Hello Everyone,
Sorry for the absence but we have just been enjoying each day with AJ healthy. It has been a good month with many fun days. AJ has been free from infection, his gtube site looks great and he is happy. His feet are pretty sore and he has resorted to wearing large socks instead of shoes but if that makes him comfortable we are fine with it.
Today we met with the ENT doctor. We love her. She takes such good care of AJ and she has experience with kids with EB. After talking with her we have decided to have AJ's tonsils removed. They are very large and are causing sleep apnea. Having a small airway to begin with, the tonsils only make breathing more difficult. He has had strep throat and infections that have attacked his skin and caused permanent wounds. We would likely prevent this from happening again. Having this surgery now will be easier on him than waiting until he is older.
Ok, now you hear what I keep telling myself as to why we have made this decision. I know we need to do this but I don't want to put AJ through it. It's very hard and I am dragging myself to this point. I am praying for a smooth procedure but his doctor has clearly laid out the risks. Because AJ's body scars so easily and openings want to close (think esophagus, airway, intestines, urethra etc) his throat closing shut is a major risk. His ENT said it is the worst problem that could be faced. When there are raw areas the tendency is for them to adhere together. She said it would be three months post surgery before we will be assured that the risk has passed. If the area should scar together, AJ would require a tracheotomy. That is hard. We have been to that point before and AJ pulled through. I don't like that looming over us again. I know I can handle the cares for a trach but I know how hard it would be on AJ's tender heart and emotions. So...we will lay it at God's feet where it belongs.
As a secondary procedure she may take AJ's adenoids out but she will determine the risk of doing so once she has removed the tonsils. She will also do an endoscopy of his airway to determine any damage due to his EB.
Next Wednesday, October 24th is the surgery date. He will stay in the pediatric intensive care unit after the procedure. I don't know how long he will be in the hospital. I am hoping for no more than three days but I know to be prepared for more. We so covet your prayers. I know God is present and working in AJ's life. I can trust God with his plans for AJ.
On a different note, I am struggling with where to have my other children stay while I am gone. I have three "almost" teen girls that I home school and I need to find a place for them to go or someone to come to my home. Please pray that it will all work out without too much of an ordeal.
Thank you again for reading our blog and for caring so much for AJ.
Barbara
Wow, Barbara; we will certainly be praying for this upcoming surgery. I can see what a risky surgery this is for AJ, and yet something that needs done (and definitely better at a younger age!!). We will be praying for a smooth surgery and recovery, no problems with excessive scar tissue, minimal pain for AJ, and peace for your entire family. Also that care be found for your girls. Will be praying and watchin for updates!
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