ccjjcc
Active member
- Joined
- Jul 18, 2010
- Messages
- 88
- Reason
- Loved one DX
- Diagnosis
- 08/2010
- Country
- US
- State
- XX
- City
- where it's green
Quick version:
He got the trach this morning but they neglected to hook him up to a vent
which he wanted but left him gasping for air after the procedure and terrified. Finally got the vent hooked up, now he is on sedation and sleeping; has some blood in his lungs from the procedure, that they are suctioning.
(previous details here: https://www.alsforums.com/forum/gen.../14107-help-advice-needed-peg-bipap-vent.html)
Detailed version:
Oh my gosh, what a horrible procedure in general and afterward, to not be put on the vent right away.
We spend 2 days at the hospital; it wasn't a good experience in the ER, he couldn't
get used to the bipap. They said there was nothing they could do and he could go back
to the Nursing Home and arrange for an outpatient trach procedure.
That was before I talked to the patient advocate (I had finally reached my endurance
limit and asked for an advocate, then wound up sobbing in a private room.) Suddenly
people became very helpful and they admitted my brother into ICU. It is a wonderful large room with room for a family member to sleep in. People have been most caring,
for the most part. They tried the bipap numerous times, and it just isn't going to work for
him. He was so close to needing a trach anyway, that he decided to go for it.
Yesterday was a bit much for my brother because a parade of people came thru his
room to assess him and make "sure" he wanted to get a trach. He would say he did,
and they would kind of lower their head and give him a look. Finally, after proclaiming
loudly for the umpteenth time that he wanted to live and was not ready to go die, he said if one more person warned about getting one, he was going to punch them. (he
actually used a different verb)
We talked about the vent. I clarified with someone (don't remember who,now) that they
would attach a vent after the procedure. So off he goes to surgery this morning. I go
up to his room when he was back in it, and he is writhing and gasping for air, while
they are saying "he is just fine - his stats are good, he is breathing, he is getting
oxygen" It was only after getting close to him and lip reading that I understood he felt
he could not breathe and like he was suffocating. Then I had to have a few go-rounds
with the people there who said they were going to try the bipap. I insisted they go with
the vent as he had requested. They tried saying that if he went on the big hospital type
vent he wouldn't be able to adjust to the smaller nursing home type vent. They said
they would try the bipap and just tell him it was a mini ventilator. I said NO, do not do
that, he will think it IS a ventilator and that it isn't going to work either. The nurse or
RT or somebody then tried to say that the bipap and the vent are the same thing, that
if he can't get used to the bipap, he won't be able to do the vent either. (of course,
later, they denied they said that, but that's how I heard it). So I jump on the phone
and call the pulmo associated with the ALS clinic 40 miles away and get his on-call pulmo. He was helpful. He said with the trach already in, there isn't much advantage to using a bipap. He agreed that the problem is not airway blockage, it's muscle weakness (hello!) and of course it isn't going to be easier to breathe with just the trach, except for it being closer to the lungs. Why get a trach if they aren't going to hook anything up to it? At this point, I am paging the pulmo at the hospital we're at, and trying to get him to talk to the other pulmo. Outside my brother's room, someone had been objecting to his going onto a vent, saying something about his quality of life, and he will become dependent on it, why not just do bipap. (By now I feel like stomping my feet) I finally talk to the pulmo, who agrees he could go on the vent, and then leaves with a couple of Christmas presents in hand. Then he CALLS later to give the order for my brother to go on the vent! They hadn't even done that before! Talk about frustrating.
My brother is sedated and sleeping, and there was some blood that got into his lungs
during the procedure. A couple of people from our support group came by and stayed
awhile. That was a blessing. I had to leave and come home, because I've been running
on no sleep, nerves, and caffeine for a few days.
I am concerned about him. I hope he can adjust, and that I can somehow help him. My
heart breaks to see him suffering. He wants to live. I just hope he isn't panicking now
because he isn't "in control". Going back over there a little later. This hasn't been any
picnic. I feel so badly for him. I just hope he feels better in a couple of days.
