It's been a roller-coaster kind of week. We left for Boston last Friday. Saturday, we had a wonderful time at the Binkeez/Peaches Neet Feet Superhero party and then dinner with family and friends. The MitoAction walk was on Sunday and it was a beautiful, chilly but sunny day. They had a great turnout and everyone had fun. We stayed in Boston through Tuesday for a few appointments and tests . Below is a summary of how the appointments went.

 

 

1) Dr. F(renal) had talked to us about adding sodium to Matthew’s regimen but wanted to wait until we saw the other providers before doing so.

2) Matthew had an Uroflow test and Kidney/Bladder ultrasound done and then saw Dr. E. He said both tests looked pretty good. His bladder doesn't squeeze very strong but, he said he is able to empty it completely . It just takes a little longer to do so. His only concern was Matthew was not peeing enough during the day. He wants us to make him try and go more even if he doesn't void

) The contrast enema was ordered because Matthew has been complaining of lower abdominal pressure and that he always feels like he has to “poop”. He will sit on the toilet sometimes as long as 2 hours. According to the MGH radiologist and Dr. BG there is a fist sized/baseball sized mass in Matthew’s colon near his rectum. They believe it is either a mucus plug or impacted stool . One of the GI Fellows at MGH tried to manually remove it but was unsuccessful. Dr. BG is scheduling a procedure with sedation to remove the mass.

4) Matthew had an allergic reaction to the contrast on our way home from Boston. He broke out in a rash and hives  . He has been on Benadryl since the reaction and has been seen by his PCP who wants us to continue the Benadryl for the next 3 – 5 days. He was covered in hives for almost three days.

Matthew missed school Mon-Thurs , but was able to go back today . He will be missing more school next week when we go back to Boston.

This weekend we are going to try and relax and not think too much about the busy week ahead. We will also be going to Potsdam tomorrow to visit Bradley at college for Family weekend.