C6/7 -Respiratory troubles - Thoughts appreciated

JacksonsGirl · 08-26-2012, 11:20 PM

My husband is C6/7 , still in rehab hospital (hopefully coming home friday? ! ) .. He is having troubles breathing. Last night he was trying to cough up some phlem, and ended up having an all out panic attack because he couldn't breathe. The theory is that it got stuck and left him unable to breath well for too long, and he ended up not being able to "catch up" or get a good breath. He has a little fluid in the bottom of one lung, some chest congestion (though no pneumonia), and atelectesis (partially compressed or collapsed lungs due apparently to the lack of deep breathing). They said that this is normal and they aren't concerned. We're trying to figure out why he feels like he can't breathe (this is a constant feeling for him right now).

DID ANYONE ELSE GO THROUGH THIS TROUBLE? WE ARE ABOUT 60 DAYS POST .. Does it sound logical that between diaphram breathing and whatever lung troubles he does have that his breathing would be considerably impaired, or is something else going on? He said he feels like his throat is closed too much - and he did just have a trach taken out 4 or 5 days ago. I'm thinking stenosis is a possibility , and they were going to take him to Ear nose throat, but said that medicaid wouldnt cover it. So, I'm investigating as usual... He did not tolerate the capping of the trach and said that he couldn't breathe good, but they took it out anyway. Any thoughts appreciated

SCI-Nurse · 08-27-2012, 01:38 AM

I would definitely insist on this being resolved BEFORE he is discharged from the hospital, even if it means going back to the acute hospital before discharge home. This is not normal, and it sounds like he is not getting sufficient respiratory therapy treatments and has not had sufficient diaphragm strengthening exercises during his rehab.

Is he getting IPPB, chest PT, and Cough Assist treatments to get rid of this atalectasis and retained secretions? Are they doing sufficient manual "quad" coughing? Did they cap off his trach for several days before removing it? Has he seen a pulmonary specialist who is expert in SCI pulmonary problems?

(KLD)

JacksonsGirl · 08-27-2012, 08:26 PM

They tapered off of the respiratory therapy quite awhile back. They used to do the "shakey vest" , but for the past few weeks they just do breathing treatments and thats about it. Yesterday was the first day they taught quad cough to him. They capped the trach but he couldn't tolerate it for more than a few hours or less. I insisted that he go to ENT, and they said they had an appointment made. The next day I went in and the trach had been pulled. There are respiratory therapists there who do see him on a regular basis , but they don't do much. They just keep telling him that its all in his head and that he's fine. He swears there is something up and he can't breathe very well. His oxygen has been good though, so I don't know.? If his oxygen is good then are we ok or does that not nesscesarily mean anything?

SCI-Nurse · 08-28-2012, 08:30 AM

I hope you get to see the ENT if he feels closed in feeling in his neck. Sounds like a lot of things are up in the air, you need more information and understand the situation better before going home.

pbr

triumph · 08-28-2012, 08:56 AM

My comments aren't much help but I can identify with this situation......in '09 I crashed with pneumonia and couldn't cough up secretions and had to be hospitalized for 5 months with many complications. I'm polio paralyzed, chest down and they put in trach and had respirator and daily suctioning. Later it was found the trach hardware was too large and they switched me to smaller one which greatly improved the weaning process. Capping was another struggle. After that, C-pap was started before discharge, I felt I couldn't breathe on it and they switched me to Bi-pap which worked fine. I use it to this day for overnight and naps.
Recently got a cough assist machine and will use it as needed.
I plan to always have a pulmonologist follow me, never had before this.

Just wanted to say keep working on these issues, things WILL improve.
Best to you.

JacksonsGirl · 09-02-2012, 02:06 PM

Good call Nurses, we ended up in the ER in respiratory failure. He has stenosis . The doctors there said that the trach should not have been removed if he couldn't breathe well when it was capped. We now have a trach again, and will have it for awhile until things settle down and the stenosis can be treated.

truly · 09-03-2012, 01:59 PM

You guys have really had your share recently. I hope things do settle down quickly, in all respects. I'm sure both of you are anxious for him to come home as it will answer all those questions in your minds about how it's going to be. Sending you my best wishes.

