Two years ago in April I set a goal. I wanted to make it two full years with ZERO surgeries. This was after Brendan had 3 surgeries in a row which was hard on everyone. PERCS was his last surgery and I am still thankful we did this for him. He is still benefiting from it. I can't even believe it has been two years already. That time flew by. Brendan and I discussed this today after I realized we made it the full two years and we both agreed we should try for one more surgery free year.
We had his cardiologist appointment today. I have been dreading this since I made the appointment but it went slightly better than I had imagined. I couldn't sleep last night thinking about everything Brendan has been through and what more he will have to endure in the future. Two years ago he had his Atrial Septal Defect closed and for some miracle the umbrella device worked and he DID NOT need open heart surgery. I was shocked because we went in not knowing if it would work and he needed the largest device they make. Today he had his 9th echo and his heart is functioning great. Unfortunately there is a small leak around his device. Basically the device closes a hole he had (his valve was too short and did not open and close properly) and his tissue grows around it and seals it off. For some reason he has a leak BUT since his heart is functioning great and his right side is no longer enlarged we do not need to worry or restrict him in any way. The Doctor told Brendan there is no EXCUSE to be LAZY haha! No onto the bad news....the news that has set heavily in my own heart since last year. His Aorta is enlarged. Now this can be very bad and require open heart surgery and cause a lot of issues as he gets older. The Doctor said he is not overly concerned at this time and it may not get any larger but it is something we have to watch yearly. So the one Dr. I thought we would only see every 3 years continues to be a yearly visit and something that causes a rise in my blood pressure every time it arrives.
I must say Brendan was an absolute trooper today and is seriously a pro a these appointments. He dealt with the echo very well which can be uncomfortable and part of it actually hurts because they have to press on his chest pretty hard. He hates the EKG due to the stickers they have to put on his skin but we made I deal that I would take them off and he did awesome! He used to be that screaming baby through the entire hour long appointment and today he was this amazing 10 year old who amazed the Doctor because he remembered he wore a mask due to having a cold last time he saw him. Yup that is my kid!
So as I have been saying life gets easier but once in a while you still get punched in the gut. I still remember first finding out about his 'hole' in his heart and it was devestating after finding out he had brain damage and cerebral palsy. It was just another thing we had to deal with and I hate that he has to go through so much in life. He has endured more pain than I ever have. I am so proud of the child he is becoming and how much he can handle. He comes out of everything with the best attitude and never asks why he has to go through all of this or why his siblings never do. He just goes with it and also takes it day by day.
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