Sunday, September 25, 2011

Day 66 at LeBonheur NICU

  The past 3 days have been the most difficult to-date.  On Thursday afternoon we met with the Cardiologists (Dr. Stamps) and he painted a very grim picture for us.  Grant's oxygen sats had been trending down and options for surgery at this point were not looking good.  The final word for surgery would be made by the head cardio surgeon (Dr. Knott-Craig).  Unfortunately Dr. Knott-Craig would not be available until early next week.  Cathy and I began preparing ourselves for the worse.  Immediately after the meeting on Thursday, Grant's oxygen sats began to drop quickly.  We got a call at 1am on Friday saying we should come to the hospital quickly because they have done all they can do.  Once we arrived, they were putting in a larger breathing tube and that seemed to help some.  They gave him morphene, dopamine, a paralytic drug, and adavant, and a blood transfusion, to keep him sedated and still.  They were able to stabalize him all day Friday and due to his declining condition they were able to contact Dr. Knott-Craig on Friday afternoon to review the latest scans.  Dr. Knott-Craig decided that he could put in a shunt (either Tue or Thur) of this week that may help his condition.  This would not be the final repair, however, it would hopefully buy a little more time to explore more options for the long-term surgery.  If the 1st shunt works, they will likely put in a 2nd shunt a few weeks later.  Again, the shunts will only buy us time for Grant to get bigger and for the surgeons to determine what can be done long term.  His condition is one of the most complex congenital heart defects to repair.
    We are encouraged that they are moving forward with the shunts, however, sadly we are not 100% convinced that he will be able to have the final surgery that will ultimately repair his heart.  We know that the shunts MUST be done at this time to keep him alive.  Currently he is on a ventilator and lots of drugs to keep him alive until the shunt is put in this week.
   A shunt in a man-made tube that will direct blood from Grant's aortic arch to his collateral.  In the meantime, they have sent Grant's scans off to Stanford for a 2nd opinion.  There is a Surgeon in Stanford that had performed more of these surgeries than anyone.  The best case scenario is the shunts will provide extra time (weeks/months) for Grant to grow and hopefully his vessels too, and give the surgeons time to explore what, if anything, is possible long term.  We continue to pray for a miracle for our tough little boy.  He is a true fighter and I could not be more proud of him.  We find comfort in knowing that we are doing all we can do for him.  Thanks to everyone for your continued support, prayers, and encouragement.

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