I wanted to count the number of posts that I have written that
involved decision-making, and then I realized there were far too many to count.
The majority of our situations involve making choices between two unfavorable
options, yet deciding which will hopefully
be the least disruptive to whatever balance we have currently stumbled upon.
I know deep down the results of our choices are not based on whether we
made the right or wrong choice, but it never
makes me feel any better when the outcome is not what we had hoped.
Here we are again
at our friendly little fork in the road. This one both Sam and myself saw
coming, so we have talked about what we think would be best for some time now.
However, discussing the potential scenarios and actually living them are
entirely different. I always think I am prepared until the day comes that
the doctor looks at us and says, "I feel comfortable and I think it is
time that we go ahead with XYZ, now you and Sam have to make the final
decision". I do not know why all of my confidence flies out of the
window and the panic attack sets in at that moment, but it has happened every
time without fail.
When Sonzee was
placed on intestinal feeds back in May, it was to save her life.
Thankfully it did the job, and so making the decision to have a tube come
out of her nose and go through her body was not even a smidgen challenging.
Placing a tube on her face went against everything I had wanted for her,
knowing how much it would bother her, knowing that it can cause feeding
difficulties in the long run, knowing that it would be an attention grabber
while she was out in public and cause excessive staring. She has lived
with a tube on her face for 6 months, and while it is not ideal, we are all
used to it. Truth be told having a blinking sign indicating that I am
aware something is wrong with my child actually makes me feel comforted while
we are out in public.
Today we were told
that she will not be starting stomach feeding in the foreseeable future and so
her GI team feels comfortable with moving the tube off her face and changing
her stomach tube to a stomach/intestinal tube. It is not to say her
stomach will not work ever, but CDKL5 has not been kind to her GI system.
We have wanted this tube relocated for so long; I am unsure why I am nauseous
at this thought. I know there is a part of me that is sad that her
stomach was not able to start working again by this point. I know there
is a part of me that worries once we do this, it never will. I know there
is a part of me that fears this "outpatient" procedure will go
completely wrong, despite the fact that "complications are rare AND it is
outpatient". I know there is a part of me that worries this will
only aggravate her stomach more, causing her more pain and discomfort and
constant venting (releasing the contents of the stomach so that they don't just
sit there). I know I am afraid of tipping the boat since it has been
rocking already for 6 weeks and we are finally getting our happy bear back.
What I think is my biggest challenge right now is knowing what our answer
is, but fearing the outcome.
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