Taking a Breath

Thank  you all for your prayers for Emilia .  This surgery really caught us off guard .  We had no idea the infection was so bad .   She did great .  Dr. Standard removed the infected pin cleaned out the infection and inserted a pin in a new location to help stabilize the bone .    A few more months and she should be able to have the fixator removed and metal rods inserted , then only a cast for a few months.  The bone seems to be filling in and healing a lot slower this time as opposed to when she had her leg lengthened .   But she is handling it much  better now.

Mayzie looks like she has a long road ahead of her .  Last week Emilia was playing Frisbee with her . ( Frisbee and playing ball are her two favorite things to do . She walks around with her Frisbee in her mouth almost the entire day waiting for someone to play with her .  She also sleeps with it ). This time when she landed she slipped and twisted her leg.  We could tell right away she was in a lot of pain . She wouldn't put any weight  on it and she just laid around not even wanting to play .  Of coarse this happened on the weekend when  a trip to the emergency vet would cost hundreds of dollars , so we waited until Monday to see if it would improve .  We were hoping she had just twisted it .  On Monday she was the same and was still not putting any weight on it .  So off to the vets we went .   X-Ray, x-ray , x-ray and we have a diagnosis.  I wish it was as simple as just being broken but no... she has severe hip dysplasia in the left hip .  So off to the Veterinary orthopedic specialist .  No , she doesn't have severe hip dysplasia  in the left hip ... she has severe end stage hip dysplasia in BOTH hips ( bone spurs everywhere , bone on bone.. not good .)  So the bottom line ,  she needs hip replacement surgery .   We can not afford the $5,000.00 ( yes that's right $5,000) surgery  .  There is just no way I can justify going into debt for this when we are already so financially strapped for all of the girls medical needs.   The plan is to  have her rest, no running, jumping , going up and down steps for 2 weeks .  Treat her with anti inflammatory and pain meds and start joint  vitamins and herbs.   Since Mayzie NEVER exhibited any signs of hip dyspalsia  ( no pain or limping at all)before this incident  , we will  try to get her back to where she was before the injury , pain free and not limping .  We think she didn't show any signs of pain because she is so stoic.  She has been trained to help others , that's her job.   She is constantly looking for things to do or someone to watch and help.  When the girls are outside playing she herds  them into  a circle to keep them together ( She was not trained to do this , it is something she just started doing herself).  When Emilia came home from the hospital she ran right over to her smelling her and licking her and laid down next to her .  She could tell something had happened to her and would not stop licking her arm . ( OK , I know all you germ phoebes like me are saying really ?  But I didn't have the heart to make her stop .  She was simply taking care of Emilia the only way she knew how.)
It is ironic how Mayzie was trained to take care of Emilia and now Emilia will have to take care of her.  She has orthopedic problems just like her .  Maybe this is why they have such a  close bond.

Alex came home from school yesterday to help out with Emilia and said something that really made me laugh . ( he tends to have a very odd sense of humor) but this time I thought he was pretty funny .  " So we  have 5 special needs kids and now we have a special needs dog too? "  But I quickly reminded him that WE ALL are special needs , just in different ways .  We all have something  to learn from each other  and maybe God is showing us  something to learn through Mayzie .

So last week CHOP calls 4 times. When I read on the caller ID that it was from CHOP , my heart just about stopped .  On the phone was Dr. Shaddy asking if we would allow Teresa to participate in an NIH research study on children who receive heart transplants. But all I heard was " This is Dr. Shaddy from transplant ...(  I'm thinking do I cut him off and YELL "does Teresa have a heart ?") but I didn't  . I knew he would think I was totally crazy ( which I admit freely I totally am.  )  So I let him finish and at that point I put away my car keys, suitcase  and sat down and could breath again. ( yes , the stress is really starting to get to me. )
As he explained to me ,Teresa's care would not change in any way .  The group she would be in would depend on the heart she receives at the time of transplant.   The research study is comparing children who need plasma ferresses before and after transplant as opposed to children who do not get plasma ferresses . ( This is the process of filtering  the blood through a machine to remove all antibodies . PRA- panel reactive antibody -is the percentage of cells from the donor with which a candidates blood serum reacts. ). High PRA is not good .  In past years Doctors would wait and pass on hearts that had high PRA, but too many children were dieing waiting .  So now even if it  is not a good  cross match  Doctors will treat the children with plasma ferresse before and after transplant to lesson the rejection of the organ .  Children who have plassma ferresses have a %10 higher mortality rate after the first year.    The research study will try to pin point exactly why this occurs.
The question Ed and I were  having trouble answering was , do we wait and turn down a heart with high PRA  or accept it knowing it would increase the mortality rate .  The problem is Teresa only has a very short window of opportunity to get a heart .  If her valve leakage gets worse , her hematocrit increases ( it is already very high )  her Pulmonary hypertension worsens( it too is extremely high ) or she gets a virus , the fear is they would not be able to keep her stable and her window of opportunity would close permanently .
So how do you make that kind of decision with life and death ?  You can't or at least I can't . I won't . I am not in control , God is .  I know at the time Teresa receives her new heart it will be the heart from the donor that God has decided is for Teresa .  High PRA or not  it will be Gods decision .  So we told Dr. Shaddy that of course we would participate in the research study ( anything to help promote advancements for other children )  and that we would take the heart when it was Teresa's time .

This past weekend after we participated in the Donate Life  Run   we received a phone call from the community outreach representative  asking if they could use Teresa's story to help promote organ donation .  She had seen the poster we  made of Teresa hanging with all the other  family posters and thought her story would really help promote organ donation .  We go to the studio on Saturday to film Teresa's story .  We are so happy to be able to share her story and do anything we can to promote more organ donations.

She has come so far on this journey not by us but only by GOD.  I  have total peace knowing that God will give her the heart that HE intends at the time HE intends and give us the peace to accept it all.