It has been an “OK” day. Brently had surgery 2 weeks ago this past Monday. He had to have a G-tube – (feeding tube) revision because of infection that spread throughout his abdomen due to some complications in changing out the tube. He is home bound for 5 more weeks due to more infection and I can’t risk him getting any worse.
While in surgery, the Dr. came out to talk with me and said “The infection has spread throughout and may have caused a Shunt problem and we need to do a series of test on his VP shunt”. My thoughts were that we just may be in for the long hall on this one…. Brently usually never gets sick and him facing these obstacles was reminding me of Brandon and all the sickness he went through so my mind was fluttering in all different directions. The tests were done and the waiting period is some of the most crucial moments. For me, it is where time stands still. I didn’t get but maybe 3 hours that night. My mind just wouldn’t stop thinking and worrying if the shunt has malfunctioned, that is another surgery on top of all this with the G-tube. I just couldn’t sleep so I paced the floors, prayed, walked downstairs to the lobby and prayed some more and let my mind relax and focus and let God just speak to me. We made it through the night and I couldn’t wait. The results came back that the shunt looked good and no issues that the tubing that is connected to his brain that flows into his abdomen were functional so I was so happy and relieved and again thanked God for it all. Even though he is a little teenager in a wheelchair and looks to be healthy, his immune system is not as strong as most but we have plans and are of course going to be careful but also have fun. He is ready to go camping and be outdoors. We plan to travel this summer and one of the places we are excited about is Minnesota. We are having a reunion of all the L1 syndrome families from all over the world. 14 1/2 years ago, I was told by Doctors that I was the only family to have this type of syndrome and to have 2 children at that so you can only imagine how excited we are to meet other families like ours. Brent is loving school this year but missing being out right now due to these few steps backwards but he continues to have a smile on his face and laugh like no other! Love this boy right here!
He Is Simply Amazing!