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Life with the Medically Fragile

So many exceptional children suffer from medical complications that make catching a “simple” cold anything but simple!  Yet, when parents ask family and other care providers to wash and sanitize their hands when they enter your home you would think we are asking them to chop off their hands instead!

I have a standing policy, when I have therapists come to my house, that if they have visited a house (before coming to my home) where someone is sick, DO NOT come to my house!  This includes someone with a simple cold! If the therapist even THINKS they MIGHT be sick I do not want them to come to my house! I do not allow the Occupational Therapists (OT) to bring in ANY item that has been used by someone else earlier in the day, and I offer to buy any game, or other items they tend to use with my children while they are in my house. Why am I such a nut?  Why do my children call me a germaphobe during Cold, Flu, and RSV season!? It is due to Joseph!

Joseph is Baby D out of a set of surviving quadruplets I had in 2007. The first two years of his life were terrifying and he almost died twice after coming home from the NICU at a mere 4 lbs. Joseph has issues with growth so he is a tiny guy at almost 11 (less than 4 feet tall) and he weights about 44 pounds (he stumps the nutritionists). He has a narrow trachea (stenosis), he has tracheomalacia (due to being intubated for to long as a preemie), and he has scar tissue from the removal of a subglottic cyst that had blocked 80% of his airway (also from being intubated). When Joseph catches a “simple” cold it can turn into a life threatening condition. When he gets a respiratory illness it can inflame the scar tissue in his throat. This, in turn, blocks his throat and then you add the narrow trachea and tracheomalacia into the mix it cuts off his airway! Several time I have had to run him to Urgent Care in the middle of the night due to his labored breathing.  He cannot have the typical steroids you give for asthma since bronchodilators(eg, albuterol) usually do not help and may worsen tracheomalacia.  I have to make sure the doctors take the time to listen to me, and to listen to Joseph’s chest, to realize he is not having lung issues; instead, he is having an issue with his trachea and he needs appropriate steroids to lessen the inflammation in his trachea.

So am I a germaphobe? Yep, and proud of it!  I will do what I need to do in order to protect my son! So when you meet a parent with a preemie, or a child with medical complications, and the parents tell you to wash your hands, understand, it has nothing to do with you! It is just a parent’s desire to protect their child(ren)!

So how do you know it is safe to visit?

It can really hard to know if it is safe to visit during cold, flu, and RSV season! You can be contagious with these illnesses and not even know you are sick yet.


When we had the rare visitor during RSV season when the babies were born we would have them put on a hospital gown over their clothes after they had washed (for 2 minutes) and sanitized their hands along with wearing a face mask. Did it seem extreme? Yep!  Did we have many visitors? Nope!  ROFL  However, I did not care. I saw this as fighting for the lives of my children and I made no apologizes for being hyper-vigilant!  As you see, from Healthline, people can be contagious with an illness before they even show any symptoms.  Even after symptoms develop you should wait 2 WEEKS before attempting a visit to make sure you are completely over your illness.

I hope this helps you to understand why parents of preemie and/or medically fragile kids seem a bit extreme.  It is not, they do not want to be friends, it is not, that they do not want to be social, they are literally worried about the life of their child!  So be kind and understanding of their crazy hygiene practices!  If you visit, please immediately wash and sanitize your hands before you touch anything in the home to make sure you help keep everyone healthy!

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