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HalsWifeFran

Active member
Joined
Apr 30, 2010
Messages
70
Reason
CALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
I have so much to say! It's been hard to find time to go online these past two weeks! Hal is in bed now, alarm outside his door, let's see what I can do!

Caregivers perspective here:

Today, I feel really bad that I encouraged Hal to get the tracheostomy NOW.

Hal and I both have always planned for him to have the trach when it was time. The problem is, how do you know when it IS the best time - not too early and not too late - If you wait too long, then it's more difficult to recover from the trach proceduere. It is also more difficult and stressful to learn how to suction, care for the trach, etc, when the person with ALS is in bad shape. However, if you don't wait too long, then you never know if you could have "gotten by" safely for a few more weeks, a few more months, maybe even a year, without having the trach.

Before getting the trache, Hal never complained about shortness of breath. His breathing was not an issue to him. I, however, always seem to his progressive changes before he does. I noticed that he was frequently winded after minimal movement. I worried about how frequently he choked on his saliva. So I encouraged him to see his pulmonologist last month, barely over one week after the previous check up. The appointment was March 28. That same day, earlier, we learned htat Hal's mother had died. Terrible day. The pulmonologist was not able to get any actual test numbers - no FVC, no blood gases - and he pushed us into having the trache done ASAP - he wanted to check Hal into emergency that same day! We put it off until after Hal's mother's funeral.

The procedure was done April 12, 11 days ago. Hospital experience was horrible. Not that nurses are mean - but Hal could not speak, nurses are too busy, and no one took time to try to figure out what Hal was trying to communicate. So I spent day and night in his room. Slept on a chair in ICU and later on a cot when he was moved out of ICU. A terrible week! I won't go into the many, many mistakes made even with me there. Here are just two: Second day post-op in ICU, after a change in staff, the night nurse almost gave him double meds while I was out of the room - the day nurse had forgotten to chart the evening administration! Hal tried to stop the nurse, I walked in and was able to do that just in the nick of time. Another mistake: First day post-op we were informed that Hal had tested positive for MRSA. Tape around the room. Everyone had to wear gowns, masks, gloves. Even I was supposed to do that. Felt like Hal was a pariah. I kept pressuring the hospital to re-test his sample. Our doctor finally helped make that happen. After four days of isolation treatment, turns out it was a mistake! Hal did not have MRSA.

So now here we are, 11 days post-op. Home, hurray! Hal is still much weaker than he was before surgery. He is much more uncomfortable. I cannot leave him alone unless I have someone who can take over with a sterile suctioning procedure. So far that has only been paid for LVNs. Speech is almost non existent, whereas before the trache, he could talk - it was just difficult to understand him. We use the ventilator only at night. It's unpleasant, but Hal is getting used to it. During the day, he breathes through the trach. Messy. Lots of secretions.

The good news: Hal is getting stronger every day. He is needing suctioning less and less frequently. Last night, only twice. During the day, internal suctioning maybe 8 times, although we do external/ non-sterile much more frequently.. And after Hal heals, he will be able to be suctioned more easily, and it won't have to be sterile, so I'm hoping to train some family or friends to help out.

Am I glad we did this now? NO! NO! NO! (Did I say "No?")

The problem is, I can't see into the future. Maybe Hal would have been fine without a trach for a relatively long time. And maybe not. I'm not a gambler. I want Hal to stay alive! Doing this early is a chore. It's unpleasant. It's difficult. Hal has lost some more of his independence. Hal suffered damage to his heart or lungs or brain. And he recovered quickly - out of the hospital and back home in one week. We will get used to his new limitations. We have to. And they would have happened at some point, anyway.

But I am very sad. I caused this. Poor Hal.
 
Don't beat yourself up about this Fran. You did what you thought was right at the time. It will get better. You and Hal are tough. You'll be fine.

AL.
 
Fran, thanks so much for posting and I'm so sorry that things have been so hard. I am glad that Hal is home and getting stronger.
 
Hi Fran

I'm very sorry to hear about your trials and tribulations. But thank you for sharing your experiences.

I'm in a very similar situation to Hal and have been wondering if I should get a trach sooner rather than later. So your post is very helpful.

You never know- time may prove that it was the best decision you ever made.

Take care

Richard
 
Oh Fran... don't be so very hard on yourself hon. We all make decisions that are very very hard... and because of their permanent nature we 2nd and 3rd and 4th guess ourselves! Which is why time and again our motto becomes "It is what it is" I sincerely hope you can get some rest, which might help your overall outlook a bit. Take care.
 
Fran, Hal is so lucky to have you, a caring and competent wife. Your decision was made out of love and with the guidance of a doctor you respected. I am sure Hal does not see YOU as the cause of his difficulties. You went with your gut - don't look back now. I agree with Richard 'time may prove that it was the best decision you ever made'.

Praying for continued healing and strength for Hal and peace and rest for you.

Blessings,
Jo
 
Fran, I remembered feeling the same way when we got the PEG very early. About 9 months after we got it Les finally realized that it was a good thing. As you know, our Doc's are also pushing for it early, and as Les doesn't have to wear BiPap all the time, and can still be understood a bit, your experience is so very helpful. One quick question: How is this affecting his eating? Les still eats the majority of his food by mouth, and if the trach would limit his food consumption, there is no way we would do it while he is still able to enjoy eating. HUGS Lori
 
Correction to my original post - sentence in last part should read: "But Hal suffered no damage to his heart, lungs or brain"

And that is a very good thing!
 
Quick answer to Sadiemae: Hal can still eat as much as before. When he wants to eat, either by mouth or g-tube, we inflate a small cuff that closes off the connection between his esophagus (for swallowing) and his trachea (for breathing).
 
Dear Fran,
You did what the pulmonologist recommended, stop blaming yourself.
As a former RN,I am ashamed of the care Hal received,I hope you complained about it.
I am praying that Hal continues to get stronger and that you get some help with his care.
Sending you a bundle of blessings for all you do. Pat
 
Swallowing is more difficult. I haven't actually eaten anything but a little piece of dark chocolate. I wasn't eating much before, just desserts. I'll try some pudding today.

As far as the timing, it's too early to judge. We are still learning (Fran) and healing (Hal). Ask us in a month.

And I certainly don't blame Fran for the timing. Ultimately I made the final decision.
 
I'm hoping things get better for the both of you, Hal & Fran!
 
Hal and Fran,
Thank you so much for sharing your experiences. This decision is coming up for us also. I'm so sorry your hospital stay was so unpleasant, but I'm encouraged that it was relatively short. They tell us here that a month is not uncommon.
I admire both your spirit, and hope and pray things will continue to get better.
Tom
 
Fran and Hal, I'm sorry the adjustment is a rough one. I'm another former RN chipping in her two cents--getting the trach is a very invasive procedure and each individual rebounds differently. Joel was one tough cookie with many procedures he had done, but he was actually rare with how smoothly things went for him. I think your specialist probably made a good judgment, and in another couple of weeks the difficulties will all be a bad memory and you will be glad you did it early. I think Joel would say the same. Joel's daughter-in-law is a RN and probably having her living on the property with them eased them through the difficult days that you are experiencing. Lots of good wishes and lots of love to both of you.
Laurel
 
Hal and Fran,
I can say something about you both, and it is this, your are both super loving, caring, and amazing. Your committment and love to one another, is the true meaning of marriage. I am in awe of the team work you both are showing.. This too shall pass. I am sending hugs virtually to you both.
 
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