Piglet has had many hospital stays in her young life due to her metabolic disorder called MCAD, its a kind of an FOD (Fatty Acid Oxidation Disorder) if you feel like looking it up. She was born with it and it will be life long. Before she was diagnosed with Celiac Disease 3 years ago, we were in and out of the hospital every 2 months, it was horrible. At that time we didn't know gluten and lactose were basically poison to her and what was causing so many hospital stays in the first place. When ever she gets a sickness like the flu and is throwing up she will always have to spend time in the hospital, so its normally at least once a year. Knock on wood, I think we have made it somewhere around 9-12 months now since our last stay. We definitely know how to survive the hospital with such a restricted diet and thought I would share some tips! Its been on my mind lately since baby #2 is on her way soon and since I am gluten and dairy free, I need to prepare to bring all my own food since I also can not eat a thing at the hospital. I also have a ton of food allergies so more restricted than Piglet is in some ways.
Most of the time we don't have much of a warning when we are heading to the ER with Piglet. So usually when one of us is calling the hospital telling them we are coming and to prepare her special IV fluids we are also running around the house packing a quick bag and grabbing snacks we have available in the cupboard and fridge. We know that will get us through a few hours at least. Items we tend to grab are: Gatorade, popcorn, crackers, cereal, and fruit. Quick stuff that has some carbs for Piglet if she can eat at all once the IV is in. The snacks are also for me because I can't eat anything there and there are no options in a vending machine. We are usually in the ER a very long time before being transferred to an actual hospital room upstairs. Most of the time poor Piglet isn't feeling well enough to eat much of what we bring.
If its not a planned trip and rushed like most of ours, we have to rely on family, friends, each other and food delivery. Usually one of us can go run to the store and get some snacks and easy meals. Luckily the new children's hospital now has a mini fridge and freezer right in the room along with a microwave so that has been really handy. Before they built the new hospital the old one had a family room that has a shared kitchen that we would use. Keep in mind all of those items are shared so they are not safe for people with Celiac Disease and are gluten free. But it still had the fridge, microwave, paper plates, and plastic silverware we could use. I would imagine most hospitals have rooms like that. At the old hospital they had a huge book of restaurants that would deliver food at all hours. This was a life saver because lucky for us there were actually places close by that had safe gluten free choices. Once we moved to the new hospital in a new location we no longer had that option so had to get more creative. Make sure to ask the front desk if they have a list of food places that deliver to the hospital. Its spendy but a life saver when you are tired and stressed out.
Rely on others to help you, don't feel bad about asking because you need safe food and don't want to feel worse on hospital food that will just make things worse and possibility cause a longer hospital stay! Like I said before, one of us can usually run to the store. If not I ask my mom to bring a bag of items we can eat since she knows what is safe. And just because I like having references so I don't forget things I have created a folder on Pinterest that lists a ton of gluten and dairy free items that are safe and taste good. If I need to tell someone what items are safe to buy, I reference them to look at that folder. Or tell them it has to say gluten free and dairy free right on the item. You could also create a paper folder to keep someplace that lists items you can have so someone can reference that if they need to.
Easy things to pick up last minute:
- Fruits and Veggies
- Lunch Meat
- Oatmeal packs
- Prepared Noodle Packs that you microwave
- Rice Packs
- Fruit Cups
- Beef Jerkey
- Nut Butters and Jelly
As for my upcoming hospital stay, it is planned since I am having a baby so I have the advantage to plan ahead and pack as much food as I want. I will probably mostly go off the list above since its easy food to bring and prepare. But I can also plan some fridge or freezer meals if I want and have those ready to go so I can just grab them as we run out the door. That way I can just microwave them at the hospital. I plan to make some crock pot meals ahead of time and then just break them up into smaller portions to freeze so its easy to bring with. Now to actually remember to grab them when in labor! I also plan to call the hospital so I can talk to a dietitian, maybe the hospital would be willing to order some gluten and dairy free items, it doesn't hurt to at least ask! This would be easier if it was an actual scheduled date vs a two week window where I may or may not go into labor. So easier for those of you that have a planned surgery etc.
Aside from the food side of being gluten free, always make sure the medical team is always giving you gluten free meds. Some are not safe, so make sure to verify they are so you don't get sick! You can request a wrist band that says Celiac Disease. Hope this helps a little!
Here is Piglet when she was younger at the hospital. Going around and around and around the children's unit at 2am