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Tuesday, December 6, 2011

Today is the Day



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. 

4 comments:

  1. Carrie,
    I am so sorry for the delay and all that goes with that. We will pray for rapid weight gain and successful surgery at the appointed time!!
    Praying,
    Meg

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  2. I really appreciate the update...we continue to pray for Ajay. I can relate to your momma-bear heart over them making him go through the unnecessary testing today only for them to cancel the surgery at the last minute! That is very frustrating indeed. At the same time, we know WHO is in control and can only trust that HE has Ajay's best interests at heart. HIS timing is always perfect.
    We will continue to pray for Ajay to gain weight and for his heart and lungs to work well together! We also are praying for the whole family...we know we know we know the stress and strain and pressure that can get overwhelming at times. May God's grace be poured out by the tubfuls on you all...His mercies are new every morning! He is SO faithful!
    Praying for Ajay in AL

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  3. Dear Carrie,

    I am so sorry the doctors put Ajay & your family through this ordeal. I can only imagine how frustrated I would have been to encounter the same kind of treatment when Ruby had her surgeries. I will pray in agreement with Meg & Lanie for Ajay to gain the weight he needs to over the next several weeks so he will be able to take the next necessary steps on his healing journey, and that you will experience joy & blessing as a result of the is unanticipated delay.

    Peace & prayers,

    Jenn

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  4. i am sorry for the surgery being cancelled....i honestly can't image the frustration you must be feeling....this is the bible verse i am memorizing this month with emma lael (formerly addison who was also adopted from NDFH sept. 2010)

    be joyful in hope
    patient in afflication
    faithful in prayer
    romans 12:12

    i am going to pray BIG that ajay gains 8 lb ;)

    andrea

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