Hydrate, Hydrate, Hydrate…

Since his very first hours, Riley has taught John and I to be meticulously aware of his comfort and health far beyond the needs of any typical child.  Each special needs child has a condition and experience unique to themselves; however, our shared experiences may still benefit one another as caregivers and attentive parents.  This is especially relevant when addressing medical issues.  There are also times I must remind myself to remain vigilant over every aspect of my son’s health no matter how long the list becomes.

In our NICU days, John and I participated fully in aiding our child to… oh, what shall I call it? “Health” is certainly not the correct word.  It seems a little odd to refer to the status of my child as “sustainable.”  I will employ “health” for my own peace of mind… After birth, gavage feeding was introduced via Riley’s tiny nasal passages.  The day Riley finally reached my arms, granted the opportunity to attempt a bottle of painfully expressed breast milk, was joyous.  Nursing did not come naturally to Riley given his injuries and prematurity: but it was time to teach him via a two-ounce bottle and soft rubber nipple.  Eventually, we even graduated to the practice of breast feeding.  It never really did move beyond an attempt.  One day, Riley finally managed to drink the entire two-ounce bottle by mouth.  It was an amazing feat!

We continued to employ those tiny bottles along with the specially supplied nipples over the next several months.  The nipples, available only in the NICU, were manufactured by Enfamil and Similac.  I remember Riley’s first momentous decision he made and communicated quite effectively: he determined that Similac nipples only were worthy of nursing.  We supported this decision.  Our son and made a determination all on his own.  We rejoiced.

 

I digress.  Two-ounce bottles of any liquid over constant 45 minute intervals is not life-sustaining.  My intention is to address the importance of hydration, signs of dehydration and remedying the situation in a medically fragile child.  Clearly, my medical background is simply in participating in Riley’s care.  Most parent/caregivers must learn for themselves and constant medical supervision is not a reality for any of us.  So we learn and eventually become the expert in care for our children.  Please remember, I am simply a parent trying my best to keep my child healthy and help others along the way.

 

Dehydration contributes to multiple complications and concerns:   

  • Mucus : Thick mucus and difficulty dislodging it with a cough is characteristic of chronic dehydration.  Mucus secretions thicken as a defensive measure against irritants entering the body.  A child with cerebral palsy will have weak muscles and coordination problems throughout the body causing challenges to expel the secretions, contributing to breathing difficulties and discomfort.
  • Drool:  Difficulty swallowing, as is typically the case in a CP  child, will leave the fluids in the mouth to be disposed of as drool. The dehydration may be aggravated by continual profuse drooling.  A great deal of fluid may be lost each day through drooled saliva.  Prescriptions may be offered to control constant drool, reducing the saliva to a more manageable amount.  Robinul reduces the bodily fluids thereby contributing to overall dehydration.
  • Allergies: Histamines (http://www.merriam-webster.com/dictionary/histamine) aid in regulating our water availability throughout the body.  Histamines increase during dehydration in an attempt to keep our critical organs functioning by depriving less vital bodily systems through rationing.  Allergy medications such as Clariton and Allegra also contribute to dehydration.
  • Reflux:  Saliva and mucus increase along with reflux.  Regular throat clearing signals reflux in adults.  As acid travels up the esophagus, the body increases saliva to wash it back down again to protect the delicate tissues.

 

  • Stomach: A stomach deprived of water will not produce enough mucus to line the stomach walls.  This mucus breaks up the food during early digestion and if it is not functioning well reflux results.  Medications designed to reduce stomach acid, including Prevacid, Prilosec, Zantac, etc., will leave the body more vulnerable to illness.  This is because acids in the stomach are our first defense against bacteria which enters through the mouth.  Without the acid, bacteria is not killed off and passes into the blood stream and intestines.
  • Feeding tubes:  I cannot speak to this experience personally as Riley does not have a G-tube.  Children receiving their food sources through a feeding tube may be instructed to not add water to the diet because all the fluid needed is received through highly caloric formula.  Are tube-fed children in fact receiving enough water for overall health? Some caregivers do make a practice of flushing some water after a meal through the tube, but it is unlikely enough.  Received after a meal, the water does not leave the stomach soon enough, leaving a fuller feeling stomach which also contributes to reflux.   Try giving water 20 minutes prior to the meal; allowing it to leave the stomach before the food is received may help the child be more comfortable.
  • Our experiences with medical specialists is that the tendency is to focus on their specialty, seeking a single cause to any given problem which is in their ability to resolve.  We asked them to do it and they do improve the health of our children.  Our extremely complicated children have innumerable interactions keeping us all guessing.   Our children are a combination of many problems: allergies, reflux, drooling, side-effects to medications, reduced water intake, lack of communication in non-verbal individuals, reflux… As parents, it is our job to see our children’s bodies as a whole.  Our first job should be to resolve the ongoing dehydration challenging the majority of our special needs children.

Keeping our children hydrated is a basic and not something we should need to be told.  Being told of course is one thing, accomplishing it is quite another.

Resolving Dehydration:

  • BUN-creatinin ratio to test kidney function:  Dehydration affects the kidneys efficiency in removing bodily waste.  http://answers.webmd.com/answers/1198396/what-is-bun-creatinine-ratio
  • Water: Slowly increase the water given to your child allowing the body time to adjust to the changing fluid level.  Remember that plain water is the most difficult thing any of us swallow.  Medically fragile children receiving water will be challenged and may have to build their tolerance level even just to work so hard at taking it in.  My own son certainly objects and I have found he drinks more readily for myself than anyone including Dad.  I suspect this has nothing to do with skill but because he knows that Mom is simply going to push the issue until the bottle is empty.  See, we all keep learning and improving.
  • Don’t be frustrated, this is going to be an on-going struggle for all of us but the health benefits will help in improving quality of life for our children and ourselves.

 

Please add any helpful suggestions you may have to the comments below?  We all welcome learning from each other’s experiences.

 

Helpful resources:

Natural News

I found Suzanne Evans Morris, Ph.D. through her invaluable support of Special Needs parents via Facebook disability groups.  Dr. Morris’ New Vision site is worthy of exploring.

Dr. Batmanghelidj author of Water: for Health, for Healing, for Life

BUN-creatinine Ratio?

Understanding Clinical Dehydration and Its Treatment: http://web2.aabu.edu.jo/tool/course_file/lec_notes/1001221_dehydration.pdf

Dehydration in Children

Dehydration in Adults

3 Responses to Hydrate, Hydrate, Hydrate…

  1. […] the summer I posted my concerns over keeping Riley hydrated.  I suspect this must be a universal concern among caregivers of medically fragile children.  […]

  2. Dearest Stacie, fabulous information. With this heat it is perfect timing. I did receive a most wonderful surprise in my mail box this week ~ it was amazing timing to receive such a heart felt card.
    thank you for continuing to inspire me to reach out to everyone and anyone that may need a little motivation and inspiration. Hugs and Blessings. Happy 4th of July to you all. And huge hug to Riley for being him. xo C. (HHL)

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