Posted by: ElliptiGO Girl | May 24, 2011

There IS life after a Tracheostomy

Easter 2011. Supervised egg dying, but can't eat them!

Fran. Blogged on ALS forums.com  April 23, 2011: 

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 trach, 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 not good. Hal could not speak, nurses are always busy, and no one had the time to try to really 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 very difficult week! I won’t go into all of the 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. Much nicer. However,  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 now almost non existent. Before he had the trach done, he could talk – it was just difficult to understand him. Currently, 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. An opening in his neck. Messy. Lots of secretions. If they accumulate he cannot clear air though that opening.  Cannot let that happen. 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 need to draw the secretions out though external means frequently.. And after Hal heals, he will be able to be suctioned more easily, and it won’t have to be as 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.

ONE MONTH LATER:

May 21, 2011. Windy day. GREAT to be alive!

Fran  May 23, 2011
 


What  a change one month makes! Hal now is going from noon until 11pm without any suctioning  whatsoever – and has managed that for 9 days in a row.  He is speaking a bit – using a one-way valve that allows air to pass in through the opening in his neck, but blocks airflow out, sot the expired air moves past his vocal cords and out his mouth. What a gift speech is!
Hal has regained much of his initial post-surgical strength loss. He is snacking on ice cream through his mouth.  He is smiling. Laughing.  So am I.  Soon I will be comfortable leaving him with friends for short periods. Life is good once again.
I do admit, my life now would be considered rather far from “normal”. I am now truly a full-time caregiver for my husband. Here is my daily “Hal Care” schedule:
.

7:30am: 

  • Administer Rilutek.
  • Take Hal  off ventilator.
  • Prepare Hal’s breakfast and morning medications and vitamins

 9am  

  • Get Hal out of bed, help him use urinal, and help him into wheelchair
  • Check and clean opening around trach tube, change inner tube lining and dressing
  • Wash face/brush teeth
  • Shave face
  • Suction trach tube as needed
  • Wipe eyes as needed

 9:30-10am

  • Bring Hal (in his wheelchair), with alarm, and iPad, into family room
  • Breakfast (2 cans Nutren, meds and vitamins by g-tube)

 10 – 11am  

  • Wipe or suction trach tube as needed
  • Urinal as needed
  • Wipe eyes as needed

 11am -1pm:  

  • Toilet time
  • Vaporizer for 30 min.
  • Deflate cuff, deep suction, apply Speech valve (Hooray!!!!)
  • Urinal as needed
  • Wipe eyes as needed

1 – 5pm

  • Snack
  • Shower (every other day)
  • Change inner tube lining and trach dressing
  • Check/change g-tube dressing
  • Lunch #1(1 can Nutren + 2 oz vitamins by g-tube)
  • Lunch #2 (1 can Nutren + 2 oz vitamins by g-tube)
  • Urinal as needed
  • Wipe eyes as needed

5 – 10pm

  • Rilutek + 16oz water at 5:30pm
  • Central line: Administer IV nutrition/flush Change dressing and connector Thurs.
  • Dinner #1(1 can Nutren + vitamins and meds)
  • Dinner #2(1 can Nutren + 2 oz vitamins)
  • Move to recliner at 8:15pm
  • Wipe or Suction trach tube as needed
  • Urinal as needed
  • Wipe eyes as needed

10pm- midnight

  • Transfer from recliner to wheelchair
  • Urinal
  • Floss, brush teeth and wash face
  • Remove speech valve (boo-hoo!), inflate trach cuff, change dressing and inner tube lining
  • Transfer to bed
  • Deep Suction
  • Set up Ventilator
  • SLEEP! Lying next to My One. My Hal.
.
Yes, Life if far different from what I might have planned before the tracheostomy. Before ALS.  But I have Hal.  My life is with him.  It is life.  And it is very, very good.
.

Here is a direct quote from exactly one, very long, month ago:Am I glad we did this now? NO! NO! NO! (Did I say “No?”)” 
.

Please allow me to update that quote:
Am I glad we did this now? YES!”
.

The hard work is done.  We did it!  Now we are prepared for the future.  As ALS continues its relentless course.  Hal and me.  We did it.
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Responses

  1. Glad to hear things are so much better. Enjoy! Wish I lived as close as we once did so I could jump in and help out. Best Wishes! Carol

  2. Thank you for sharing this. We are right behind you in progression, and thinking about the trach, so this was very good to see. Wishing you and Hal a long and happy life together.

  3. Jean – thank you for sharing, too. And I wish you and your person with ALS a continuing good life together. Every precious moment.

  4. I am so eager to hear how things are going with you and Hal. Hope all is well.

  5. Oops- I didn’t mean to be anonymous above. I am Jean. =)

  6. Hi there. My name is Brandi and my husband was dx 2 years ago at the age of 40. We have 3 children in school. ages 15,10 and 7. When we first heard the dx we looked on line to see if any one had been healed of the disease and come to find out we found 3. A women and 2 men. I did searching and found one of the men that ministers to people all over the world. God uses him to bring revelation to any hindrance in their lives that could hinder ones prayer. He was dx at age 38 and his healing was a process after he had given his heart to The Lord. His healing begin to take place at the age of 42 and over a period of time completely symptom free! Praise God! He just celebrated his 69 th birthday still to this day symptom free. We talk to him on a regular basis. You might want to look him up on the Internet and read his testimony. If you google army general ron white healed of als it should bring up his testimony. His email address is rwhitewatchman@msn.com.

  7. I had a trach for 2 months, gone now, but will chock on smLsmall stuff. Really??

  8. You post interesting articles here. Your website deserves much more visitors.
    It can go viral if you give it initial boost, i know useful tool that can help
    you, simply search in google: svetsern traffic tips

    • Thanks! I do intend some day to start blogging more regularly. I haven’t been doing much for the past few years. I feel like I’m closer to being ready to get back into it now.

  9. I just had a tracheostomy July 29, 2016. It has definitely is a change in life. I am one month post op. I am getting cleaning my inner cannular 2-3 times a day. I also need to use a nebulizer every time I lay down.
    I am very happy that you and Hal feel that you made the decision.
    I have a very rare disease called amyloidosis of the larynx. Only one other person in WI has had this disease.


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