Triple scope and then some.

Broc had his triple scope done today. We got to spend a fair amount  of time with every Dr before the procedure. All our questions were answered, the ones they could answer.

It took a little over an hour for everything.
ENT - Scoped his airway and it looked beautiful. Even the artery that they cauterized. You couldnt tell where the repair was. They removed stitch from his laryngeal cleft repair and that was healed nicely too. We did ask them to look in his ears as he has been complaining of pain on and off. There was really nothing the ped coukd do because they looked good and the tubes were open and working well. He had no signs of an ear infection. What they did find was blood clots behind the tube and lots of debri around the tube that was very hard. This is what was causimg him all the pain. His ears are still bleeding this evening but we hope they will settle soon.

GI - We did find the source of the bleeding. Yay!!! Because Brocs tissue and lining of his mucosa in his stomach and everywhere else in his body is so thin everytime we pulled back to release trapped air in his be!ly, his G tube would suction against the stomach lining and would cause lots of bruising which in turn caused bleeding. I feel horrible knowing that I was doing this to him. At least now we know and we can move forward from this. Just to clarify this had nothing to do with the artery rupture in his airway in Dec. These bruises on his lining were not there in Dec when he had his previous scope so things are definitely changing fast for our Buddy. They did take more biopsies to see if there had been anymore changes. GI is also still waiting to see if the Immunology team hasbany thoughts as to why he continues to get ilueses to see how it is related to his immune system.

Pulmonary - We informed the Dr of all the new episodes that broc is having od being out of breathe with very little activity. He said he was going to do some investigating and see if he could find anything. Unfortunately we think he may have. Its a good thing and a bad thing. When he took a further look into Brocs bronchial tubes he coughed really hard, but when he did that his bronchial tubes collapsed a lot. Meaning Broc has floppy bronchial tubes. This gives him a new dx of Mild Bronchial Malasia. The Pulm Dr has requested that Broc do some more testing similar to a stress test to see how his body handles the activity level and how well his body copes. Unfortunately when they put the scopes in for his broncoscopy his airway got very bruised and bleed again under the skin. Showing us once again how fragile Brocs tissues are.

His team here are very concerned about his declining health and would like to monitor him every 6 months. It also depends on what the biopsies show and the testing that he will have done.
Typically a child would get better and their health would  improve as they got older but unfortunately in Brocs situation that is not the case. He is actually declining  more the older he gets.

This journey with Broc is ongoing and we dont foresee an end in sight. The best we can do is give him the best quality of life we can. Maintain what we can and try and support best we can. He is an amazing little boy with an incredible memory and smart as a whip. He has a brother that loves him like no other. This journey is a rough one but we can do it with the help of our friends and family and of course our God, Jehovah.

Thank you for all the love and support you have all given us.