Sasha’s thread

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Sasha58

Active member
Joined
Jun 17, 2018
Messages
43
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
Florida
City
Broward
Hi everyone. Im new here just found this forum....My hubby was diagnosed 2016 when his right arm and hand began to lose function. Fast forward to now, and he is bed bound on a vent at home and total care.....Thats two short sentences, but in between those years of 2016 until now, we’ve had to deal with the emotions, the tears, the lack of help, learning how to deal with someone who said they never wanted to be trached or have a peg tube, end up with a trach and a peg tube, because at the time they were frightened, couldn't breathe, and was fully cognizant of their decision but in the heat of the moment wanted to breathe properly....He was on bipap but started retaining CO2, was intubated, got extubated and back to a vent then he said he wanted to breathe.....
I'm very fortunate that I have three daughters who moved back in to help. I also pay someone to come in five days a week for him so teresa and my youngest daughter look after him during the day and I do it on weekends with all the girls.... Occasionally, I have to admit I break down now and then because of the sheer responsibility... there was a time that my husband wanted hospice but they don’t take vented patients and the thought of him going on a trach collar which will not help him gives me chills and I will not allow it because he would be awake and alert
 
I moved this to your own thread

Sadly, welcome
 
Hi Sasha, I’m sorry to welcome you. My husband was Dx’d two months after yours. He no longer walks and arms are weakening steadily. Thank you for telling your story on the trache, I think it may help others.

I am glad for you having so much family help, that is important with a trache.
 
Welcome Sasha, what a nightmare :(

How old are your girls?
 
Welcome to the forum, Sasha! Wow, what a journey you already have behind you. You and your family probably know all the ins and outs of ALS. And many here know how you feel and will get you right away. Come here often to rant, vent or just hang with some of the most amazing people with internet access.
 
My girls are 25,27, and 29. One is In nursing school while the older one works with a nursing agency. The younger one is home with her dad and the Home health aide. I’m a RN and a surgical director for a very busy hospital. My day starts early and I have an hours’ drive home in the evening..... I’m tired, way down deep and so is my hubby.....but it is what it is....
 
Hi Sasha and welcome. My husband was also trached and vented so I know what that part is like. I didn't find this forum until 2 1/2 years in and it has been a wonderful resource for me, I hope you find it is for you also. Kate
 
Welcome, Sasha. I'm sorry you are here but glad you found us.

You're right, there is nothing else like the complete responsibility that you and your girls face.

Best,
Laurie
 
Hi Sasha, this is such a friendly place full of amazing and helpful people. It’s good you’ve found it and I hope you find it to be as useful and comforting as many of us have. It’s good to have a place to go (if only virtually) with so many people who actually ‘get’ what you are going through. Welcome.
 
So we were having the Home Health company visit since his last trip to the hospital.... He is so thin the edge of the trach rests on his collarbone cutting into the skin and causing a small wound. It has healed somewhat and reduced in size but there’s still a small spot that the nurse was dressing. Got home last night to find that the nurse just paid her last visit and there’s no more of the dressing she was using left.....so I’m back to doing the daily dressing on top of everything else....he says it doesn’t hurt but.....
 
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Hi Sasha,

Sorry I am late to the party. Welcome. My husband is also trached and vented. He will reach 8 years vented here in Aug. I found this place about 2.5 years ago, I think. I take care of my husband pretty much alone.

I used to have nurses, but insurance has taken away private duty, so I had to stay home and try to work from here while caring for him. I cannot afford a nurse. My DS, 31, is here on Friday’s since it is his off day. That’s my day for errands and also taking care of my folks. My DD, 23 is in PT school away from home. She helps when she is here.

I will tell you that I have learned from here, if your husband would chose to go off of the vent, he would be well sedated before they removed it. Mine has not chosen that yet. And here too I cannot get hospice due to the vent, but now I also cannot even get Home Health to visit.

As to his trach pressing on his neck. We were instructed and have always used a split 4x4 around the trach. I use two or 3 together. Not a dressing but it keeps the trach off of the skin. You can get them from your DME. Mine are a regular part of the order. I also have one around his G-tube as well.

Hugs
 
Hi Sue! Eight years?? Oh wow.... was his progression fast to where he’s on the vent? My hubby had a fast progression to where he is now.... I’ll be 60 in September and I feel like 80 already!
 
I would not say it was particularly fast. He had symptoms for about 2.5 years prior to being Dx and then vented 3 years after that. Not sure whether that’s fast, slow or med. :). Yes, the vent is very hard on the caregiver. Make sure you take care of yourself. I’m 56.

Hugs
 
Hello Sasha, and welcome.

What a roller coaster you've been on. My husband initially said no vent, but it only took one episode of air hunger to change that. He was trached in March, and we've been in and out of the hospital ever since. We may be looking at regular monthly 10 day antibiotic courses to keep the infections at bay. It's ironic--his skin is in remarkable shape, but we just can't stop the pneumonia.

I can appreciate hour terribly tired you are. What you've been through is not only physically, but mentally and emotionally exhausting. Thank heavens for your children!

I have some very small roll pillow forms that I made small pillow cases for. We put them behind my husband's neck, which tilts his head back and takes some pressure off the trach. We counter the angle and help him see the TV by tilting the bed forward (Trendelenburg is a huge help).

Becky
 
Spent the entire weekend similar to last weekend.... grading papers and cleaning poop.....I need a new job as I can see this current one is not going to support me for long. I’m already dipping into our savings... who knew an ambulance ride would cost almost $500, and is not covered by insurance.....now I know....
 
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