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ccjjcc

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Loved one DX
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08/2010
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US
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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.
 
Where do you live? Remind me to never visit there! That is absolutely horrifying, I am so sorry he had to go through that! It is inexcusable. They obviously are totally incompetent. There is no way they they should be practicing medicine.

I am happy you were there and fought for him, God bless you for all you have done. My experience was the exact opposite and it was easy. If I can answer any questions please let me know. I want to help!
 
Thank you joelc. Last night when my brother was so bummed at all the warnings, I had him read your replies in my other thread and it
encouraged him.

I called the hospital and they've got him on morphine and he's sleeping. I will need to be there when he comes out of it because the few
times he woke up, he was trying to communicate something. Also, I know they won't pay attention to making sure his fingers are uncurled,
and his feet up against something (because of the tendency of his feet to point downward) They also may not be careful of his right arm and shoulder which are excruciating if not moved right.

What about diet? They are going to do a swallow eval tomorrow. I would think choking would be a big risk. I'd just as soon he get his PEG
as soon as possible.

Another little caveat you will love: when the primary care consulted with the neuro from the clinic, she confirmed that he rarely supports
a vent - except in "exceptional" cases where the person is young and has young children or something like that, and has their whole life
ahead of them. (my brother is only 58) My brother and I had exchanged "sheesh" glances at that point.

But mainly, I am just concerned he comes thru this okay and isn't in too much pain, and can adjust, and can breathe and be okay. (!)
 
Correction: my brother is only 58
 
He is the same age I am. So, basically, the doctors decide who lives and dies! That is not right.

But I did have to convince a few doctors I knew what I was asking, after that it was unbelievable how smooth things went. Another thing you should know is that a bipap and a ventilator are very different. You want your brother on a vent and it will be easy to get used to.
 
My brother had a nasal feeding tube inserted today, and is supposed to get a PEG tomorrow morning.

However, he has been having panic attacks on the vent and they have given him something for that. Also, his blood pressure has been
dropping today and that has me concerned. My daughter is over there now (late evening) and called to say it had dropped to 89 over 39 and then 71 over 46. I guess the doctor was coming. I'll go after work.

Now, I'm afraid for him to have the PEG tomorrow and wonder about waiting an extra day until his BP is stabilized, if it can be.
 
I am horrified you were treated like this. I am looking forward to hearing how this all resolves itself. Big love to you guys.
 
Sorry to hear you are going through difficult times. We will all be thinking about you and hoping that he adjusts soon and begins to feel some comfort. He is lucky to have you there going to bat for him and making sure he is comfortable. People that are not a caregiver to someone in the most personal sense seem so dense sometimes.
 
Thank you for your well wishes. I went over there from work and spent the night. His BP had stabilized. They think maybe he had needed more fluids.

He, despite being on the vent, can go "pssst!" pretty loud to get my attention. He also can make this whipperwill kind of sound - at first I
thought it was the vent and ignored it. This morning he was alert, hungry, and wanting to watch football. They came in and did the PEG procedure which they said went well and he is resting/sleeping. I came home to get a nap.
 
Sounds like things are improving! That is encouraging, thank you for the update. Could he talk before the trache? It so then push for a cuffless trache tube, that is what I have and could talk for 2 years after getting my trache. Even though I can't talk anymore I still have that kind of tube.
 
I've been following your brother's story, and am glad things are looking up. You are both in my thoughts. D
 
I am so sorry about your brothers' experience. Thank God he has you as his advocate.

Blessings Pat
 
Thanks for the update and the positive news. Now I hope the nap helped you and things get back to normal (which seems to change daily) for both you and your brother.
 
Wow! I hope things get better for you. What horrible medical people. Unbelievable that they spoke and acted the way they did. We have had our share of vent/trache issues but now Mom is encouragement for those who are wondering if they should vent. It changed her quality of life for the better. Before the vent she was so tired. Good for him for insisting on it and good for you for standing by his side.He is lucky that he has someone to fight for him. You hang in there. You don't live in NY do you?
 
Thank you for the kind words. No, I don't live in NY. My brother has a "rattle" so I hope he doesn't get worse. They're doing a chest xray early
this morning. After the trach, he had a lot of blood, and when they suctioned him, there was a lot of blood that had gotten down in there, it
seems. It had cleared after about 24 hours. He's pretty out of it, or was last evening, because he's in some pain from getting the PEG. So,
we'll see. I'm hoping for the best.

LauraW, I'd like to read about your Mom, and your issues.
 
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