KyleP2112 · 09-05-2012, 08:55 AM

Though I know from first hand experience how your husband feels miserable since his injury just occured...his breathing should improve since his injury was "low" in the cevical levels. He's lucky to have you in his life...
My injury back in 95 was quite a bit higher at c4/5...as a result I had significant breathing trouble during the first weeks of my injury, including vent dependence for about 2 months, a collapsed lung, pneumonia, trache use for about 3 months and bad congestion. Today my breathing is really pretty good...except if I get a bad flu, which is rare.
When things seem bad and I wish I could "do more", I look back and am thankful I'm not still on that dreaded vent.

hlh · 09-05-2012, 09:18 AM

btw - He definitely could have seen an ENT. It looks like the rehab hospital was giving you "an excuse" why they didn't want to pay for you to see a consultant/specialist. Speak to the case manager if you need to clarify your coverage, and your rights.

Just so you know, if there isn't a doctor of suitable experience/expertise in the rehab hospital to see you and effectively manage your medical problems, Medicare or Medicaid will pay for you to go to see the specialist you need. Even if it is outside the rehab hospital.

Now you clearly know that the rehab hospital is not experienced enough at managing his respiratory issues. Make sure there is a doctor that will giving them instructions in the future for his breathing/trache care. Establish who that will be before you leave the acute care hospital.

When there wasn't a suitable specialist while my father was in rehab, we would have the rehab arrange a Medicar/transport and bring him to the clinic/hospital to see the specialist. This is how he had a formal sleep study to diagnose his sleep apnea, see an ENT to assist with the apnea and trache issues, and see his surgeons to follow-up his many many surgeries/healing fractures. The doctors would write an instruction sheet that was brought back to the rehab hospital, telling the doctors what changes in meds/treatment were needed.

08-26-2012, 11:20 PM	#1
JacksonsGirl Senior Member Join Date: Jul 2012 Location: Pennsylvania, U.S. Posts: 138	C6/7 -Respiratory troubles - Thoughts appreciated My husband is C6/7 , still in rehab hospital (hopefully coming home friday? ! ) .. He is having troubles breathing. Last night he was trying to cough up some phlem, and ended up having an all out panic attack because he couldn't breathe. The theory is that it got stuck and left him unable to breath well for too long, and he ended up not being able to "catch up" or get a good breath. He has a little fluid in the bottom of one lung, some chest congestion (though no pneumonia), and atelectesis (partially compressed or collapsed lungs due apparently to the lack of deep breathing). They said that this is normal and they aren't concerned. We're trying to figure out why he feels like he can't breathe (this is a constant feeling for him right now). DID ANYONE ELSE GO THROUGH THIS TROUBLE? WE ARE ABOUT 60 DAYS POST .. Does it sound logical that between diaphram breathing and whatever lung troubles he does have that his breathing would be considerably impaired, or is something else going on? He said he feels like his throat is closed too much - and he did just have a trach taken out 4 or 5 days ago. I'm thinking stenosis is a possibility , and they were going to take him to Ear nose throat, but said that medicaid wouldnt cover it. So, I'm investigating as usual... He did not tolerate the capping of the trach and said that he couldn't breathe good, but they took it out anyway. Any thoughts appreciated

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08-27-2012, 01:38 AM	#2
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,341	I would definitely insist on this being resolved BEFORE he is discharged from the hospital, even if it means going back to the acute hospital before discharge home. This is not normal, and it sounds like he is not getting sufficient respiratory therapy treatments and has not had sufficient diaphragm strengthening exercises during his rehab. Is he getting IPPB, chest PT, and Cough Assist treatments to get rid of this atalectasis and retained secretions? Are they doing sufficient manual "quad" coughing? Did they cap off his trach for several days before removing it? Has he seen a pulmonary specialist who is expert in SCI pulmonary problems? (KLD)

08-27-2012, 08:26 PM	#3
JacksonsGirl Senior Member Join Date: Jul 2012 Location: Pennsylvania, U.S. Posts: 138	They tapered off of the respiratory therapy quite awhile back. They used to do the "shakey vest" , but for the past few weeks they just do breathing treatments and thats about it. Yesterday was the first day they taught quad cough to him. They capped the trach but he couldn't tolerate it for more than a few hours or less. I insisted that he go to ENT, and they said they had an appointment made. The next day I went in and the trach had been pulled. There are respiratory therapists there who do see him on a regular basis , but they don't do much. They just keep telling him that its all in his head and that he's fine. He swears there is something up and he can't breathe very well. His oxygen has been good though, so I don't know.? If his oxygen is good then are we ok or does that not nesscesarily mean anything?

