Oh, I wanted to add...EKG's didn't show anything for Kenny. When he was in the ER and in total heart failure his EKG was reading normal. A chest xray is what showed them that he was in heart failure... very strange.
Kenny's ejection fraction was at 14% for two years prior to his passing. At that time it was all of a sudden and was a shock! He was doing well, never sick, never any signs of fatigue, no headaches, nothing! Doctors marveled at how well he looked and acted. Still for the next two years he was doing well and it was a shock again because he went for two years on 14% EF.
It has helped me to be able to share Kenny's story and hopefully it can help others. Thanks for your kind words.
No problem, I can tell you it is important to keep a close eye on his heart functions....Ultra Sounds and MRI's. I believe heart meds introduced as maintenance are helpful. Kenny's ejection fraction was 11%, his heart was working so hard and sadly the end result was heart failure. Some signs he was getting into trouble were...swelling in his ankles and feet, gagging to the point of vomiting. The hard part is that these boys symptoms are sometimes masked. Kenny always said he felt fine and he looked great so it was always hard to tell just how sick he was. Trust your gut, get the best care possible and pray. Live one day at a time and try not to look to far ahead as it will spoil the present day. God Bless you and your son.
Mia! I don't understand all of it- honestly it scares me...
I go to Dr. Brian Tseng at Mass General. Takes us 2 1/2 hrs and I love his entire staff. I love Brenda but the travel is over the top. Wyatt is very uncomfortable with his compression spinal fractures and we are in and out
of the car with him... The nurse there is Cindy and her # is 617-643-2063 direct line... They have been great with us- let me know what you decide. We are on our way back there on April 13-14 for a full head to toe check.
Please be in touch- I work M-W-F. Call me Thursday if you can or call any evening! 312-9805. Take care Mia!
Are you sure that you didn't get my messages back?? Did you change you e-mail??? I definitely answered and offered to meet anytime and remember wondering why I hadn't heard back. Things have been hectic here too. What's happening with Sean? I'm not happy with Wyatt's status either but Sean is older--- what's going on???