Intensive care unit

[naxos]

My father has been in the ICU for a week now. He was found in acute respiratory failure last Wednesday and since then he's received invasive mechanical ventilation. The doctors here don't have much experience with ALS (that's what they told), especially with this rare ALS form my father developed where only his breathing muscles has been affected. He was able to walk, drive and eat alone before this incident. Even now we communicate by writing and all he's asking me is to get him out from there where (ICU) where he can see lots of people dying every day.

His big request, maybe last one, is to come home. The doctors told me they have no solution except the invasive ventilation and that he has to stay in the hospital and because nobody is doing anything at the moment I guess they are waiting for my father to die. On other side I know there are people that lived with ALS and after an acute respiratory failure.

Is there any device that can help at home? What do I have to suggest to the doctors?

 

[ottawa girl]

Many PALS, with invasive vents, can live at home a very long time, with proper help.

If this is is wish, and the doctors agree he's well enough to go home, they will surely arrange for training. Your family will learn how to care for him and also nurses will assist in this regard. It is doable with proper planning.

Sending you good wishes.

 

[Santa joe]

My advise to you is go and stay with a vent patient for a couple of days if you can find one close to you. Just visiting a vent patient does't cut it. You need to see what kind of journey you will be on. It is doable, but a hard road ahead. Make sure you have plenty of help lined up and they are vent trained. Most agencies can not provide a CNA with vent care. You then have to go with a LPN or RN which is very expensive. You might me fortunate enough to find a friend that is willing to be trained. My family and friends don't want that responsibility. It's just me for vent care. My thoughts are with you.

 

[naxos]

Thanks a lot for your advices. There is only a small problem: the whole action happens in Romania and there is little experience with ALS and especially with the respiratory onset where the other muscles are still alright (my father drove the car 1 week before the collapse). There is no possibility to receive long term invasive ventilation at home. Our (and his) last hope is a BPAP at home (or any other suitable NIV).

 

[Barbie]

I am sorry. I am confused, did they already do an invasive vent at the hospital? if so what are the options? if they remove it, can he use a NIV at home? If his wish is to go home then you should honor that. I don't blame him for not wanting to stay at the hospital.

 

[naxos]

They did an invasive vent in the hospital. Nobody knows what to do next as they don't have experience with it. I suggested a NIV at home but they can not say if it's going to work as they don't have experience with such things. All they can and know is to vent him in the hospital at the moment.

 

[Barbie]

does your country not allow invasive vents at home with 24 hr care? I don't want to scare you because I am not an expert and might be wrong, but I think if they take out the vent then it is just a matter of time before he stops breathing and dies. There must be an ALS clinic or pulmonary expert in your country--could you have your doctor call and consult? I have never heard of someone going from vent to NIV and surviving for any length of time, unless it was a crisis when they put it in and the crisis is resolved. with ALS, it is just loss of function.

Again, I am not an expert and I may be completely wrong. but I hope you discuss that with your dad--that by going home he maybe just going home to die. that is not a bad thing--I would rather die at home than in a hospital.

So sorry for the hard time you are going thru

 

[lgelb]

I am not sure you are talking about a trach, but if he is, then disconnecting it from the ventilator could well be fatal. Or not. It depends on what purpose it is serving presently.
I am not sure it matters what experience they have with this particular disease, as there is a procedure for determining whether someone can be weaned from a ventilator after a crisis.
I would guess the Trilogy ventilator, used non-invasively, is most likely to be available in Romania and meet your dad's needs, if he is able to survive without invasive ventilation. On the Respironics site the contacts are listed as:
Oxigen Plus (Home Care Products)

Calea Rahovei nr. 266-268, corp D, 1st floor
Bucharest
Romania

Phone: +40 21 456 47 73
Fax: +40 21 404 14 01

Email: [email protected]

Website: Oxigen plus - un aer de libertate



Cheminst (Hospital Products)

1 Termopile Street, Sect. 2
Bucharest -
Romania

Phone: +40 21 212 4678
Fax: +40 21 210 7249

Email: [email protected]

 

[naxos]

Thanks for the information you shared. I contacted the company that is renting the vent machines. My father has undergone tracheotomy surgery this morning so the next step would be to find a suitable device. This needs to be tested at the ICU site as nobody knows a specific device that would fit in this case.

 

[lgelb]

So if he now has a trach, the Trilogy or some other vents can be hooked up to that. Clinical manuals are on line so you can see what the settings options look like. I am sure those w/ a trach will chime in, but I would be hopeful that a suitable arrangement can be made to rent the device and then trial different settings that might work. The main issues for home care would be cost of supplies, someone (multiple people) to help him 24/7 and be trained on trach care. Those that help him at home should also know how/when/why to adjust the settings.

 

[naxos]

Does anyone know where I can buy online an used Trilogy device? Renting it would cost 1150 dollars a month. That's something I can't afford. An used one would be around 5-6000$ I guess.

 

[lgelb]

You can buy one on dotmed.com

 

[milanumpa]

If 2 doctors agree that your dad has anon treatable condition they can remove life support if that's what your dad wants. They have to remove life support. Call administration at the hospital and threaten them with lawsuit. If that doesn't work send him to a big hospital who will comply with your wishes. Good luck....mila. Remember there is good chance he will die without it.

 

[naxos]

Could someone one point me to a invasive vent device that can replace the Trilogy 100? Mobility is not a mandatory aspect and the price should be below Trilogy.

I've been searching for this information for the last week but I couldn't find anything that would help.