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!
Jessica...Mom to Derrick, 14 Years old, Cerebral Pasly, Spastic Quad, Seizures, Reflux, Non-Mobile, Non-Verbal, G Tube placed April 2005, Trached April 2008. Change to GJ Tube June 2009. NO MORE VENT ANYMORE!!!
Also mommy to my 5 year old Kailey, and stepmom to Jamie also 14 yrs old