(His PJ's say "Heart Breaker".....very appropriate!)
I finally received a call from Cardiology with a date for Mason's next appointment and ECHO. It will be this Friday June 12th. The scheduler said she apologized for the wait but they had to get permission from Dr. Sarrel to rearrange appointments and squeeze him in. So it will be 5 weeks from his last ECHO instead of 4 like we had planned, but she was actually booked until end of July!!
Then the scheduler said "Dr. Saarel would like me to go ahead and schedule in 4 more weeks to meet with Dr. Everrett" ( she is the heart failure/ transplant specialist). My heart dropped!!! She said Dr. Everrett was booked until September so she would have to get special permission from her as well to rearrange appointments. I remained rather calm until she called back within 10 minutes and had made our appointment on July 15th. Okay, so what would you think?...it took 2 1/2 weeks to get our June appointment......and then so quickly things were worked out for July!!! They must just be a bit concerned??!!
I am trying to think Dr. Saarel and Dr. Everrett are just trying to be ahead of the game but, honestly its hard not to think that they have lost hope that his meds he has been taking will lead us to seeing improved heart function at this next
What do I think? Mason doesn't seem to be improving. He still seems exhausted a lot (but still won't stay asleep very long)and his coloring to me doesn't look very good even on the O2. People tell me he looks good but, to myself I say "not really". Yes it makes me sad!!!
Also, this week he has had a cough and some tummy bug! He has thrown up more that he ever has (as well as 'blowing out' his diaper a lot more than usual). So there goes for gaining weight this week! I didn't even take him into to be weighed. I figured why bother myself with bad news. At least he didn't get dehydrated because he could still keep down breast milk most of the time. There's a bonus for still nursing I guess.
For now if you will join our family in praying for our little Miracle Mason. We are praying for a 'good news ECHO' and if that doesn't happen.... then,that we will be blessed with peace and a knowledge of what is the best path for our sweet baby at this time.