Posted by Marsha on 3/5/2008, 2:37 pm
69.114.222.188
Good Afternoon everyone, I am new to this organization, but find it so helpful. I wish I knew about this long ago, when my daughter and I were really going through it. Anyway, thanks for the opportunity to share. My daughter had her trache tube, and feeding tube removed for approximately two years now and the holes are still opened. When they removed the trach tube, I know they gave us specific instructions regarding covering the hole when speaking, or coughing, etc., but no matter how much I keep reminding my daughter to do so, she just ignores me, and it is frustrating me so much. We are constantly using bandaids (I swear we are probably the hugest financial supporters of the bandaid company), and whenever she forgets to put them on (which is daily), mucus is still protruding through the hole. We went to the ENT a couple months ago, and they said not to worry about it because if they surgically close it up, there is a chance that air can create like a pocket where the hole was and more complications, such as putting back the trache tube can arise. We have come such a long way, but I keep telling Diamond (my daughter), that now she has to do her part. I guess she has been used to approximately 7 years of nurses & mommy basically doing everything for her that she got lazy. Can anyone give me some advice? Its frustrating and at times I feel sad/sorry for her because she told me a few months ago, that some of the kids in her school sometimes call her "holey neck." I know how cruel kids can be, and I keep trying to reinforce to her that she has to cover her neck when she talks and etc. I even bought her cute little pocketbooks, mirrors, wipes, cute little cartoon bandaids, but she pays it no mind. Please help, I am literally going crazy.
