We are back from Boston. The big team meeting was cancelled late Friday afternoon due to our GI doctor not being able to attend. He claimed that he didn't know about the meeting even though the entire team had confirmed this meeting weeks ago. We had a few other appointments to go to in Boston the same day , so we went just the same.
Matthew saw ortho for the bumps on the back of his heels. They sent Matthew for x-rays of his feet. They said that his bones looked good but that he has bursitis on both heels. They said that his AFO braces did not cause the bursitis , but that they needed some padding to protect his heels until they heal. The most common cause of bursitis is overuse of the area affected. In Matthew's case he is probably harming his feet with his current activities, even though he is less active than typical children are. They are hoping that the bursitis goes away in a few weeks with rest and not over doing things.
We had an informal appointment with his kidney doctor. He has been great with us and we really like him. He is going to talk things over with his nutritionist and see if we should increase Matthew's diuretic or try and increase the formula volume slowly again. He also recommended that we make a follow-up appointment with Matthew's urologist to discuss the absence of "feeling the urge" to urinate. Matthew usually only urinates twice a day and only when we make him go. If we don't remind him to go, he just wont. Last week , he went over 24 hours without urinating and didn't even realize he had to go. His bladder is very large, and he produces such a small amount of urine (no more than 200 cc/24 hrs).
Also, after meeting with two members of the PACT team, we decided that we will be getting a new GI doctor. Our current GI doctor is almost impossible to reach and hardly ever gets back to us or answers our emails. This is a big problem since most of Matthew's issues are GI related. They agreed that we needed someone who would be able to be involved more in Matthew's care and treatment plans. We will keep our old GI doctor only for motility issues.
After our appointments , we stopped by the Boston Marathon Memorial site where Matthew placed a small lollipop bouquet on one of the trees. He also left a small message of hope on one of the signs. We also were able to have a quick visit with our friend Sarah who is currently inpatient. :) We are bummed that we were not able to fit in a visit to see our other friend Chelsea who is also inpatient. Time got away from us, and it was too late to see her. We needed to get home. :( Chelsea, we promise to see you next time :)
New Pictures on :
Deputy Mighty Matthew's slide show;
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 few 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, May 12, 2013
Sunday, April 14, 2013
Matthew's follow-up team meeting in Boston is on April 29th. Terry and I are planning on attending. It will be a busy week for us . Boston on Sunday and Monday; Bradley has surgery on his foot on Wednesday ; Confirmation on Friday for Bradley; celebration party on Saturday; and back to Boston on Sunday and Monday for more appointments.
Posted by nyveggie at Sunday, April 14, 2013
Tuesday, February 5, 2013
Thursday, December 27, 2012
Sunday, October 14, 2012
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.
Posted by nyveggie at Sunday, October 14, 2012