A Long, Not So Good Day

Mason and I left the house at 5:15am this morning to head for Primary Children's. We had a 6am check-in. But of course the anesthesiologist didn't come and take him until 8am! Originally today had been scheduled just for his sedated echo, but I was able to get Mason's ENT, Dr. Park, and his cardiologist, Dr. Saarel, to coordinate so that he could get new tubes placed in his ears under the same sedation as well. It was great that they were able to work that out for us. Cardiology took their portable ultrasound equipment up to the OR to do the echo before he had his ear tubes replaced.



The good news of the day was him getting his ear infections taken care of again. And when you've been through everything Mason's been through that was a breeze for him.



After waiting a couple hours in post-op for him to recover from his sedation we went down to cardiology for his appointment with Dr. Saarel. This is when our day became a "not so good day". I was hoping to hear a reason for his "blueness" and his heavy breathing etc... but not the reason I was given!! His echo not only showed moderate to sever leakage in his tricuspid valve but also much lower function in his heart. The function is basically how well the heart squeezes. So this is not good! Mason has always had pretty good function. This news was unexpected. But as I always say with Mason "always expect the unexpected"!




So what does this mean? When the heart is not squeezing well it is considered to be going into heart failure. The doctor prescribed 2 new medications for Mason to help the function as well as the overload on his tricuspid valve. Our hope is that this will improve his function well enough to be a candidate for the third surgery "The Fontan" down the road. As of right now with his poor heart function he would not be able to go on to the third stage. (Even if we chub him up.) The plan is to do another echo in 6 weeks to re-evaluate. If it has not improved there is one more medication to try (which usually doesn't help much for HLHS kiddos).




Then if not, then what? They would turn us over to the Transplant Team!!! That "T" word has worried me since he was diagnosed 16 months ago. I just never thought we would have to turn to that option. I know I have seen miracles with babies (& children & adults) lives being saved by transplant especially since we became involved in the "Heart World"! But I also have seen sad stories of those waiting for transplant (or getting a bad transplant ) and their time runs out!! I will just pray that my little Mason will continue to be one of the happy miracle stories.




Having said that, I know Heavenly Father has a plan for my Mason! I just hope and pray that plan leaves him hear with us for many more birthdays to come. Please keep him in your thoughts and prayers at this time.





Just a little sweet story from today: I had dropped Mason prescriptions off at Primary's pharmacy and went up to the third floor to find a quiet corner to feed him while we waited.
As I sat there the news about his echo began to really hit me and tears began to roll down my face. Then a lady came up to me, put her arm around me and said "I am glad to see there are other sad moms here too. I thought you might need a hug". As I looked up to say"thanks" I saw that she was pushing a darling little bald headed girl about 5 years old around in a wheel chair. I assume she is a cancer patient. We both said good luck to each other and she continued on her way, Today, I am grateful for that sweet stranger who reached out to me in my time of need! I hope I can pay it forward someday!