Possible Decanulation or Reconstructive surgery of the Subglottic Stenosis=[
hello everyone, as all of you know im alexanders mom, we have been threw allot, and when the doctors say possible decanulation its like,OMG=[HOW would we ever live without a trach. Its like hey if he has trouble breathing we all know that its just a tube on his trach an the vent is ON, AND WITHOUT THE TRACH THEN COMES INTUBATION! well alex had a doc's appt on thursday and he said that alex is doing very good, and that he needs to see him in the OR. with all 3 doctors. Ent, digestive,and pulmonary, to do a bronch an other scopes he also said there can be a possible decanulation or a recontructive surgery of his subglottic stenosis. i am very afraid of whats coming. I thought that in order to decanulate they kid had to have his trach capped, Does in it? Well alex wears an HEM or another name for it is a Portex thats what he wears 24/7 but its not caped. i dont know what to think, all i know is that im very scared... he is scheduled for july 19... any suggestions ? please leave your comment.
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hi
im scared to death my son is now coming home may 10 with trach,oxygen,feeding tube and i have two girls at home,they are triplets girls all have bpd and one daughter has feeding tube will not take all her bottle and pulls out button tube in stomach was so scarey ,my husband knows how to put back in,thank god jesus.other daughter hand brain bleed and is ok and of of oxygen now ive been trying to talk to somebody about trach. so scared.thank you god bless all
understand same situation- supportive
I certainly understand your anxiety I too am heading that direction with Ally. She does wear a cap up to 6-7 hours a day sometimes and they have done sleep studies in the ICU capped to make sure she will pass. SHe too will have a brocnhoscopy in two months to check her lungs and than decannulate. I am ready to cry. I am a nurse too but scared of failure. Good luck and email me any time or call tkdeso@yahoo.com We can get through this together
Hi
Does he need oxygen?
That is wonderful but very scary news. Why do u have to wait until July to do the bronch? I would be very excited! What hospital do you use?
Congratulations and we wish you well!
thanks for the comment=]
Hello this is alexander's mom Nellie. We live in TN and we go to Vanderbilt Childrens Hospital, the schedulaler called me today to tell me the date for alexander EGD thats what she said its called but in that procedure they are going to do the bronch and look into his stomach and lungs . He had sever reflux and he requierd the Nissen Fondoplication. He had it donr laproscopicly=[ i was very afraid but everything went well. Im hopeing we get good news this time. You know i still dont understand why they told me there could be a possible decannulation, if alex's trach is not even capped. It never has been. Doesn it have to be capped first in order to decannulate? Well it is going into the OR on July 26,we have to be there at 5:30am and he is going in at 7:30am.=[ well i have to go take care....