Down sizing trach

[jarner79]

Question. I know the answer but want the reassurance I am correct. Why would a doctor down size a Tracy from an adult 5.0 to a pedi 4.5 then down to a pedi 4.0? Wouldn't that be they are trying to get rid of the trach completely? My son needs a 5.0 adult for the length. I saw the scope myself last year. This doctor where my son currently is down sized it twice without informing me and I found this all out today when an "incident" happened today where his trach came out and a new one wouldn't go in and he could not breathe! The nurses finally got it in after about 8 minutes and blood everywhere! I am so upset I don't know what to do!

[IzzyB]

Your son just came off the vent recently right? They may downsize it because the leak no longer matters and your son might start breathing around it on his own. I know as soon as we get rid of the vent the ENT said they would downsize. If they get it small enough they can use a speaking valve.

Now the length, I don't know why they would reduce the length. My doctor refuses to move my son back to a Neo, even though that is what we want because he throws up less on a Neo than a Ped.

[Ainsley's Mom]

Is the doctor experienced with trachs? Maybe he wasn't thinking about the increased risk of accidental decannulation and was just trying to get by with the smallest trach possible. But yes, there must logically be a reason he is downsizing. I hope you're on good enough terms with him that you can ask for an explanation. I know you've had concerns that they are trying to move toward decannulation to get him out of there. You are his mom. Don't they need to tell you what they are doing and why?

It's curious that it was so difficult to get the trach back in. With a mature stoma like his you sure would expect it to slide back in easily. Especially since he's been recently downsized. Is it possible it was out for a long time and they didn't realize?

[jarner79]

Yes he has been off his vent for a few months now. The thing that has now made me very uneasy is I was never even informed about down sizing, and even consulted with about it. I found out when it all happened. I was right there and wasn't allowed to do anything.

I do not understand why they would go back to a pedi. It is way too short. Derrick has always decannulate himself numerous times. With his arching of his head and back it will slide right out. He can't control his muscle tone and his hand get up on the trach, and pop, out it comes. He has done it 4 times in the last month. Mow I know why! Because he went back to a pedi 4.5. Length is a major difference. The adult 5.0 bivona is 60 mm length, the 5.0 Bivona Pedi is only 46mm length, the 4.5 Pedi Bivona is only 46mm, and the 4.0 Pedi Bivona is only 41.0 mm.

The RT who was trying to get the trach back in was shaking so badly, but I wasn't allowed to do anything as he turned blue and couldnt breathe. I then moved in after it was in and he then calmed down, and I took off his bloody ties, and put new ones on. Three nurses tried helping me by reaching in the hold the trach, and I told them I can do with my eyes closed, my daughter on my back with nobody needing to help me. I feel this staff that was there was very incompetent and makes me second guess him being there now. Has this happened before and I was not told?

I have called this morning and of coarse the Head doctor is not in yet. What a surprise. The Head RN of the floor is of coarse out this week!

I am so lost, I don't know what to do. Do I bring him home knowing I cannot get PDN again, and loose my job which I need? Of coarse I would love to see my son with no trach. But NO Doctor should decide this on his own and do so without consulting his mother prior to anything being done!

[tbhartman]

i would wonder why they didn't do a scope (or did they) to see if the trach was the right length? i'm not comfortable upsizing or downsizing a trach w/o one! Maybe he can get a custom inner length so he can downsize? i'd be frustrated... i hope you can get answers soon!

[Christamae]

Sounds scary! If they are going to continue downsizing, they should get a specialized trach for length. I have a bivona peds 5 with specialized (custom)length. I would mention this.