restaurants. CFFC did not provide meal voucher in the adult packets since the cafeteria options at Highland are fewer than the items offered on the in-room menu.
NOTE: CFFC is working on expanding the coupon options. Please email us at firstname.lastname@example.org if you have suggestions or connections to a restaurant in the community that might want to be added to our packets .
It can be nice to actually get out to have a meal in a different environment as long as the patient is feeling up to it. When appropriate, you can arrange to have a “pass” to leave the hospital. This is permission granted by your doctor to leave the hospital at certain times in between treatments. Think ahead as it may take some time to negotiate the pass.
Bring your own snacks from home (or ask visitors who ask what they can do). I find it really helpful to have my own stash to fill in the gaps between meal times or for those late night cravings. – KT