Clinic Visit

[adkdreams]

Well we had our ALS Clinic visit today and we were going in expecting to get bad news after seeing two internists and a respiratory therapist last week I thought we were prepared. NOT really hearing recommendations from the experts really makes it so real. UUUGGGHHH

So we were going in with thoughts about the trach/vent, we it was put out there and really put out there. This is not a bad thing as we deceided at diagnosis we would to give Don and the kids as must time as possible together. And me too of course. However the details of things is so much more complicated how does everyone navigate through them?

I am asking if anyone has the insite on how to bring the PALS home after the trach/vent? They are telling me I can't unless I have 16 hours of skilled nursing on board and it has to be private pay. Fine with me I will go to the poor house to have him home however what do you do when there is no such services in your area? How can they dictate how PALS and CALS live the rest of their lives? They said if I don't have it figured out when the time comes they can send him to the first available bed in a vent faculity which can be anywhere in NY and there are only 3 of them all more then 4 hours away from our home. How is this possible, how can they do this? Anyone got any clues around this?

He is not scheduled or in immediate need for trach/vent but they are giving us a heads up.

If that was not enough he also is getting fitted for a wheelchair and was told he better start using a walker to prevent anymore falls before he gets really hurt. UUUGGGHHH

Thanks for listening and any advise you may have for me.

Jodi

 

[Miss]

Jodi, that is just scary! I hadn't heard that you have to have 16 hours of skilled nursing available. I feel certain that will be available here, but still! You are right. How can the medical community dictate how you and Don choose to live the rest of your life. Why can't you be taught how to care for him?

 

[joelc]

The medical community can't dictate like that. You are not in prison and they can't stop you from taking him home. Just get him up, out of the hospital and take him home. I know several PALS that did just that. I even had that conversation with the hospital, they told me I could not go home so I said - watch me! I got up and wheeled out of the hospital. They can't stop you!

Having said that, make sure you are prepared at home with vents, suction machines and cleaning supplies. It is not as hard as they try to tell you.

 

[adkdreams]

Missy I can be trained but according to the hospital I only count as 8 hours a day.

Joel thank you in my heart I know that and will do that is necessary just tired of the bull crap you have to go through after you have worked so hard to have a good life. As if the disease is not bad enough now you have todeal with people telling you how to run your life and what you can and cannot do.

Everyone here is such an inspiration especially the PALS who have done navigated the "system" so to speak. Thank you for your wisdom again and will keep everyone posted after the 10,000 + phone calls to get our "ducks in a row" for the what ifs of this disease.

Jodi

 

[Miss]

Wow! Imagine if your day was really only 8 hours!

 

[brooksea]

Sorry, Jodi, I have no words of wisdom for you! Until a healthcare "professional" walks in our shoes, they do not understand.