Tough decisions today

[catcaniac]

Yesterday we traveled for our second appointment at The Duke ALS clinic. In the past few weeks, my husband's ALS has gone into hyper speed. Speech is almost completely gone. He can hardly swallow liquids and is throwing up or choking out most of what he eats. We were worried he would not make it through the trip home yesterday after 6 hrs of riding and another 4 sitting in the wheelchair. The social worker called this morning then the doctor followed up to say we need to know....he is critical... To get the PEG he will most likely have to have a trache and be ventilated. Wow! He was just diagnosed in Dec at the age of 35. He is so scared but he, his mom, dad, and me all decided that we have to do it. He is just not ready to leave us yet. This is all so scary. He will probably be admitted within the next few days. Any information about the trache and vent would be appreciated as I feel like a nurse who went straight from the first class to practicing the next week.

 

[joni51]

Cathy I am so terribly sorry that he is progressing so fast! Bless yor heart's...I hope all goes well , and I am sure someone with experience will jump in. Why not read Joel' pages. I am sure he has good info.

 

[Christina39]

I am so sorry you, your husband and family are going through this. That is so terribly fast I am sorry. I wish I had advice but know the caring folks here will jump right in. My heart is heavy for you tonight. God Bless, Christina

 

[Miss]

Cathy, I am so sorry. I don't know what to say! I thought my husband's progression was fast, but wow! My thoughts and prayers are with you.

 

[kelly]

I am so terribly sad to hear that your hubby is progressing so quickly. Please know I am thinking about you. I do not know about the vent....
however, the feeding tube did not take allot of recovery for my husband. There is allot of info on the feeding tube on the forum. Gosh...wish I could just reach out and give you a hug. Hang tough!

 

[abbas child]

Here are some threads, Cathy. I did a search on Trache Vent. There are many threads and posts if you want to go further...perhaps doing an "advanced search".
https://www.alsforums.com/forum/gen...4-choosing-possibly-go-vent-other-issues.html
https://www.alsforums.com/forum/als...al-vent-what-day-day-life-like-home-vent.html
https://www.alsforums.com/forum/general-discussion-about-als-mnd/13817-trache-change.html
https://www.alsforums.com/forum/als...-trache-care-sterile-vs-clean-techniques.html

I am also very saddened with the rate this monster is taking in your husband's life, as well as your own.

 

[sadiemae]

https://www.alsforums.com/forum/blogs/joelc/175-peg-story.html

https://www.alsforums.com/forum/blogs/joelc/116-feeding-tube-low-fvc.html

https://www.alsforums.com/forum/blogs/joelc/111-my-tracheostomy-experience.html


Here are some of Joel's blogs. I am sure he will pipe in with more info for you. He is the one with all the answers! We love you Joel!

 

[913mommyof3]

I'm so sorry to hear of your situation. I wish you the best! I am new to this group. My husband was just diagnosed with ALS and he is 34. Our guys are too young for all of this. I look forward to seeing more posts from you and learning from everyone on here. My thoughts and prayers are with you and your family!

 

[smwelder]

im sorry that you husband is progression so fast

 

[KKay]

I am so sorry. I am praying for your whole family that wisdom and strength will be yours. Remember... the best you can do, is all you can do.

 

[pudge44]

Hi Cat I felt with each word you typed a deep sadness firstly at your situation & having to travel and deal with it all as well, how evil this monster of a disease is just plain &^%$#@ evil, My husband is progressing fast too, he has lost most of his speech & now by the end of the day his speech is very garbled, he no longer sleeps, he eats but weight is falling and falling "peg tube time" his muscle mass is shrinking away, he drools much more than say 2 weeks ago, however last night he said NO WHEELCHAIR, NO VENT for me, he said no no no.

I was under the impression that my husband had 3 - 5 yrs or more but things are happening in 3 - 5 days at a time, I am praying for you and your family Cat hugs from Kim.

 

[KC2U2]

Cat and Pudge,

My heart hurts for you and your husbands, I am so sorry that you are enduring this and that it is moving so quickly. There is no way any of us were prepared for this, ALSucks, but you have so many here praying for you. Thinking of you today

 

[pudge44]

TY KC I cannot wait to get to the clinic in march it will be his first one where everyone will be there, I have so many questions I would like to see him level off for a while in his symptoms as he seems to be rolling with them way faster than we thought, not sure why but it really is scary.

 

[David_W]

Catcaniac -
I'm so sorry this horrible disease is moving so rapidly with your husband. It must be terrifying for all of you. I just recently had a peg-tube inserted. My breathing is weak, but instead of a trache (which I don't want) the surgeon simply intubated me, which allowed me to be ventilated during surgery and until I'd recovered sufficiently from the anesthesia to breathe on my own. I know this isn't exactly the information you were asking for and may be irrelevant for your husband's circumstances and wishes, but it might be worth asking the surgeons about it, especially if you're feeling rushed into a decision.

My heart and prayers to you, your husband and family.

 

[catcaniac]

We will discuss with the surgeon our options but his ALS doctor said that the surgeon wouldn't waive the consult visit (which would have meant another 6 hr round trip to chat) without us agreeing ahead of time that they could vent if they felt it was the best option. My husband has not kept any food down other than yogurt or a little ice cream for over 3 days and has eaten very little for over 3 weeks. He is getting weaker everyday so we can't afford to keep playing the waiting game, unfortunately. We should get a hospital bed available tomorrow so will most likely be traveling by the afternoon. Pudge from the sound of your husband's progression, if I were you, I would go ahead and tell the clinic you feel you really need to up the visit date and explain his progression. I realize now that we were too patient in waiting for things to move on their own and now we are almost in an emergency situation with the PEG as he has to take meds for seizures and they are not wanting to stay down.