Botox in larynx - ta muscle?

AngieG076 · #1 07-08-2012, 12:49 AM

Hi All. Sorry, it's been a while since I've been around. Miss all of you!

Sean was decanned Sept. 2010 after a double stage LTP. Did well the first year, despite his bilateral vocal cord paralysis... but, since this past December things have gone downhill pretty quickly. Saw our ENT, and he said that Sean's vocal cords had learned to move again... but, are reacting the opposite of what they should. He was bronch, EMG testing on his vocal cords, botox in the TA muscle, and yes.... re-trached "temporarily". I am terrified of what we are going to have to do to help this kiddo breath. ENT says that his TA muscle is sending the opposite signal to the nerve that should make the vocal cords open up when he gets excited, runs, laughs, cries, and sleeps.. so it is sending a signal to close the cords during that time, instead of open them... and that is why he is all of a sudden so much worse with his worked breathing, retracting, gasping for air and stridor. supposedly the botox should paralyse that muscle from sending the signal for the cords to close during those times, but I am so so scared, because I cannot find anyone who has had this done.. or at least something similar. This poor kid has gone from being decanned for over a year and a half, chatting away.. and being very very loud. To having his trach back in, with swollen vocal cords from testing, and NO voice with having to eat and drink slower because of fear of aspiration. He's going to get re-scoped on Friday to see if the Botox worked. Has anyone had any experience with this? Or something similar. This is all new and terrifying for me.

~Angela

blessedwithtwins · #2 07-09-2012, 11:22 AM

Hi Angela,

About three years ago that same procedure was mentioned for my daughter, when they thought one of her vocal cords was paralized, but as I understood it the purpose was to make it bigger so that the functional one would be able to come to full closure. She's never had it as we are still working on airway, haven't gotten there yet, but apparently is not that uncommon and sounded pretty safe.

Sorry that I cannot be of more help. What a big adjustment you are having to go through...be strong!

Silvia

Christamae · #3 07-09-2012, 02:18 PM

botox temporarily paralyzes or weakens the muscles in an area. so even if it gets worse the effect 'should' go away after 6 months or so. I have had botox in my legs to help with muscle cramps and my neck/shoulder to help with contractures.

blessedwithtwins · #4 07-11-2012, 11:02 AM

Yes, that's how I understood it as well, they said it would only last for 6 months.

AngieG076 · #5 07-13-2012, 12:33 PM

hi! thanks for the replies.

sean got re-bronched this morning, and looks like the botox worked a bit, and dr. jacobs wants to see how he does with the trach capped. maybe, possibly.. it'll help him.. but, my instincts are telling me that there is more to be done to get him to be okay. possible lateralization or another graft to make the trachea a little bigger and push the cords open more. this is all so scary! thanks for being there!

another crazy question here... since he is coming home with the trach in. the hospital wants to re-train us in trach care. it has been a year and a half, but we took care of him totally on our own for the past 4 years with out a problem. how can i get them to bypass this whole re-training procedure, and get us home as quickly as possible? we never had nursing shift care. just had a nurse come over every 2 weeks to change the trach with me. i feel like they are over-doing it? we already know what to do. but, they still want me and my husband to stay here for another 3 weeks to prove that we know what to do! we both work, and sean has a twin sister.. so this all seems impossible, and un-necessary. help.. what can i do?

Ainsley's Mom · #6 07-13-2012, 12:52 PM

Quote:

Originally Posted by AngieG076

....another crazy question here... since he is coming home with the trach in. the hospital wants to re-train us in trach care. it has been a year and a half, but we took care of him totally on our own for the past 4 years with out a problem. how can i get them to bypass this whole re-training procedure, and get us home as quickly as possible? we never had nursing shift care. just had a nurse come over every 2 weeks to change the trach with me. i feel like they are over-doing it? we already know what to do. but, they still want me and my husband to stay here for another 3 weeks to prove that we know what to do! we both work, and sean has a twin sister.. so this all seems impossible, and un-necessary. help.. what can i do?

That's ridiculous! I'd make a stink. There is NO WAY that should be required. At the most maybe a 1 hour refresher if they think something has changed since the last time he had a trach. This sounds like the person who says you need the training doesn't know he was already trached. Crazy.

AngieG076 · #7 07-13-2012, 01:24 PM

Quote:

Originally Posted by Ainsley's Mom

That's ridiculous! I'd make a stink. There is NO WAY that should be required. At the most maybe a 1 hour refresher if they think something has changed since the last time he had a trach. This sounds like the person who says you need the training doesn't know he was already trached. Crazy.

thanks susan! i am so so glad that i'm not totally off base here. thank you!!!i feel like i'm going crazy. i think what happens, is that i know alot more than i think i know, and i work best on instincts and hands on, as opposed to explaining what to do, like i memorized it from a handbook. lol. he had a serious plug two nights ago, and the respitory nurse and picu floor doctor didn't know what to do! i told the nurse that his trach seemed plugged, and sean was telling us himself that his trach needed to be cleared! and then, they were like.. we'll, maybe we should change his trach. yeahh.. duhhh.. i went to a trach changing class today, and the woman asked me why they sent me down. and i actually told here what had happened two nights back, and she just laughed. and i said that i think some of their respitory nurses just mighhht need this class.

i just spoke with our picu nurse and she is making a bunch of phone calls to see how to straighten this up, to maybe staying a couple extra days.. or a week. we are doing a swallow study on monday, so we are definitely staying over the weekend... but i think 3 weeks is an extreme. i think the picu nurses don't know much about trach care in general.. so they think that us parents know less.. when in fact, we know more! blah.

blessedwithtwins · #8 07-15-2012, 12:42 PM

Don't think you are off base here, I think what you are going through is hard enough, and three weeks is outrageous, I hope you'll get some support and get out of there soon, I have not doubt you are more qualified to care for your son's tracheostomy than any of the respiratory nurses...This makes me so upset, I have twins as well and we didn't use nursing support either because all of the nurses they sent where undertrained and put my daughter in the emergency room for suctioning too deep and causing trauma to her airway...we almost lost her. They trained my husband and I for two months before we could take her home but they would only give nurses and 8 hour training course. On top of it, when my daughter was back at the hospital with damage they didn't believe the nurses were suctioning too deep and blamed us, so we had no choice but to get rid of nurses and take care of her on our own, to prove who was at fault. In seven years she never EVER ended up at the hospital again for trach care related issues.

I'm with Susan, make a fuss!

Good luck,

Silvia

principe · #9 07-16-2012, 12:40 AM

Yes, make a fuss.

AngieG076 · #10 07-19-2012, 02:43 PM

thanks everyone! we definitely showed them that we knew what we were doing. lol. had to do a 24 hour stay with both me and my husband taking care of seany on our own.. and after a couple hours.. they already knew we were well equipped to care for him. got home on tuesday. yay!!!! we meet with the nurse tonight to come up with a plan. looks like the trach will be in for a while. trying to get nursing care set up for school.. as he is starting kindergarten in september. hopefully that all goes okay. (( hugs to you all! ))