08-28-2012, 08:30 AM	#4
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,341	I hope you get to see the ENT if he feels closed in feeling in his neck. Sounds like a lot of things are up in the air, you need more information and understand the situation better before going home. pbr

08-28-2012, 08:56 AM	#5
triumph Senior Member Join Date: Feb 2008 Location: Michigan Posts: 214	My comments aren't much help but I can identify with this situation......in '09 I crashed with pneumonia and couldn't cough up secretions and had to be hospitalized for 5 months with many complications. I'm polio paralyzed, chest down and they put in trach and had respirator and daily suctioning. Later it was found the trach hardware was too large and they switched me to smaller one which greatly improved the weaning process. Capping was another struggle. After that, C-pap was started before discharge, I felt I couldn't breathe on it and they switched me to Bi-pap which worked fine. I use it to this day for overnight and naps. Recently got a cough assist machine and will use it as needed. I plan to always have a pulmonologist follow me, never had before this. Just wanted to say keep working on these issues, things WILL improve. Best to you.

09-02-2012, 02:06 PM	#6
JacksonsGirl Senior Member Join Date: Jul 2012 Location: Pennsylvania, U.S. Posts: 138	Good call Nurses, we ended up in the ER in respiratory failure. He has stenosis . The doctors there said that the trach should not have been removed if he couldn't breathe well when it was capped. We now have a trach again, and will have it for awhile until things settle down and the stenosis can be treated.

09-03-2012, 01:59 PM	#7
truly Senior Member Join Date: Apr 2011 Location: Wisconsin Posts: 503	You guys have really had your share recently. I hope things do settle down quickly, in all respects. I'm sure both of you are anxious for him to come home as it will answer all those questions in your minds about how it's going to be. Sending you my best wishes.

09-05-2012, 08:55 AM	#8
KyleP2112 Senior Member Join Date: Jun 2008 Location: Waterford,NY Posts: 413	Though I know from first hand experience how your husband feels miserable since his injury just occured...his breathing should improve since his injury was "low" in the cevical levels. He's lucky to have you in his life... My injury back in 95 was quite a bit higher at c4/5...as a result I had significant breathing trouble during the first weeks of my injury, including vent dependence for about 2 months, a collapsed lung, pneumonia, trache use for about 3 months and bad congestion. Today my breathing is really pretty good...except if I get a bad flu, which is rare. When things seem bad and I wish I could "do more", I look back and am thankful I'm not still on that dreaded vent.

09-05-2012, 09:18 AM	#9
hlh Senior Member Join Date: Mar 2008 Location: US Posts: 1,041	btw - He definitely could have seen an ENT. It looks like the rehab hospital was giving you "an excuse" why they didn't want to pay for you to see a consultant/specialist. Speak to the case manager if you need to clarify your coverage, and your rights. Just so you know, if there isn't a doctor of suitable experience/expertise in the rehab hospital to see you and effectively manage your medical problems, Medicare or Medicaid will pay for you to go to see the specialist you need. Even if it is outside the rehab hospital. Now you clearly know that the rehab hospital is not experienced enough at managing his respiratory issues. Make sure there is a doctor that will giving them instructions in the future for his breathing/trache care. Establish who that will be before you leave the acute care hospital. When there wasn't a suitable specialist while my father was in rehab, we would have the rehab arrange a Medicar/transport and bring him to the clinic/hospital to see the specialist. This is how he had a formal sleep study to diagnose his sleep apnea, see an ENT to assist with the apnea and trache issues, and see his surgeons to follow-up his many many surgeries/healing fractures. The doctors would write an instruction sheet that was brought back to the rehab hospital, telling the doctors what changes in meds/treatment were needed.