So Many questions I Need Help

[Cad4471]

These last couple of months has really changed my life and mind. Pals(hubby) was diagnosed 2 1/2 years ago being told that he had slow progression mainly lost most of the use of left hand. A few months ago I retired to come home to be with him and help him since I was seeing a difference in him. Three months ago we had our clinical (everyone prior had been little to no changes) However he lost weight every time we went with not really much discussion about it. He started at 128lbs never a large person he is now down to 108lbs. As he has been losing weight they told him to eat more calories. I was not pleased with this so I called his nero dr that had diagnosed him with Als, He was very upset that not any thing had been talked about a feeding tube. He sent us to a gasto dr and he said he would be very concerned about even thinking about it now with him and his frail condition. He was put on a BiPap Trilogy his last visit. His exhale had went from 85 to 30. With no explanation we know nothing about this machine. My husband is a person that he will take what they say and never question it. .

Ok here is where I need HELP. We have an appointment next week at clinical and I need to know what questions I need to ask There really has been nothing explained to us and when I ask him what are his wishes he says I do not know my options. I am not stupid but it was easy to hide in closet now the door is open and I am an emotional wreck and do not know where to start and what to ask. If any one can Please Please Help I would truly appreciate help in this.

 

[dalvin]

If his respiratory is not too low, the feeding tube is a good choice. Meds can be crushed, mixed with water and put through the tube. Insurance will pay for the formula after deductibles and copay are met. He should be able to put some weight back on.
Bipap will make it easier to breath at night, a lot of us end up using during the day too. Just make sure the rt adjusts it correctly. Also sleeping in a reclined position instead of flat improves breathing.
Finally, if he is a veteran and hasn't already done so, get him to see the pva ( paralyzed veterans) ASAP. He'll need his dd214 and a written diagnosis but the va considers ALS to be 100 percent service connected and will cover anything and everything he needs

 

[Cad4471]

Thank you for your help

 

[gooseberry]

Basically, when you go to clinic if there is anything you dont understand, i would ask them to explain it so you do understand. Dont be afraid to ask questions ...they are doctors but they are just people like you. They will take the time to answer your questions or send someone, a nurse usually, to spend more time with you.. Remember, your pals is in charge of their care. They dont have to accept any answer, test, or procedure. It is their right to ask for clarification so they can make an informed decision.

I would start with asking for a peg tube. Dalvin explained why they are a good idea. I would ask about taking Riluzole. I would ask about a handout for range of motion exercises to keep movement if it is needed. I would ask the dietician for handouts and materials, not just talking because you will forget, for a diet plan to improve your pals caloric intake. I would ask for smoothie recipes or stew type recipes/info. I would ask i fthere is any particular reasons clinic or neuro would need to be called....running a fever, pressure sore , etc. I would ask for a contact list with phone numbers and email addresses....

 

[Diane H]

Insist on a referral to a local radiologist who inserts feeding tubes using the RPG (Radiographical Percutaneous Gastrostomy) procedure. A gastro doc will uses the PEG (Percutaneous Endoscopic Gastrostomy) procedure. The RPG is highly recommended for people with poor respiratory status as it requires less sedation. His numbers are not too low for safe feeding tube insertion. Does he have a Pulmonary doctor? At this point a Pulmonologist can be of more help than a neurologist! Insist on a full explanation of the Trilogy and help in trying different masks and settings until he is comfortable on it. He will wear the Trilogy during the feeding tube insertion. His Pulmonologist and the Radiologist should discuss the tube placement before proceeding.

 

[Barbie]

Take a deep breath, because you are doing your best.

Ask the pulnmo to explain what the trilogy does and also why they put him on it. it is very commonly used and very helpful to most pals. a feeding tube can be very helpful to weight gain. ask the pulmo and the neuro about getting one, what are the draw backs and benefits. most pals that get one are very glad they did. How is his swallowing? does he choke a lot? do you puree his food? how is his walking? does he use a walker or scooter or cane?

sending hugs