SilverSlipper

Thanks for all the replies. We're home! We came home yesterday and I immediately went to the store. It was one of those trips where I had no list or menu in mind. I had little time to plan and just bought meat, veggies, fruit, milk (whole and full cream) and cheese. (We live 30 minutes from a decent store).

I am actually grateful that the kitchen staff refused to guarantee it. I think it's ridiculous, but I'd rather people be up-front and tell me they can't do it than to just guess at things. I do think it's possible to cook gluten free though. Aluminum foil and steamer bags can do wonders as long as the prep/cutting area is safe. It was an odd situation - the doctors and dieticians maintained that it could be done, the nurses were uneasily caught in the middle and relaying the concern of the kitchen, and the kitchen staff personally told me that they weren't familiar with what to fix and for me to please double-check it. (Most of the problem was due to concerns about preparing - my daughter is sensitive to cross contamination). No matter who spoke to her, my daughter's answer was always a polite refusal. (She wasn't upset or mad, she simply refused to eat unless it was sealed and she personally checked the ingredients).

The other frustrating thing was that I never knew what was going to come up on her tray. (I kept ordering, hoping for individually wrapped things. I would eat her tray if it was edible. The food there is not too bad, but this was bland, bland, bland.) We went in on Friday, but didn't receive meals until Saturday (through Tuesday). Some days chocolate milk was okay, other days it was not. (She refused to drink it anyway since she didn't recognize the brand and she's been glutened by chocolate milk before). Ranch and Italian dressing caused confusion and some days they would send one, other days they would say Ranch wasn't safe and would only send Italian. I always asked for pudding cups and margarine, but neither was determined to be safe. If they weren't sure if an item I circled was okay, they marked it off and sent the tray without it. One meal was only steamed cauliflower and a salad. The gift shop had cheese popcorn and yogurt. We lived an hour away from the hospital, so I couldn't easily leave.

Apparently, during removal the appendix ruptured and that is what they are blaming the extra pain/discomfort upon. She is currently pain free but moves slowly and carefully. She is 11 yrs old and weighed 58 lbs when she went in. She now weighs 54 (although I'm sure some of that is from mild dehydration which I could tell she had when we left).

She is drinking a lot now and my husband made spaghetti and garlic bread for dinner last night (she ate about 1/3 of it). I have wonderful things planned to cook today so I feel good that we're on the upswing. I still plan to write a nice note and let Children's know of my experience. If nothing else, they should be able to keep frozen meals on hand or shelf-stable soups/food that could be safely prepared.

Thanks for everyone's comments. I appreciate them and am SO happy to be home.

Most hospitals have patients representatives/advocates that you can lodge complaints with. See if they have that there.and contact them ASAP?

Your daughter should be able to eat bananas or applesauce which are usually not opened..and therefore safe? I find it maddening that they can't safely feed your daughter!

Yes she can eat those. She has had applesauce. It would be good to have actual food though. They want her to have a bm before leaving. I plan to talk to Dr today and tell him she wont because she wont eat until we are home. She wants food but I cant get what she wants here.

A friend went to a health food store and an employee helped her. I have doughnuts and chix nuggets meals (gluten-free). The nurses have been upset and encouraged me to write wheen we get home.

We cant leave early. They wanted to send us home today but her recovery is slower than expected. She cant walk yet and hasn't felt like eating. I hate that you had problems too.

(Sorry typing on my laptop which means I'm prone to mistakes)

Karen - her carrying medication (without a label) was what bothered me. I wouldn't want anyone to see it and think she is carrying something illegal. The medication is actually fairly harmless (IMO). My other daughter takes one daily in the morning to keep tummy aches from developing (suspected IBS). So, yes, I do trust her to take it with her and not take it unless necessary.

I will probably ask the pharmacy to give her a small dose/bottlt to carry as another poster suggested. I may go ahead and ask her GI to write a small note verifying she has Celiac Disease as well.

Thanks

Hymox is an IBS/IBD medication, does she have either one of those or was it rx'd because of the severe cramping that she gets when gluten is injested? My son has this rx'd but he is an IBS, most likely IBD, kiddo but can not take it since he has severe dysmotility in his intestines. Hymox stops the intestinal spasms, and it WORKS but for us it literally stops the intestinal tract...not a good thing when you hardly have any movement to begin with.

I would never let my child carry any type of medication that is not in its orginal container-anywhere.

I was told IBS basically came with a Celiac diagnosis although the comment may have been directed towards my child only. She takes it due to severe cramping that is literally crippling during a celiac reaction.