Alethia
01-08-2005, 06:40 AM
http://www.tracheostomy.com/iB_html/non-cgi/emoticons/biggrin.gif Hello. I live in Scotland and have a 6 month old baby called Angus. He has Ellis-van Creveld syndrome which you can find out about here My Webpage (http://www.crydee.plus.com) if you like. It also goes into his story. He had his trachy doen just over 2 months ago and it's going OK. He's on a Pulmonetic LTV, has rigid, 4mm, Portex TT's though I'm going to ask his consultant if there's any reason he can't change to a Bivona uncuffed. He started vomiting several times a day during the week he changed to the LTV from the ICU ventilator. Before this he had not vomited once. I know reflux can start out of the blue, but he'd been in ICU for 4 months and not been sick at all during 2 OHS, cardiac cath tests, numerous pulmonary hypertensive crises and all of that. His pH test was inconclusive too. I wonder if the movement of the rigid tube in his neck makes him vomit sometimes, so I was hoping that if there's not reason for him not to have one then a Bivona may reduce his vomiting. Have any of you experienced similar?
He's in the LTV ward at the kids hospital now. We can't have him home until a care package has been arranged and that will take many more months.
We change his tube every 2 days, sometimes every day because he has very thick secretions which stick to the sides of the tube making it progressively narrower. He has saline nebs 4 times a day to help keep them more fluid. ::touch wood::: he's not had a chest infection yet (let's hear it for expressed breastmilk!) so his secretions are clear. He has velcro tapes and I have to place a Lyofoam pad around his tube to stop the flanges creating pressure blisters on his collar bones.
He, and my daughter (5) are my pride and joy. He is so brave and he smiles at everyone and is so giving. He learnt how to use his voice just before Christmas - it was the best present I received this year. I hadn't realised how much I'd missed hearing his baby sounds until he started making them again. Â*http://www.tracheostomy.com/iB_html/non-cgi/emoticons/smile.gif
I would love to hear from any of you! Take care and I hope your babies/children are as well as they can be.
He's in the LTV ward at the kids hospital now. We can't have him home until a care package has been arranged and that will take many more months.
We change his tube every 2 days, sometimes every day because he has very thick secretions which stick to the sides of the tube making it progressively narrower. He has saline nebs 4 times a day to help keep them more fluid. ::touch wood::: he's not had a chest infection yet (let's hear it for expressed breastmilk!) so his secretions are clear. He has velcro tapes and I have to place a Lyofoam pad around his tube to stop the flanges creating pressure blisters on his collar bones.
He, and my daughter (5) are my pride and joy. He is so brave and he smiles at everyone and is so giving. He learnt how to use his voice just before Christmas - it was the best present I received this year. I hadn't realised how much I'd missed hearing his baby sounds until he started making them again. Â*http://www.tracheostomy.com/iB_html/non-cgi/emoticons/smile.gif
I would love to hear from any of you! Take care and I hope your babies/children are as well as they can be.