This next week I will spend my extra time rubbing on Ben Jrs belly and praying over him as we get ready for surgery on Thursday September 4th. Ben Jr is going to be having a feeding tube placed in his stomach in order for us to be able to get more calories, nutrition, calcium, protein, and his medicines in him without a fight. He sometimes gets severe mouth & throat blisters that hurt him so badly that he will refuse to drink or eat for days at a time. Kids with EB need extra calories because their bodies are constantly healing itself from blisters, wounds and infections, that it usually uses all the calorie intake for healing. We will travel to Orlando (2.5hrs away) to the Florida Hospital , that is the only place that we found that has a GI specialist General Surgeon that is educated about EB and has knowledge about this procedure with EB children. His name is Dr. William Raleigh Thompson. he is one of the best GI surgeons in the world and the director over the GI team at the Florida Hospital in Orlando. We will be going on Wednesday and staying until Sat or Sun until Ben Jr is comfortable and we are comfortable using and mastering the g-tube. It is a whole new adventure for us, we will have to learn more medical procedures to add to the pot. Since Ben Jr gets blisters inside his body and on the out side, this procedure will have a twist to it then a normal g-tube placement. They will sedate Ben Jr (your anesthesiologist plays a huge roll in this because if he/she is not educated about EB they can cause a lot of damage to the persons face) then they will cut his belly button sending in a camera, once they find the stomach, they will then send in a laser, cut the area needed insert a button, then close the area back up and stitch the belly button closed. Leaving a dime sized area open with a mickey button. This mickey button will allow us access to feed Ben Jr any time of day and night to help him gain weight. Just Google g-tube images and it should pop up. They will be giving him steroids after to help his breathing and lungs so his air way does not swell and blister from the anesthesia. So, before then we have a lot to do. Planning for our daughters who have school those days were gone, packing (it is like a truck load when your child has to take a half a house),my husband will have to miss work, brakes and rotors on the durango have to be replaced, and a lot of hard down praying. No parent wants their child to go through anything like this, on top of it all EB makes it so scary. One wrong move from a nurse or doctor can make Ben Jrs life full of pain and hurt for weeks. I was so sacred about the IV placement and how to keep it in, as you cannot use tape on Ben Jr, so they said they are going to stitch it to him.I worry about my sweet baby, I dont want him to hurt anymore then he already does. Not to mention the risk for infection. I know in my heart that we are making the right decision to help our son excel in life and the extra calories will help his skin grow, teeth, and bones stronger, and build his body weight and muscles up. Thank God for all your support and most of all your prayers! God Bless you all and thank you!!
Posted on: Fri, 29 Aug 2014 04:12:47 +0000
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