The boys have had a hectic few weeks
Published on Monday, October 13, 2014
Written by Sarah Kopacko
The boys have had a hectic few weeks. Jesse is having a lot of balance issues and toe walking, and Colin is having quite a bit of leg pain which is new.
Jesse has not had any procedures, but his right ear decided to start bleeding last week. The ear drum looks good, and there was no sign of infection... so the doctor was at a loss and he is on steroid antibiotic drops. They do not seem to be working, so we will likely be back at the pediatrician's office on Wednesday.
Colin had an endoscopy done with biopsies to try and figure out why he keeps bleeding into he Farrell bag. They saw a lot of inflammation that they thought may be gastritis, but the biopsies came back normal. They have still upped his prevacid from 15mg to 30mg a day, but we have no idea as to what the plan is now. He has been bleeding off and on for almost 16 months now, so we have to figure something out.
Both boys saw Pulmanology today and have new plans to try and get them breathing better. We are planning a "6 minute walk" test for Colin some time soon to see how his lungs function while moving around. The boys both have trouble breathing while playing, so we are trying to figure out if it is a muscle and/or lung issue. Colin did a lung function test (Jesse is too young) and is on the low end of normal function for those tests. The doctor believes he has asthma, so he is starting an inhaler treatment for that before any play/active activity as well as before bed. He will also continue continue his cough assist once or twice a day. Jesse's cough assist is going from once or twice a day to 3 times a day. If we cannot get productive coughs out of him during the treatments within the week, the doctor wants to up the in and out levels to get more productive coughs out of the treatments.
That is it for the update for now. Thank you for the continued thoughts and prayers! We hope you all have a good week.