May 26, 2017
when the heart breaks it's not always physical
For the last six weeks, we have noticed some significant changes in Josh. He has become moody, angry, sad, and extremely tired. We have looked into all kinds of reasons, had many talks with him and yet it persists. His largest complaint is being too tired to keep up with the other kids at school, causing them to not want to play with him and leaving him to be alone through the recess times. It is enough to break your heart. It came to a head this week and I reached out to our neurology team to see if maybe the medicine he is on would cause the anger and moodiness that we are seeing, but they disagreed and told me to contact his cardiologist. So, on Wednesday morning I wrote an email to our cardio and explained what was going on. She called us in immediately (immediately in the hospital world was actually today at 8 am). My heart sunk, I won't lie. I was really looking forward to not seeing her for a year. However, that is life. Everything must be looked at through the lens of 'is his heart okay?'
So, today we went for the ECHO and EEG. After the tests, they paged the doctor and she came right over. Her news was both good and a bit sad. There has been no physical change in Josh's heart since his last ECHO. (GREAT NEWS!) Apparently, she had read my email and expected the ECHO to show that one of his two faulty valves was no longer functioning. So yes, this is good news!
Then we talked at length about how many kids with a heart like Josh's come to an age where they start to become aware of their body and the limitations that their body has. With Josh being the competitive type it would be compounded for him. As he begins to get excluded from things he enjoys because of his limitations (by the other kids, not by us or himself per say) she believes he is dealing with a form of depression, causing the anger, the sadness, the tiredness, the frustrations and explosions we are seeing. She thinks this is a mental health issue and not a physical one per say. This is the sad part of the meeting today. I am thrilled that his heart is okay for now, but I am so deeply saddened that he is struggling right. We have a meeting with a social work clinic to get him talking with someone about his feelings about his condition and his frustrations surrounding that. She also suggested a psychologist.
I find myself relieved, but heartbroken at the same time. I hate seeing him suffer in any capacity, both physically and mentally. I just want to keep him home with me in my arms where I know he is loved and protected. Leaving him at the school, watching him trying to play basketball with kids who wouldn't pass the ball to him, kids who kept fighting over who 'had to take Josh on their team, watching the sadness on his face... if I am honest it made me want to grab him and take him home. Teaching him to face his limitations, to cope socially, to deal with the hurt feelings is harder than even watching him face the pain of open heart because at least with the physical pain you know that there is hydromorphone and that the pain will end.