Since Noah's broken femur it seems we've just seen issue after issue arise. His neck is always tight and he has been prescribed diazapam for pain.
His hip is completely out of socket bow making his pan levels high and sadly the only choice I see for him now is surgery. It is so scary since I have to compromise yet another time and subject him to go under,this time more than four hours.
My biggest fear being of course his body is not strong enough to make it through surgery and more than that heal and get better quickly. No one can calm my next crazy as it seems I am in one endless panic attack until this happens.
I lay awake and find myself pleading with the fear to just give him more time in this world. I hate the fact he has been under so much and just when I think It's over a bigger surgery is around the corner.
I absolutely hate this disorder. I hate every part of it. From day one worrying about what the future will hold and now today worrying about how much he has already gone through and asking how much more his little amazing body can tolerate.
My fears sink in late at night. I feel the tears in just eyes and the feeling of wanting to run and scream and just sheer panic comes over my whole mind. It's an endless cycle.
I know his brother has been stressing this as well. We've talked about the consequences and I feel so bad at times River has to deal with so much because his weak father decided to take the easy road. There is a special place for father's that abandoned children both emotionally and financially.
All I can do is just keep my head up and know in my heart this is not a decision to put off. His pain is so bad he surely could not live much longer in that condition. It would take an even bigger toll if we declined to help him.
Currently the scoliosis puts pressure on his already under developed lungs so I just keep with these nightmares. They have kept me up for a week now. Staring at the ceiling tears rolling down my face and fearing he will never be out of pain or worse never wake up after surgery.
I hate schizencephaly. Hate it!