The Duchenne Guide for Tracheostomies

spine

Originally posted on DearRicky.com

Following my spinal fusion surgery, the second major operation I had was the tracheostomy.  It was an emotional decision, but one that gave me another chance at life.  Every medical procedure is a risk, even the minor, which can be rather frightening.  Here is a list of items to consider, from my own experience, that might give you a better sense of direction if your child chooses to take this route for continued living.

  • When your child awakes, he will panic with the feeling of breathlessness. Tell him to relax and let the ventilator do all the work.  The less he tries, the calmer and more comfortable he will remain.
  • Once he becomes familiar with the new rhythm, if he is still having a difficult time, it might mean the ventilator requires adjustment. Ask the respiratory therapist to lower the sensitivity, or “Flow Trigger Sensitivity” in the Trilogy 200.  It will make calling for a breath much easier.  However, remember not to make things too easy as it could create hyperventilation.  Trial and error is encouraged.
  • If he is indeed using a Trilogy ventilator, they will probably start him off with Assist Control mode. For a more comfortable feeling, there is a setting called Pressure Control.  It’s a good option to try.
  • There are two particular types of trach tubes that are used; ones with an inner cannula that can be cleaned (basically, a secondary tube to replace) and ones without. Those with inner cannulas hurt a great deal because of the tugging and pulling.
  • If he complains about back and or chest pain, it could very well be the hard Shiley trach tube that everyone begins with. Extreme agony may occur as a result if it starts hitting nerves.  Changing to a softer, silicone version will most likely solve the problem.
  • Stoma pain can easily be solved by placing a foam padding with a slit underneath the trach tube.
  • Don’t worry if there is blood in his secretions for the first few days. It’s from his wound drippings.  His clothing will stain red while sitting up, so don’t put on his favourite shirt in the beginning stages.
  • When you’re not with him, your homework is to go shopping as you need to be prepared at home. Mainly, you should have a small cart on wheels (preferably the ball wheels for smoother turning) with two levels for the home ventilator and suction machine, along with emergency items.  An extension cord is essential, and a surge protection power bar as well.  Also, a stackable drawer system for medical supplies.
  • Always keep the Ambu bag nearby. You never know when equipment might fail.
  • The ventilation tubing will accumulate moisture over time and you don’t want it going into his lungs. Most nurses won’t care, but it’s much safer to unhook the ventilator first, shake the excess water down into the trap, before switching sides.  Remember to keep the water trap lower than your child, while emptying it on occasion.
  • Talking won’t happen, even when the wound heals, unless he learns how. The secret is speaking during inhalation.
  • Unless the secretions are impossible to remove, try not to let the suction catheter go beyond his trach tube while suctioning. If the walls of his trachea or carina are scraped too much, granulation tissue could develop, which may block his airway.  Catheters can be cut to the perfect length if measured through the swivel adaptor.  This doesn’t happen with inline suctioning, which is not recommended because the weight might eventually damage the stoma.
  • There will be many things to remember, so bring a notebook.
  • The most dangerous issue with ventilation is the possibility of mucus plugs. As a preventative measure, make certain that the humidifier is always watered and on medium.
  • Chest physiotherapy must happen twice daily; once in the morning and once at night. If not, your child will be overwhelmed with secretions.  Both sessions cannot be missed, even for the sake of time and convenience.

Tracheostomies are beneficial, but take a lot of getting used to.  Hopefully, the above tips and advice will ease some of the stress that comes after the operation.  Most importantly, don’t be afraid and take charge instead.  Your attitude may potentially save your son’s life.

Lastly, the video below is my way of preventing pneumonia, in which I have been able to completely avoid.  There is a handful of people who believe this method is dangerous and I don’t recommend it for the squeamish, but it is much better than dying in the hospital.  This solution only applies to patients whose main caregiver is willing to change trach tubes on his/her own.

Deep suctioning is, of course, necessary.  However, the first stage makes all the difference in the world when aspiration is involved.  It will remove particles outside the tube, which antibiotics can never help with.  A cut yaunker is needed, and be sure that everything is sterilized, while hands are washed.

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