Dysautonomic Days and Nights

I remember growing up learning about David, the boy in the bubble.  He was stuck in sterile areas, forced to watch the world go by from the safety of a bubble.  Many attempts were made so that he could live a normal life, but David still passed away at a very young age.

For parents with special needs children it seems like a lot of time is spent watching the world go by while our kids are having to be placed in situations to keep them safe.  Some days they have to be placed in a bubble.  Not necessarily an actual bubble, but a bubble nonetheless. These bubbles need to be put in place so our children can stay safe and well.

Cary Lynn has over 30 diagnosis.  That's a lot for a 25 pound peanut.  One of her labels is dysautonomia.

Dysautonomia is a medical term often utilized for a group of complex conditions that are caused by a dysfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A dysfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment.

Other symptoms can include poor sucking at birth, drooling or feeding problems, poor muscle tone, delayed walking and speech, unexplained very high fevers or very low temperatures, wide swings in blood pressure, episodic vomiting, frequent lung infections or pneumonias, poor weight gain and growth, decreased or no reaction to pain, excessive sweating, cold hands and feet, a smooth tongue due to absent taste buds, and early spinal curvature. Ninety percent of children have curvature of the spine.

Right now girls outnumber boy 5:1 and there is no cure.  Symptoms can be monitored and managed. Before 1950s children often died before they reached 5 years old.  Today patients have a 50% chance of making it into their 30s. There is NO CURE.  NADA, ZILCH, ZIP.

So how does this affect Cary Lynn?  Well due to premature birth and a stage three brain bleed her ANS is in layman terms, roached.  She could be sitting in a room watching TV and all of a sudden jack a high temperature.  There isn't a rhyme or reason, she just does.  Her hands and feet are cold, her GI and endocrine system play havoc on her, and she doesn't like to have a normal blood pressure.
The biggest thing is that she misses out on a lot life has to offer.  Today we had a family reunion. Most people pack the kids, toys, food, and hit the open road.  I on the other hand packed three bags of medical supplies, a service dog, and the emergency numbers of all her main doctors.  I had to get clearance from medical people and work through scenarios with them just in case she had some sort of problem.

Don't get me wrong.  I'm thankful for a caring team that fights to keep my child healthy and out of the hospital.  Every day that we make it though without medical mishaps is a good day.  But it's hard. While the family is outside Cary Lynn has to stay in the house because she can't regulate her temperature.  I have to do body checks every 20 minutes.  She was perfectly happy.  She had her service dog and mamas undivided attention.  But as I watched my son kayak and run around outside with family I mourned the fact that my little girl can't have something that so many people take for granted.

We also had to come early to avoid heat.  But even doing that we still had to leave.  Cary Lynn started overheating and started having an episode.  So I had to grab her and go.  It stunk.  I'd rather be with my family.  Shannon says they understand.  I wish I did.  It makes me angry sometimes that she misses out.

Today we were lucky.  We got her taken care of and she's now happily singing to her dog while poking her ears.  (The dog wasn't as happy and just relocated out of reach.) We don't have to go to an emergency room and she's stabilized.  For that I'm thankful.  I'm also hopeful that someday there may be a cure or some new medications that will work even better.  Because you need hope through all of this.  Sometimes its all you have so you hold on super tight.  Plus Cary Lynn is a fighter.  She stays strong through everything and because she strong I need to be strong too.  So we will fight this battle the same way we fight everything else.  Strong and together.