Ajay awoke with a smile, not really since he hates mornings...,as I tried to explain today is the day were traveling to have his heart fixed. He looked at me and signed "car" as he does like to go for rides in the car. He quickly became a bit more pleasant, as I packed up the car with his last minute supplies. We traveled to the hospital for all the preliminary tests at 6 am this morning, which were needed prior to his open heart surgery tomorrow.
The new hospital was amazing, state of the art and only opened 2 whole days! We were there 6 hours, and were told surgery is canceled. Ajay has lost 6 lb. since October and has not gained an ounce since his g-tube surgery on the 11th of November. Although devastated, I am more frustrated beyond words... no one knows the planning involved in all of this....we moved Christmas and celebrated on Dec 3rd, planned and prepared meals, changed jobs schedules, lined up "help" for the other brothers, hotel/lodging reservations, informed so many people of the needed prayers, a plethora of doctors appts to ensure accuracy of the decision to operate sooner than originally planned, etc. and they assume its not a big deal to cancel...like I ordered a pizza or ordered flowers and will be back later to pick it up....PLUS, they insisted that we take every single test today, and didn't tell me until the end of the tests that surgery was canceled. I felt as though they had significantly wasted my time, and put Ajay through the ringer unnecessarily to only be sent home. These are the same exact tests that the cardiologist does every 2 weeks. So, they decided last night (yes LAST NIGHT) that Ajay's surgery would be risking his recovery time, and overall survival, and felt it was in his best interest to wait 6 weeks for Ajay to gain some weight. They said they wanted to see me in person to see if I had any of the same concerns. I told the doctor I would have appreciated a phone call...(The cardiologist I saw on Monday, approved the surgery and said nothing about his weight loss concerns, as well as the GI specialist on Wed, who also voiced no concerns....the ONLY one is who had voiced concern was the Pediatrician who said to me on Fridays appt, "they are all okay with the weight loss?" "and "they are still going ahead with the surgery?" I dismissed her concerns, after-all, the cardiologist was the specialist!!!)
We are at a catch 22 here...if Ajay doesn't gain weight, we will need to still have surgery because of the severity of his narrowing collaterals (that can't wait til summer) that can cause many many complications, on top of the fact that his entire right lung is alone circulating blood to his entire body. The left lung and side of his body was the area that they needed to concentrate on Wed. surgery. So even in 6 weeks we could still be at greater risk for his overall outcome if he doesn't gain weight (and it isn't just a feeding issue anymore it would become increasingly life threatening).
I hope and pray that Ajay will be able to gain the weight needed to heal for his up coming surgery, although no dates have been set. I just returned home and thought you all would be wondering how Ajay is doing.