Monday we spent the day running around getting ready for the 24 inches of snow they called for in Southern New Hampshire (we ended up with 33 inches). Besides the food and water, generator for heat, we have another necessity that were need above all but were unable to secure, Andrews medication. In the past 3 years Cyclic Vomiting Syndrome has sent us to the hospital over 30 times. Change in barometric pressure and childhood excitement typically sets off a cycle in our house. What is more exciting for an almost 8 year old boy than 2 feet of snow to FINALLY build his snow castle he’s been planning all year. Every holiday, and every birthday are spend this way…… in the hospital…….
Andrew was able to go outside in the snow in the morning (sometimes you just gotta live). At 2pm the migraine hit, we thankfully were able to get the medications that we had in the house into him. We know that without the missing med he would most likely end up in the hospital or at least down for several days. We were blessed this time and he was only down (meaning unable to move, eat, drink or talk) for a total of 14 hours! We were able to keep the throwing up at bay and no vomiting the typical 6-10 an hours for days on end. What we were not able to do was much of anything for the relentless nausea or pain that goes along with it. I spent the whole nigh by his side as he would grab for a towel to throw up on for dear life that never actually ended up happening.
I had explained to him that we have gotten closer to 3 ft of snow and would be unable to get him to the hospital as we typically do. There were load of post reminding people if you have an emergency to call 911 and do not attempt to drive in the storm. He easily becomes dehydrates to life threatening levels very easy and vomiting blood from all the retching… I prayed to God I would not have to call 911…. because trying to explain to them this was not a virus and needed prompt treatment, was probably not going to go well. Cyclic Vomiting Syndrome is a rare disease and children with it often spend years of it being dismissed as a virus or something they ate. CVS is thought to be a migraine variant, and some believe an mitochondrial dysfunction. Whatever it is, it’s not a virus, and its not something you let it run its course and watch idley.
Around 4am on wed he smiled at me and said “Mom, we did it, we made it through the night and did not have to call 911” He was right we had, THANK GOD. I ‘m glad that he knows that he is not alone… that I am always there to help him get through what feels impossible. As someone recently shared with me Validation is a treatment…. and he knew he had our support and assistance… so many other children and adults are out there not dx with CVS because of lack of knowledge are still out there suffering alone.
Caregivers give so much…I would not have it any other way but it does take its toll….I had become worn out trying to get his other med on hand for the last week spending hours on the phone with insurance and dr offices and taking care of 3 other sick kids in the house as well. And spending the whole night up making sure that when 1 med wore off I was there to give another dose. It worked… he never got full blown cycle. I however ended up with the flu full blown because my own reserve was low from lack of sleep.
I just wish others understand what CVS was so that there was not the added burden of guilt that throwing up is an emergency and dehydration is huge. CVS kids often cannot just take sips, and very often need more than Zofran to keep it in check and prevent hospitalization.
Luck would have it I just got a call from our neurologist’s office.. he’s down with the flu as well… so I guess I will be praying to get through the next 2 snow storms like we did this last one…. Someday I hope it will be different.
And yet again comes another 2 feet of snow.. I love New England….:) And I’m still praying this storm goes better than the last…
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