Our sick kids story was a little bit different than many other stories, though. This is because we have a child with MCADD. Food intake is so critical with MCADD kids, especially when they are already vulnerable because they are so young (LB was 9 months old during this spell of illness). When they stop eating because of a tummy ache or when they lose nutrients in large quantities through diarrhea or vomiting, it is a medical emergency. We have some methods that we can take at home to help him along, namely feeding him a glucose solution called polycose and a medicine called carnitine, but when that isn't enough, we head for the hospital so that he can have IV support to help him safely weather the illness and prevent metabolic crisis.
If LB was unaffected by MCADD, like our older son, he would have had a spot on the couch next to his big brother these last few weeks. They would both have been drinking pedialyte, eating toast, vomiting in a bucket and waiting for the illness to run its course. That method is just a little too risky for LB, though. His body doesn't work the same way that his older brother's body does. Pedialyte isn't enough to keep him hydrated and nourished during illness. It doesn't have the sugar he needs. It doesn't have the carnitine he needs. His body would become hypoglycemic, his blood would become acidic and he would become very, very ill if he just sat on the couch with his big brother drinking pedialyte. We know this thanks to the newborn screening that identified his MCADD. His doctors know this thanks to the newborn screening that identified his MCADD. No one takes any risks with his health.
Every doctor we work with has said that it is safer for him to go to the hospital for IV support when he is sick than to risk him suffering a metabolic crisis which can have serious mental and physical side-effects, some of which could be irreversible. So, when LB is sick, we call the metabolic clinic, we heed the advice of our specialists and we head for the hospital. We stay in the hospital for a day or two until LB is eating well and no longer suffering from the vomiting and/or diarrhea that robs his body of essential nutrients. Then, we come home. LB goes on with his busy life of playing with toys, following his big brother around and making everyone smile. We are so grateful that we know how to keep him safe in this manner.
Sometimes people tell me that they can't imagine how difficult it is to have to go to the hospital everytime your kid is sick. While it is true that we have to juggle a lot of things (childcare, work, pets, household chores, meals, etc.) when we are in the hospital with LB, it is difficult to juggle all of those same things when any child is sick. Sick kids are tough no matter if they are sitting on your couch vomiting in a bucket or sitting in a hospital room with an IV. Sick kids are tough no matter if they have MCADD or are unaffected. I'm slowly learning that the divide and conquer strategy of me in the hospital with LB and Husband at home with our older son is just going to be the new normal for us whenever we get this kind of illness in our family.
In closing, we are thankful for:
- LB, our sweet, happy baby
- the newborn screening that identified LB's MCADD
- the doctors and specialists who have taught us how to keep him safe
- the hospital staff who have cared for LB during illness
- the strong network of friends and neighbors who have supported us during his recent illnesses
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