LESSONS LEARNED:
1. The medical profession doesn't really support it.
2. Even if they say they know what they are doing, don't believe it all. Check and
double check everything. Make sure of all parts of the procedure (like that they are
going to bring a vent in for heaven's sake)
3. Sooner is better than later.
4. We're pretty much on our own with all of this.
He got the trach this morning but they neglected to hook him up to a vent
which he wanted but left him gasping for air after the procedure and terrified. Finally got the vent hooked up, now he is on sedation and sleeping; has some blood in his lungs from the procedure, that they are suctioning.
(previous details here: https://www.alsforums.com/forum/gen.../14107-help-advice-needed-peg-bipap-vent.html)
Detailed version:
Oh my gosh, what a horrible procedure in general and afterward, to not be put on the vent right away.
We spend 2 days at the hospital; it wasn't a good experience in the ER, he couldn't
get used to the bipap. They said there was nothing they could do and he could go back
to the Nursing Home and arrange for an outpatient trach procedure.
That was before I talked to the patient advocate (I had finally reached my endurance
limit and asked for an advocate, then wound up sobbing in a private room.) Suddenly
people became very helpful and they admitted my brother into ICU. It is a wonderful large room with room for a family member to sleep in. People have been most caring,
for the most part. They tried the bipap numerous times, and it just isn't going to work for
him. He was so close to needing a trach anyway, that he decided to go for it.
Yesterday was a bit much for my brother because a parade of people came thru his
room to assess him and make "sure" he wanted to get a trach. He would say he did,
and they would kind of lower their head and give him a look. Finally, after proclaiming
loudly for the umpteenth time that he wanted to live and was not ready to go die, he said if one more person warned about getting one, he was going to punch them. (he
actually used a different verb)
We talked about the vent. I clarified with someone (don't remember who,now) that they
would attach a vent after the procedure. So off he goes to surgery this morning. I go
up to his room when he was back in it, and he is writhing and gasping for air, while
they are saying "he is just fine - his stats are good, he is breathing, he is getting
oxygen" It was only after getting close to him and lip reading that I understood he felt
he could not breathe and like he was suffocating. Then I had to have a few go-rounds
with the people there who said they were going to try the bipap. I insisted they go with
the vent as he had requested. They tried saying that if he went on the big hospital type
vent he wouldn't be able to adjust to the smaller nursing home type vent. They said
they would try the bipap and just tell him it was a mini ventilator. I said NO, do not do
that, he will think it IS a ventilator and that it isn't going to work either. The nurse or
RT or somebody then tried to say that the bipap and the vent are the same thing, that
if he can't get used to the bipap, he won't be able to do the vent either. (of course,
later, they denied they said that, but that's how I heard it). So I jump on the phone
and call the pulmo associated with the ALS clinic 40 miles away and get his on-call pulmo. He was helpful. He said with the trach already in, there isn't much advantage to using a bipap. He agreed that the problem is not airway blockage, it's muscle weakness (hello!) and of course it isn't going to be easier to breathe with just the trach, except for it being closer to the lungs. Why get a trach if they aren't going to hook anything up to it? At this point, I am paging the pulmo at the hospital we're at, and trying to get him to talk to the other pulmo. Outside my brother's room, someone had been objecting to his going onto a vent, saying something about his quality of life, and he will become dependent on it, why not just do bipap. (By now I feel like stomping my feet) I finally talk to the pulmo, who agrees he could go on the vent, and then leaves with a couple of Christmas presents in hand. Then he CALLS later to give the order for my brother to go on the vent! They hadn't even done that before! Talk about frustrating.
My brother is sedated and sleeping, and there was some blood that got into his lungs
during the procedure. A couple of people from our support group came by and stayed
awhile. That was a blessing. I had to leave and come home, because I've been running
on no sleep, nerves, and caffeine for a few days.
I am concerned about him. I hope he can adjust, and that I can somehow help him. My
heart breaks to see him suffering. He wants to live. I just hope he isn't panicking now
because he isn't "in control". Going back over there a little later. This hasn't been any
picnic. I feel so badly for him. I just hope he feels better in a couple of days.
LESSONS LEARNED:
1. The medical profession doesn't really support it.
2. Even if they say they know what they are doing, don't believe it all. Check and
double check everything. Make sure of all parts of the procedure (like that they are
going to bring a vent in for heaven's sake)
3. Sooner is better than later.
4. We're pretty much on our own with all of this.