Back Up

Today was Teresa's weekly Doctors visit at CHOP .    As we were getting ready to leave, the Doctor received  a phone call .  He hung up the phone , reached over to feel Teresa's head and asked the Nurse Practitioner to take Teresa's temperature.   He wanted to make sure she did not have a fever because he said she may have a heart .   She was the "back Up" .  The backup recipient is the person who will receive the transplant if "the primary recipients transplant  team" declines the heart .   The child who was the primary recipient was the same blood type and weight as Teresa but had been waiting a little bit longer than her on the transplant list .     He said he would have an answer in two hours if Teresa would receive the heart or not and suggested we go get something to eat as we waited. 

Well let me tell you , there was no way I could eat anything .  It was the longest two hours of my life.
As we waited,  a million things were racing through my head and I was a complete nervous wreck . Luckily , Ed had accompanied me on this trip.  I can not imagine having to wait  there by my self not knowing .  He on the other hand was very calm and had complete faith Teresa would be fine .
After two hours , we finally received the news that the other child had accepted the heart.

We will return to CHOP next week for more testing .  Teresa  came home today  wearing a heart monitor to rule out any arrhythmia she may be having . She has been having several episode where she feels very nervous and becomes very hot .   She also will most likely have to start with an NG tube .  She has not gained weight in over a year and she is becoming deprived of vitamins and nutrients.  As hard as we try to feed her ( it is a never ending battle), she has no appetite or desire to ever eat .  We have been trying to avoid the NG tube  but going into a heart transplant her little body will need a lot of reserve to fall back on .

Tonight Ed and I are exhausted and frazzled .  We are praying God will give us the Grace to handle this .  We are also praying for Teresa to stay strong .  She did not know what was going on today . To her it was just another visit and some special time alone with Mom and Dad. 

  Today another child received the gift of life , one family lost their childs life and we went home to continue to wait for  Teresa  to receive her gift of life. 

Life is so precious .  Enjoy every moment you have with your children !