Who do you call when you need a babysitter? Perhaps you know a trusted teenager who can stay with your precious child. Or another mom who wouldn’t mind looking after your son or daughter. Even better, your mom or another relative helps you carry the load.
No imagine with me, you have no babysitter you can call. No teenager, no other mom or relative. This is not temporary, but it is a permanent situation. This is the life many moms face as special needs mothers. Leaving your special needs child with an unqualified person to handle any emergency is simply not on option. Why? Because life and death depends on it.
This is not a dramatic statement but an issue of reality for many families. Below are three reasons I can not leave my son with a babysitter.
Samuel has a rare form of dwarfism called Thanatophoric Dwarfism. His challenges are primarily having restrictive lungs and extremely short stature. His life expectancy was not expected to be much past birth, but today he is a bubbly and happy thirteen-year-old little man. He is considered by many to be a miracle. For more information on TD, https://ghr.nlm.nih.gov/condition/thanatophoric-dysplasia#. To read learn more about Samuel’s story, click here to read, Miracle In My Living Room: The Story of a Little Mann.
I remember the first time I had to perform a trach change on my son, Samuel. My stomach churned, and I wanted to pass out. Prior to being asked to do this on my own, I couldn’t even watch the Pediatric Intensive Care Unit nurse do it. Seeing a tube removed and then placed into my son’s throat caused this momma much distress. Then the nurse asked me to do it on my own.
What if I do it wrong? What if I hurt him? What if he can’t breathe while I’m doing the change? Even seconds without air could cause Samuel’s oxygen saturation to drastically drop setting off all sorts of alarms. All these things went through my mind before doing my first tracheostomy change on my son.
With a nurse by my side, I leaned against the hospital crib, said a prayer and slowly pulled out Samuel’s trach. With quivering hands, and as gently as I could, I slipped in the replacement trach tube. I secured the trach with straps around Samuel’s neck to hold it in place. As quickly as possible, I reconnected the ventilator tubing onto the trach providing him with much needed air. My son’s eyes looked up at me and smiled. I breathed a huge sigh of relief.
Placing a foreign object in my son’s neck through an opening the size of a pencil causes my heart to flutter every time. Doing a trach change is not for the faint of heart.
And this is not something I would trust a babysitter to do. No, a trained professional with years of experience who knows how to manage any circumstance and is qualified to handle emergencies is more suited to this task.
This is just one reason a babysitter is not able to look after Samuel.
Another aspect of trach life is suctioning. The tube inside Samuel’s throat can get plugged up with secretions. When you and I cough, we can clear our throat, in most cases, easily. Put a tube in the airway and it’s not so easy to do, especially if the trach is blocked.
To help our little guy clear the blockage we use a suction machine which removes the secretions blocking his artificial airway. A nurse first showed me how to slip a tiny tube into Samuel’s trach tube just far enough to clear the airway without going to far in and hurting him. “But don’t do it too many times,” she said, “otherwise you will have to keep doing it.” My head spun with all this information. Do this. Don’t do that, they’d say. I was so glad to have nurses nearby to help.
Would a teenager feel comfortable using this equipment? Or another mom or even a relative? Such is the dilemma faced by special needs families. We can not simply leave our child with someone who is not qualified.
But what happens if Samuel is still coughing after a trach change and suctioning? We look inside our toolbox, so to speak, and find what will help Samuel breathe better. After all, that’s what a mom does…anything she can to help her child. The nurses taught me well.
The tool we use to unclog the trach and thin out the secretions is called a nebulizer. Thankfully, it isn’t un-comfortable for Samuel. It provides a mist of saline which is part water and part salt directly into the trach. This helps loosen up any thick mucus making it easier for us to suction it out.
We also use this machine if we hear Samuel wheezing by adding Albuterol instead of saline. If you have ever had asthma, you know the relief Albuterol provides. As a child, I had asthma so bad, I couldn’t even run. So, I remember how much this drug helped me to breathe. Now my son reaps these benefits as well.
Knowing when to use saline or albuterol has helped my son countless of times through his thirteen-year-old life. And I know it will help him in the future as well. But I can not trust someone without the knowledge to know when or how to use these treatments and the specialized equipment needed to help my son in a matter of seconds.
The next time you hire a babysitter, be thankful. Special needs children who have a trach or a stomach tube require specialized care and equipment. A babysitter is simply not an option. We are so thankful for our nurses caring for our son, being prepared for any circumstance and emergency. There are too many stories to tell that would not fit in this blog on how they have helped our son countless times.
So thank you to all the wonderful nurses who have given our son the specialized care he needed; in some cases even saving his life. From the NICU and PICU nurses to the wonderful home health care nurses Samuel currently has today, THANK YOU.
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