Trach surgery scheduled...

[BlaineL]

Looking for advice, experiences, tips and tricks from PALS and CALS. We know this is a lot so we really appreciate any/all info you're willing to share. We hope the answers to this post will also help others who might be on the same path. I've searched the previous posts on the forum and appreciate all the past insights.

Background information. PALS 74 years old, bulbar onset diagnosed 2020, first symptoms 2018, currently mobile (uses cane/scooter), currently night time only BiPap. Decision has been made to opt for tracheostomy in order to alleviate experience of UPPER airway type obstruction due to progression of symptoms and loss of tone in the upper throat/mouth area. PALS currently has diaphragm and lung function that will allow for having a tracheostomy for a period of time PRIOR to requiring 24/7 mechanical ventilation. We are trying to be well informed from both doctors and real people who have “been there, done that” prior to surgery. Many thanks in advance for your valuable input!

Questions…

#1 top questions you wish you would have asked doctor/nurse/rehab prior to discharge

#2 top tips/tricks for CALS when you get home and are on your own caring for PALS

#3 top things that went wrong that you wish you had known about before they went wrong… and what did you do to resolve

#4 share your real life example of your progression and day to day experiences if you elected trach for similar reasons… how long were you able to remain on limited vent support, did this assist with breathing as you anticipated, did you use suction/cough assist more/less than expected, was the daily care more/less involved than expected and why, how much additional help did you receive… any real life experiences are helpful even knowing that we are all different! Thank you!

 

[lgelb]

Hopefully PittsburghGal will chime in -- her husband had a trach but not 24/7 BiPAP, for years, as I recall. Essentially for that period, you are caring for the trach site while managing BiPAP as most here do. I will caution you that esp. with bulbar onset, no one can equate their time before 24/7 ventilation with anyone else's.

If you have not seen it, I would review alsfrombothsides.org


Best,
Laurie

 

[affected]

Does anyone know how Diane is doing?

 

[jonico]

Hi Blaine,

You are asking all the right questions, but answering them in detail would take paragraphs and paragraphs and then your situation could be entirely different from ours and you'd need to approach things in an entirely different way. Answers for all your questions are in fact already here in this forum. Just search various key words and you will learn a great deal from those who have gone before you.

So, my personal/brief take on this is as follows... A Tracheostomy is major surgery and the recovery will definitely be varying degrees of challenging for your PALS. My wife required about a week of rehab at a rehab hospital after the operation... that after a couple days in the ICU. I'm not sure if that is often the case, but again, I imagine some fare better and some worse. The surgery and recovery set her back physically, so that is a possibility for anyone with this surgery, especially when they are already physically compromised as is the case with ALS.

Post-trach, it's impossible to say how long your PALS will be able to avoid 24/7 venting, but it will be inevitable for a 74 year old with bulbar onset, and caregivers will need to be prepared for 24/7 care/attention when that time comes. It could be weeks, months...or? My wife was able to get along with just just an oxygen mask over her trach opening for a few months while requiring the vent overnight. It wasn't long before she needed to be on the vent all the time. I would say that the post-trach daily care was more involved in pretty much every way than I ever could have imagined before, and the care was already pretty intense pre-trach since we were 2 1/2 years post diagnosis at that time. It's just intense my friend. Intense, but doable.

That being said, I want you to know I think it is great that your PALS wants to go with the trach. With strength and determination on everyone's part, including your PALS', and the right support from family, friends, aides, nurses etc. it can be a pretty sweet (but often challenging/difficult) journey. I wish you all the best. You sound like a very loving support for your PALS.

Jon

 

[BlaineL]

Thank you very much for your thoughts. All the best to you all.

 

[pittsburghgal]

Blaine,

My husband was first diagnosed with possible ALS in 2011. He was limb onset (arms) and had very slow progression for many years.
He was asked by his pulmonologist early on whether he would choose a trach/vent when necessary and he said that he did not know. He had a bad fall in the summer of 2015 which caused head trauma and a brain hemorrhage. He developed respiratory failure and would have died if not trached and ventilated. Since he was still able to walk, talk, eat prior to this, I made the decision for him to have the trach. and PEG tube.

He was able to be weaned off the ventilator after about 3 weeks. He was in the hospital for 10 weeks. When he came home he was very different from how he was prior to the fall. I don't know whether this was from the fall, the surgeries, the long hospitalization or a combination of them all. The weakness in his arms had progressed to paralysis. He was unable to walk or eat/ drink so was on PEG feedings for the rest of his life. I did not find the daily trach care to be difficult but this, in addition to all the other care he needed (which I did alone) was very hard, particularly because it went on for 5 years.

My husband used BiPap (using the trach) during the night the entire time. He never needed to be vented and honestly I hoped and prayed that he would not. If your PALS is on a ventilator, someone will have to be there at all times. I really do not think this is possible for one person to do.

It is easier to do suctioning through the trach. The PALS can speak with a speech valve attached to the trach.

Initially we went to an ENT doctor to get his trach changed but traveling became so difficult that I started doing it myself, which is not hard at all.

Make sure you get an ambu bag. My husband once got a mucous plug and could not breathe. I was able to ventilate him with the ambu bag attached to the trach until the ambulance came (20 minutes). He would have died without this.

Sharon

 

[BlaineL]

Sharon,

Thank you so much for the ambu bag tip. We have one and I will be certain all family caregivers are up to speed on it. So much we all need to be aware of.

As an update to anyone looking for info and reflection on the tracheostomy decision here is an update on PALS... Note my comments regarding PALS background on my first post.

Surgery on Thursday mid day
ICU for recovery, expected to remain on full mechanical ventilation for minimum of 24 hours
Friday mid day was taken off vent for initial weaning to attempt to eventually return to pre-surgery level of support
Did wonderful : )
Was able to remain off vent for the remainder of the afternoon/evening
Walked around room a bit with walker and caregiver assist
Uncertain what Friday evening sleep vent support will look like

At this point it appears that a trach surgery chosen prior to emergent need was a good choice. Hoping and praying that PALS recovery continues and that this surgery affords a period of time with easing of restricted breathing symptoms.

Thank you again to everyone being willing to share personal experiences which allow others PALS/CALS to make a more informed decisions on their own futures!

Best to you all.

 

[Diane H]

Hi Tillie and all, If I am the Diane you asked about, I am still out here and doing ok. I am now at 36 years since diagnosis and bewildered by that! I can still move my left hand just enough to use a mouse if my fingers are taped down on it and the moon is in the seventh house and Aquarius is rising. Other than that I don't have any functional movement left. I am just now getting into slurred speech if I don't make the extra effort to enunciate carefully, sound hoarse, and use a voice amplifier in social settings. Swallowing requires soft foods and I am getting more aches and pains. After 17 years, the trach and ventilator are the least of the daily hassle! In short, my ALS is still progressing at a snail's pace but that snail is one persistent little ~#%&!

 

[affected]

@Diane H yes indeed I was asking about you, I'm so glad to see you post.
I love that despite all you are saying, you can say it with such elegant humour.
Thanks again for your ALS from both sides website that has helped and continues to help countless thousands of PALS and CALS navigate things.

 

[JimInVA]

@Diane H - I echo Tillie's comments. You were SO helpful in our journey simply by providing helpful information and choices to look at and consider. You were remembered often by Darcey who LOVED her Liko Hygiene Sling. So glad to hear that you are able to "keep on keeping on"!

My very best...

Jim