I am sure you all have probably discussed this many times. But do you eat/ go to restaurants with others or family? How do you all in families handle eating out? We just haven't been going out because our daughter is TPN/J feeds. she says the smell makes her sick. Which i understand. but what do you all do? Say on a healthy child's b-day. We used to go out to dinner to celebrate, now we eat in. no big deal, but the new normal. what do you all do? just wondering.
thanks tricia
Hi there!
Yes I know this one all too well!
I have a drink! I have a card from PINNT ( the UK support network for enteral/TPN) with an explantion of the situation people are in with this type of feeding!
I know it is so hard especially if feeling ill and so some extra special celebrations with things your daughter can enjoy in some other way will be fantastic! A "cake" made of things she can cut into! Perhaps put some special things in a cake tin! That is a cake for her and her alone to enjoy whilst everybody else eats the proper stuff? That is not spoiling her but just a way of overcoming the pain and the problems we face!
Not sure if your daughter can manage anything by mouth? IF this is OK and safe perhaps a very very small piece of cake made into a smoothie drink? We did this during a meal out for my Mum's 7th birthday and the staff made me a special soup from a chicken meal I chose and then we had a cake for Mum and they came back with this small smoothie! I cannot do that now but am passed the stage of worrying about it all!
Hope you can find ways of working together to sort something out!
Take care
Chris
www.mypeggypeg.blogspot.com
A long answer to your question...I find its about coping in general..so forgive my longwinded response...We do eat out, actually often as my dear hubby tries to give me a break from the kitchen....my days can be very busy with physician appointments, child care: I do blood draws, her PICC line care, IV antibiotics, TPN hookup, medications ( home care nurse is here 5 days a week to premix, or draw liquid J meds, prepour our other two chronically ill childrens pill boxes and help with wet bed changes, assessment etc...but care is 24/7 so although she is a wonderful help it does not cover all the needs and I prefer to care for the central line myself and limit exposure as much as possible to her line) We average one appointment weekly which is always out of town an hour to two and a half away, have a tutor who comes to teach the younger two on homebound and I pick up the older two (one a teacher with visual issues does not drive and lives at home the other in high school) All of our children during the school year also participate in church religious ed. as a student or volunteer ( I teach my youngest's class) and the kids are all in church choir which rehearses one night a week, youngest two also altar serve frequently ( including my TPN'er who wears her TPN back pack when altar serving). We've learned many tricks along the way, mostly from other parents and Oley members! my TPN'er is permitted a very small amount of meat and fluids she can vent or drain from the G port of her GJ. Food worsens her gut issues, bacterial overgrowth and autoimmune disease from the small intestine infections which is one reason we are desperately hoping the next surgeon we consult will agree to do sugery and an ileostomy and separate jejunostomy tube. We believe and hope that if she had an ileostomy, her colon which works little if at all would be bypassed, and the motility in her small intestine improved enough to reduce the small bowel intestine infections, lessen the autoimmune flares and in general improve her health. We do believe food in general makes her intestinal problems worse and contributed to damaging her bowel motility. We are hopeful she might once again tolerate J feeds of Elecare, an elemental formula AND be permitted to eat a small variety of feeds that she can just drain out the larger G tube. The GJ tube does vent/drain the stomach but not as well as a single Gastrostomy tube would. We did find a GJ low profile button did NOT work well at all to vent or allow the stomach contents to drain which is why we went back to the long MicKey GJ tube which my daughter has connected to continuously drain her stomach. That has helped her enormously to not be nauseous all the time and avoid a large amount of vomiting. We also find IV zofran in a slow push over a few minutes helps some too. We have also found that my daughters symptoms of nausea and vomiting are much worse if she has a small bowel bacterial overgrowth infection and unless we keep them under control her symptoms are awful and uncontrollable..which is how after years of treating with cycled enteral antibiotics when they no longer worked she has gone on to IV antibiotics , TPN and strict avoidance of any sugars, sugar drinks or carbohydrate foods that rapidly feed that bacteria and make her much worse. With all that our daughter enjoys eating out and looks forward to ordering her meat and sugar free drink (diet coke, tea or diet root beer) all of which she vents into her gastric vent bag. Recently a dear online friend began making pretty little cover bags to wear over the urinary leg bag our dd has hooked to her gastric port. Now she is very pleased to wear her Tink cover bag or a color that matches her outfit. She does get nauseous with smells at times, we carry ODT or orally dissolving zofran tabs and she "toughs out " when not feeling too well as much as she can. Having three who are chronically ill and all have issues, pain, GI, asthma, etc they over the years have tried hard to protect each other and even my husband and myself and will often muddle through in situations where they do not feel well .We have had puke in churches, restaurants and lots at home....as we say puke happens for all three of them..but they try hard to make it to the bathroom and not "ruin" everyone else's meal and we try hard to set the stage before eating anywhere that anyone who is not feeling well...has gotten meds, and in my dd case is venting well. Hope this is of some help...yes we do have our own normal for sure, but we did find ways to still eat out, otherwise I am afraid several nights a week the rest of the family would go hungry! LOL
Lee3
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