Every time we make a decision, we wonder if said decision will
result in a positive outcome. There have been so many times along this
journey that the decisions have resulted in a domino game effect with literally
no end in sight. Along the way we have almost become numb to the negative
outcomes, I say almost, because
even though we say we are numb, we are simultaneously saddened and frustrated
with the choice that led to the undesired outcome. Despite the fact that
even though I can assure and reassure myself "we made the best decision
with the information that was presented at the time" it never quite seems
to soften the blow. However, there are definitely rare times throughout this
adventure that we happened to make a decision that 100% was unarguably the best
decision ever.
Usually the results of our choices do not
present themselves immediately because in the land of CDKL5 you can be assured
that the term patience will hold an entirely new meaning. Then one day
something will occur and it will dawn on you that "yes indeed that was the
best decision ever". The decision for us to give Sonzee a feeding
tube was never one we entered into lightly.
In summary, after months of little bear not
gaining adequate weight we
had a consultation for a feeding tube to be placed in her stomach. Prior
to her surgery she had a negative reaction to IV fluids that were ran too
quickly and almost
killed her. During that hospitalization, she was diagnosed with an
abnormal background on her EEG and Infantile Spasms that resulted in high dose
steroids and so the surgery was postponed. After many days of back and
forth between many medical professionals, it was decided that Sonzee should
have a PEG tube
placed. After the PEG tube was placed, we were uncertain if this was
actually the best decision for the bear. She was not gaining weight, she
was having severe reflux, increasing irritability, and difficulty with not
vomiting up everything she consumed. Finally, in May we hit our breaking
point and she was hospitalized for a month resulting in us leaving with an
intestinal feeding tube (NJ tube).
Sonzee has been discharged from the
hospital for one month and 17 days. She has grown at least 2 inches and
has gained at least 4 pounds. Finally, our little bear is getting
adequate nutrition and she is beginning to thrive in so many areas. I
look back on my concerns regarding this feeding tube adventure and fear was
ranked high, followed closely by wondering if a tube would even help or how
this would negatively impact her quality of life. So many parents have
asked me if we think we made the right decision in pursuing a feeding tube for
Sonzee, and I used to waver in my replies. If you ask me today how we
feel about Sonzee not eating by mouth and having all of her nutrients be given
solely through a feeding tube, we will answer "Undeniably the BEST
decision we have made. Do NOT fear the tube."
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