Inver Grove Heights, MN

The Rouse Family

Benjamin Rouse
Infant-Related Illness

Ben has been suffering from chronic lung disease due to aspiration since March of 2018. He has been hospitalized twice including a stay in the PICU because of pneumonia. Ben aspirates thick and thin liquids and doesn’t truly have a safe feeding plan, because of this he frequently gets critically ill. He is currently going to appointments 3 times a week at Children’s Hospital in St. Paul to try and strengthen his swallowing to prevent aspiration. He has been doing these treatments since May and he is not getting better. His father and I have missed a lot of work due to his illness and are struggling to pay his medical bills. We still have a lot of specialist appointments coming up, and with cold and flu season around the corner, we don’t know how we will pay for another hospital stay. 

Mayo update

Ben is continuing to aspirate. It has been about 3 months since he had his cleft repair surgery at Mayo Clinic. We still are not sure why he continues to aspirate, and have been continuing treatment with Mayo Clinic. The winter months are the worst for Ben. His body is already working really hard to keep his lungs clear, so when he gets a common cold, it turns to pneumonia really fast. Ben has been sick for the majority of the winter. He is on a few different steroids to help him breathe. Ben isn’t able to go to daycare because of his condition, it’s really important he stays away from anyone who might be sick. So I am still unable to work. Please help us bounce! 

Mayo Clinic journey

Ben was accepted to the Mayo Clinic’s aerodigestive clinic in October. He now has chronic lung disease. They put him under to do a scope and flush his lungs, as well as a ph probe to measure if he is refluxing, which they told us he is.  They found Ben had a laryngeal cleft in his throat which would be the reason why he keeps aspirating. They did surgery to fix the cleft, although surgery was successful in fixing the cleft, Ben is still aspirating. He will now have a brain MRI as well as another flushing of the lungs and we will go from there.