Trach experience so far

[Jimi]

On September 13 I got a trach and feeding tube. I spent 15 days in the hospital. My wife stayed with me the entire time except the first night I was in the ICU. I don't know what I would have done without her. Being on NIV 24 7 for 3 years prior, I am surprised at how difficult the transition is. Both procedures were performed while I was under, in one session. Surgery went off without a problem and really wasn't really very painful at all.

The horror started the next day when I was in the regular room on the hospital vent. I was starving for air. The pulmonologist said that my blood gas numbers were a little high and that my saturation was fine and I would get used to it. The vent settings were so different than l was used to that I had to have a constant supply of Ativan and for the first time in my life, genuinely wanted to die.

For 6 days I was water boarded. Finally I had prewritten a message for the next RT who was going to visit begging for more air. She understood how I was feeling and immediately advocated for me to the pulmonologist. Finally the vent was adjusted to more comfortable settings. My blood gas numbers didn't really change. The next day the senior pulmonologist made a visit and informed me that my numbers were fine and he wasn't worried at all. I'm finally down to .25 mg of Ativan a day after that horrific experience. It kinda broke me. I had 42 blood draws. Since I have been paralyzed for years from the shoulders down, finding a vein was a problem.

I'm now working on humidifier settings, managing secretions, and getting used to how noisy the astral vent is. I will try to get back to a trilogy or a vocsn. The vocsn will be so much easier to travel with. Also have to find a caregiver capable of suction/cough assist with a trach. I taught my 13yo daughter, but my mom is to freaked out to even try. My wife is handling it all.

Not sure of the purpose of this post, but anyway, for anyone thinking of going through this, perhaps going through an ALS clinic would be a better idea. I don't know.

 

[affected]

Really sorry to hear how traumatic that was Jimi.
I think sharing this is important because most of us who have not been through this would have no idea of what the transition can be like, and what it would be good to know, and to have agreed on with the medical team beforehand.

I'm so glad you are home again and hope you can get some paid help for your wife so you all feel some control again.
Thank you for sharing, and please do keep this thread updated as you can.

 

[Samkl]

Oh Jimi, what a hideous experience! I hope you’re ok, and that you and your family quickly find a new equilibrium with this change. xx

 

[lgelb]

Though I am sure the encouragement for Jimi is kindly meant, just a reminder that this section (PALS) is a place for PALS to interact with each other. If a PALS wants to open up a thread to comment by CALS, that's what the "General Discussion" thread is for.

 

[Samkl]

Sorry, I wasn’t aware of that.

 

[Nikki J]

It does get confusing and I think sometimes we forget that when starting a post too.

Jimi thank you for sharing. I am glad you finally got listened to. Did you know the pulmonologist previous to admission?

 

[Jimi]

Thanks everyone for the comments. I didn't know the pulmonologist. Wish I had.

 

[swalker]

Jimi, Thank you for sharing your experience. It is very valuable to me.

I am sorry you had such a tough time and am hoping you get things sorted out quickly.

It sounds like the pulmonologist just was not listening at all. I hate that!

Steve

 

[Jimi]

Thanks Steve. It's getting better slowly but surely. We've found a more effective method for using the cough assist. Everyday improvements are made. I'm hoping in a couple of months this trach will feel normal.

 

[Jimi]

It's been a little over two months with the trach. Things have improved. I have the vent adjusted comfortably. We have the cough assist method working well. The suction catheter is no longer needed - I found it irritating. I don't use a humidifier. I get to much fluid/secretions using it. Using just the HME easily provides enough moisture for me. Mucus pulled out with cough assist is not thick. I don't bother my wife at night for a good 7-9 hours most nights. Most importantly, I haven't had any anxiety problems. I had to take so much Ativan at the hospital that it took me some effort to stop after. I haven't had any in a week and am back to my normal medication free life. For anyone considering a trach… it's a rough beginning, but in a couple of months things should improve.
I wasn't aware I had posted this where only pals can respond. I don't mind whoever.

 

[Nikki J]

Moved it.
glad things have improved somewhat

 

[swalker]

Thanks for sharing this. It is really helpful to me.

Steve