Matthew is the youngest of our three boys. He has been diagnosed with Mitochondrial Disorder Complex I and III, Chronic Intestinal Pseudo Obstruction, FTT and Glucose Intolerance. He has been through countless tests and procedures in the past 8 years . We do not know what the future holds for him, but we are going to do our best to cherish every day with him. Stay strong little man.

Wednesday, January 19, 2011

We made it back from Boston a day later than expected, but we are home. We left Boston yesterday around 3. After 5+ hours of driving in an ice/snow storm, we called it quits and found a hotel for the night. The roads were better this morning, but still like a sheet of ice through the mountains. We got home around 1 this afternoon.:) Matthew's CT scan was scheduled for 8:30 yesterday morning. We had to be at the hospital by 7 :15. We waited for an hour in the waiting room before asking why it was taking so long. I guess that they forgot about us. We waited some more and asked again. Finally we were brought back to our room. Matthew had to have two 4 oz. cups of contrast 45 min. apart put into his G-tube. 8 oz. is quite a bit of liquid in Matthew's belly at one time. He also had IV contrast as well during the scan. Our 8:30 scan didn't happen until 11:30. Three hours late. Matthew was wonderful for the entire time and was very happy when it was over since it was his lunch time. :)

We saw the surgeon after the scan. She said that the scan did not show a fistula by his intestines. She said that it did show a very large distended stomach. Matthew's poor belly.:( This we already knew and doesn't explain the belly button drainage. She wanted to take a close look at Matthew's belly button and stoma to see if she could figure out what was going on. When she pulled back Matthew's bag, his belly button was again leaking. Both the surgeon and her assistant could not see where the fluid was coming from. they looked for any obvious sores or inflammation, but his belly button looked ok. So, we really do not have an answer yet as to why it's still draining. They put silver nitrate on it just to see if it would help. They also gave us some Aquagel to help absorb some of the fluid, so his bag would stay drier. If the silver nitrate doesn't work, Matthew will probably have to have exploratory surgery around his belly button area to figure things out. The surgeon said that he could possible have a stitch or scar tissue from his ileostomy surgery that may be "festering" infection. YUCK. As of last night, his button is still draining.
We were able to visit with Eithene. She was just waking up from a nap when we got there. Matthew got up on her bed and gave her his bag of goodies that he fixed for her. Eithene seemed to enjoy her gifts and loved her new baby pony. Eithene made Matthew a beautiful heart message that he hung on our fridge as soon as we got home.