In two weeks, Chille will have his surgery. He will have more of his leg removed (last time was a 9cm by 4 cm area with over forty stitches - this time will be much less hopefully) and the ENT and cardiac team is going to go in and try to fix some important things - he has a paralyzed vocal chord that is getting drastically worse and they are going to put in an implant to close his vocal chord permanently half way/he may have a laryngeal cleft that the team is prepared to repair if he has one/ and they are going to try to tweak other little defects that attribute to his pneumonia tendencies. There are three possible outcomes that Chilles therapists have been preparing Chille for every day. 1) He may wake up following surgery just like he did with his surgery 10 weeks ago - which is the best case scenario. 2) If they do have to repair a cleft, there often is so much swelling with everything that he will be intubated and put into a medically induced coma for up to five days while the swelling in his throat goes down. There is a system that has been set up and rehearsed by Chilles therapists - we made a large calendar of boxes that is about 2 feet by 6 feet so that as soon as he opens his eyes, he knows that box means his surgery day and then the (up to) five boxes will have the days and dates and a funny sleeping face that he picked out and then a sunshine we affix the day his doctors extubate him. 3) this is the most traumatic outcome and the one most practiced - bc of his vocal chord surgery, he may be awake but still intubated with a tube down his throat so he cant talk at all. This can cause panic in kids like Chille so his therapists have practiced this and every night, Chille and I practice at home. He has custom made (by his speech pathologist) laminated cards with things he can point to that he wants to communicate, etc. This isnt high tech bc hes most likely not going to be interacting much, but hes prepared to ask for a different plushies to cuddle or where is my mom or Im in pain, etc. Those are the three scenarios that can happen. In addition, he will still be totally bedridden for 10 days and unable to move bc of his leg surgery just like last time. My point is that Chille is very well prepared for Nov. 6 and I have been working on this with him and his specialists every day. He is ready. He knows what is happening. So today, when I saw that his giant pre-op folder arrived in the mail for his surgery in two weeks, his seventh surgery in his life, why did I burst into tears? Havent I been prepared for all of this, too? It cant be denial, right? Either way, I think someone should run out and get me a cinnamon roll.
Posted on: Fri, 24 Oct 2014 15:01:32 +0000