Anyone with experience with a tracheostomy?

Re: Anyone with experience with a tracheostomy?

• JoJoGee member

  September 2012

  Hi Unm, my daughter, Lily, has a trachestomy.  It would probably be easier to explain the pros and cons if I tell you our story...

  About a year and a half ago my daughter entered this world at 26w2d gestation (I had developed HELLP syndrome - and it was either deliver or we both die).  She was a fighter and did very well her first couple of weeks in the NICU (we didn't encounter many of the preemie problems most families have).  When she was two months old, it became clear that she could not handle being off the ventilator.  So, we were transferred to the top children's hospital in the area.  She received a scope at the children's hospital, and it revealed that while her lungs were healthy, her airway was narrow, floppy and scarred.  Several interventions were instituted, but to no avail.

  At 37 weeks gestation, the Ear Nose and Throat specialist told us he thought Lily needed a trach.  At the time, Neonatology disagreed with ENT's suggestion.  So, my husband and I called a meeting with Lily's doctors.  Here is what we learned...

  The ENT believed that Lily's airway was too damaged to support normal breathing.  They didn't want to cause further damage by trying to take her off the ventilator again and again.  Also, extended time on a ventilator can cause lung damage, so we were risking hurting Lily's lungs by keeping her on the vent.  Neonatology conceded there was a risk of damaging Lily's lungs by keeping her on the vent - but they felt the risk was minimal.  In addition, they felt like Lily's airway could still improve if she were given some time to grow (a bigger baby means a bigger airway).

  So, it was either delay the tracheostomy and possibly avoid it all together - but risk damaging Lily's airway and lungs further by keeping her on the vent.  Or, get a trach now and deny her one last shot at breathing normally - but, avoid the risk of damaging her lungs and airway further.  

  I wanted the trach, my husband didn't.  I agreed we'd wait and give her one last shot - and DH agreed that she would get the tracheostomy if she failed.  We waited 2 weeks until we tried to take her off the vent again.  It was the longest 2 weeks of my life.  I questioned our decision every day.  I was certain Lily's airway and lungs were getting worse every minute she remained on that ventilator.  At 39 weeks, Lily failed her last attempt off the ventilator.  And, while I thought I was prepared for Lily to fail, it hit me so much harder than I ever imagined.  It was one of the worst moments of my life - and I still cry thinking about it today.  Just before they put Lily back on the ventilator, I took a video of her crying.  It is the only recording I have of her voice.  I thought I might view it someday, but I still can't bring myself to watch it.

  When Lily first got her trach, we were told she'd have it for a year.  A month later, that year became a year and a half.  And, at our scope 6 months after that, that year and a half became 2 years.  Lily is just over a year and a half now, and we're hopeful she'll be ready to decannulate (get the trach out) in January/February (she'll have just turned two).  Her lungs still need to improve some (but her airway is looking good).

  To be honest, life at home has been much easier than I originally expected.  We came home with many pieces of equipment (some related to Lily's trach, some not).  But, even with those, we were able to take a trip to Disney World just 2 months after Lily came home.  I take her to church and she attends family functions.  We have memberships to the Zoo and I try to take her to Story Time at the Library.  We do have to avoid water (splash-pads, pools, etc.), and sand boxes, but mostly we find we are more limited by Lily's physical delays than her trach (Lily also has CP).

  The part I struggle with the most is the in-home nursing.  Because of Lily's trach and G-tube, we have 106 hours of nursing a week.  Most days, the benefits outway the negatives.  106 hours means we have a nurse for Lily every night of the week, as well as 50 hours of day time nursing (40 hours for work, and 10 hour for respit).  The help is great, but there are problems.  Last month, I had 4 nights without nursing; that's 4 nights I had to stay awake to care and watch over my daughter.  I do try and take naps, but that affords me about 4 hours of sleep for the night.  A nursing company isn't like a hospital, so if a nurse calls off, your pretty much screwed.  And, I'm not going to lie, I'm getting pretty tired of constantly managing people in my own home.  I currently have 6 nurses that I manage.

  A few final things I forgot to mention - the trach does provide a direct path to to lungs.  So, these kiddos are more prone to infection.  If your child is healthy otherwise, it isn't that big of a deal.  You'll just find your cleaning more snotty noses than the other moms.  But, if your child already has a depressed immune system due to prematurity or other factors, this is a big concern.  We went on lock down last October - April and we still ended up hospitalized 3 times (and I cannot tell you how many times we went to the ER).  In addition, even if we were to eliminate the illnesses all together, we would probably still end up in the ER from time to time.  Lily has pulled her trach out and we've found bright red blood around her stoma, as well as in her secretions - so it's not like the trach is completely without risk.  We've had more close calls then I'd like to remember.

  But, over all, I am glad we got the trach.  It got Lily out of that hospital bed and home in our arms.  It enables her to be as developmentally appropriate as she can be and I am thankful for that.  

  Sorry for the novel, feel free to PM me if you have any specific questions.  There is also a Tracheostomy website and discussion board if you want to learn more... https://www.tracheostomy.com

  Your siggies adorable by the way!  Llama stampeed - I love it! 

                         
  

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• unm00red member

  September 2012

  JoJo, thank you very much for your very detailed response.  I deeply appreciate all the information.

  I wish you and Lily all the best.
  

  
  Steph
  

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