I recently blogged about the day my son Shelby was born. His actual birthday is May 21st. I have had him on my mind alot lately as I always do more so around this time. He lived from May to October 31st and died on Halloween morning of that year! But there were so many stories in between that time!
Today, I was remembering the day that I took him home and what happened shortly after he was home! I knew that he had the same disease that I had already lost a child too! I knew the statistics! I knew the odds! But I also had such an optimistic outlook...I truly had faith and believed that Shelby could beat the odds! I believed that a miracle could happen! I lived every day, and made every medical decision with that in mind! I believed that if it be God's will...that he would survive!
I had the experience of my daughter to compare to and know what things I wanted to do differently! One of the crucial things for an EB child is the nutrition. So that they have the ability and energy to heal their skin! Because this disease is so rare...It was normal for any Dr's to not know how to care for these children! However, there is a National Registry in North Carolina for the Epidermolysis Bullousa disease that I had to reach out to. Through all of my study and research I felt it very necessary to put him through surgery to receive a Gastostomy tube (G-tube or tube that bypasses other organs straight to the stomach for enternal nutrition) I felt that if I could get a jump on it and keep him from "failing to thrive" that he could have the means to heal his body and be stronger to survive!
I remember the day of surgery, how hard that was to hand him over to the doctors not knowing if he would even make it through the surgery! Anything you do to children with this disease is extremely high risk. I prayed and cried and cried and prayed some more when they wheeled his tiny little body away on the bed! Those were the moments that were always the hardest! He was gone much longer than they expected because everything that any medical person learned was out the window with EB. The nickname for these kids is... "The Thin-Skinned Kids." You can't put anything on their skin and you have to try and be as evasive as possible as everything you do will create a blister and probably be a sore for life! They called during surgery to talk to me! Man, that made me sick to my stomach! They said, "your son is still alive but he seriously needs to have a tracheotomy while we are doing the gastrostomy" I of course said to do whatever was needed but I knew this meant more unhealed skin which causes major risk all by itself! Had they not done the tracheotomy he would have died from sloughing skin blockage in his airway. He survived the surgery!
If you can imagine even taking a cotton ball and rubbing their skin it will create a blister! The reason the type of disease that my children had was fatal was because the inside layer of skin had a defect or missing gene..so their whole insides and normal organ functioning creates blisters (actually open raw skin) So breathing in the lungs, swallowing, crying, blinking, urinating, anything that causes movement internally was destroying the skin inside their body! On the outside was the same, however due to large sores all over caused from normal living they look like they have been burned. A normal dressing change took me hours. Upon completion of the dressing change it wasnt long before I had to start all over again as to keep the risk of infection down it had to be done at least three times a day and hour each time! Each time was excruciating pain for him to go through. Sometimes I had tears streaming down my face as I performed the dressing changes. I had to do what I was doing but it hurt him so much! I often thought if I could just take on his pain! To watch your child suffer and not be able to do anything to take it away or make it better is one of the HARDEST experiences ever in this life!
I continued to faithfully take care of him round the clock daily with hardly any sleep for the 5 1/2 months that he lived! I learned that it was NOT God's will for him to live here on this earth with us as he peacefully left this earth. I learned to be grateful that he didn't have to suffer anymore. As much pain as he lived with it was a blessing to know that he could live with our Savior and not have to hurt one more day! I have learned so much from losing him and continue to learn from all of the experiences that I remember at different times in my life! It is not something you would ever choose to go through but the years of lessons that I have learned are unique and special to me! It has taken me many years later to be able to write about all of these experiences. My comfort and peace comes from my knowledge of eternal families and that I will see him again!
I am finding joy in the recall of my memories and in the continual lessons of life.
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