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, October 14, 2012

Matthew started having a few issues with the increased formula rate over the past few weeks. 
 On October 1st we increased Matthew's feed rate to 52 cc/hour. On Tuesday the 2nd Matthew was seen by his PCP and was diagnosed with a double ear infection and possible strep. She started him on Zithromax for the infection. On Friday Oct 5th he woke up and his face and belly were swollen. Saturday morning , his weight was up 2 lbs from Friday morning. His face, hands, feet and belly were swollen. We turned the rate down to 51cc/hour and just watched him. Over the next few days his weight remained up and the swelling got better but we had to go back down to 50cc/hour of the feed. It took almost a full week for the swelling to be completely gone.
  Interestingly Matthew's potassium level on the 2nd or 3rd was 4.4( the best it has been in over a year). We had the labs redrawn Saturday the 6th because of the swelling. His potassium was now low at  3.0. He had labs drawn again on Monday and his level was back up to 3.8. (normal level). Dr. Fergusons office called concerned about the drop in potassum, asking if  Matthew had been vomiting? No he wasn't sick other than the ear infection and this strange fluid gain from nowhere. There was no other changes to his regimen. Dr. Ferguson had emailed us Monday thinking that we might need to try a mild diuretic to keep this from happening again.
  This fluid retention issue seems to be the biggest stumbling block that we are facing right now. Hopefully if we can get this figured out we will be able to advance his feeds and get some good nutrition in him. He currently is at 50cc/hour of the Vivonex TEN and is handling things well. We are planning on getting his labs drawn again tomorrow.
Also, this past Friday, we noticed that Matthew's Jtube is now leaking from the opening. It's over a year old and looks like now it needs to be replaced. We heard from Matthew's surgical office and they told use that they will try and schedule the procedure while we are in Boston in November. We will probably have his gtube switched out the same time as well.
We leave for Boston on Matthew's 8th Birthday on Nov. 6th. We will be seeing several of his doctors and having some of his annual testing done. We will be there the 6th-10th.
On a more positive note, Matthew decided that he wants to be a Mighty Matthew Ninja for Halloween this year. Since he cant eat the candy, he will be handing out candy again this year at a few of our local town events :)