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.

Sunday, April 19, 2015

Spring has finally arrived here . The snow has melted and buds are on the trees. I would like it to be a little warmer, but its better than it was a few weeks ago. Matthew has been out a few times with the warmer weather. Spring is his favorite season.

We were in Boston last Tuesday through Friday for Matthew's GI appointment and his tube change surgery. His GI appointment went ok as far as his growth goes. He is now 10 1/2 yrs old, 46 inches tall and 40 pounds. :)  He had an x-ray of his abdomen which showed stool in his rectum. Although he has an ileostomy , he should pass small amounts of stool normally every few weeks or so. We have been a little concerned since he has not passed any stool in over 6 months. He had a fecal impaction removed surgically  at the beginning of October and has not pooped since. It looks like the stool is again collecting in his rectum. We will have to follow up with GI if he is not able to pass it using suppositories( they typically don't work on Matthew).
In true Matthew fashion there was a problem with the tube change. We spoke to the surgeon who said the tube change took longer than expected due to an issue with the tube. He said Matthew did well but the tube they were going to use tore while he was checking it. There is a metal piece that is used to flatten the tube when it gets inserted. The surgeon put the metal piece through the tube. Luckily he checked it beforehand, otherwise he could have put the metal piece through the intestine. Part of the delay was them trying to find another tube that was similar to the damaged one. They didn't have the one he was supposed to get so they were forced to insert a different brand. Matthew has used this brand before but it gave him problems with infections and granulation tissue growth. He's had the new tube for four days and he's already having issues with leakage from the stoma and skin irritation. Hopefully this will clear up but we will be contacting the surgeon's office to let them know what is going on.
We go back to Boston in a couple of weeks to see Endocrine and Physiatry (Rehab doctor). We'll be meeting with the Endocrine doctor to discuss some concerns we have with his glucose. We are hoping to allow him to eat some soft foods and clamp his G-tube. In the past when we've done this his sugars get really high. We want to have a plan in place if we decide to do this.
Matthew is going to be going to middle school in the fall and we will be meeting with the rehab doctor to see if there is some things we can do to help his endurance. We are looking at Matthew having a shortened school day. He will also continue to use his power chair to travel throughout the school like he does now. He will need to focus his energy on his academics since he will be switching classes, and will have more work to do. It's hard to believe that he is almost out of Elementary school.

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