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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