6 More Months

Many of you know that Elizabeth was born with Truncus Arteriosus.  You can read about it here.  She was born with a three chamber heart that required open heart surgery when she was born to re-plumb it so she would live.

We knew when we took her into our home that she would need open heart surgeries every so many years for the rest of her life.  The reason being, that the only way they have found to save these children's lives is to use a homograph (piece of cadaver or pig artery) to re-plumb these children's hearts.  Dead tissue does not grow with a growing child.  Dead tissue is foreign tissue to these children's bodies so their bodies fight it.  These homographs can get pin-holes in them and tears or as happened to Elizabeth's last one, it calcified and crumbled in the hands of the doctors when they removed it.  Praise God for taking good care of Elizabeth and she was not harmed by any of it.  She lived.  Open heart surgery is serious.  When she was an infant she went into cardiac arrest back in her room after the surgery and they had to work on her a bit to get her stabilized.

The repair she had at birth held up until she was four (above photo).  At four years old we handed her over to God, the heart surgeons and Egleston Children's Hospital, to replace the worn out and to small homograph they had put in when she was born. The new repair has lasted all these years.  It has been a miraculously long time for one to hold up like it has. 

Elizabeth goes to her Cardiologist every six months to have an Echo-Cardiogram and EKG to check the state of her heart.  To check the presures in the chambers looking to see if the homograph needs repaired again because it is narrowing and to small for her heart to pump the amount of blood needed to her lungs to be oxygenated for her to live...  Or to check and see if it is deteriorating and getting pin-holes in it or tears.  In which case they would do a surgery to replace it as well.

A year ago when Elizabeth had her visit with Dr. D, her Cardeioligist...after him reading all the results, told us that it was getting closer to the time she would need a repair.  That her heart was becoming enlarged on the side that is pumping thru the homograph.  Showing that that chamber is working harder to pump thru the homograph and that it is narrowing and becoming to small.  The levels were still in the safe range but we needed to be prepared, that at one of the nexts visits we would be having to do a heart cath to go in and check presures and everything out.

Last visit little had changed so praise God we were told to see him in six  more months.

I have noticed Elizabeth tiring more easily and she has turned blue on us this summer while playing once.  She is choosing to sit and play a lot more and do quite things.  She also had her O2 levels drop lower than normal during a recent respiratory virus.  They went down to around 91 and stayed there for the hardest part of her illness.  I fought the urge to put her on oxygen.  We have it in the home and usually put her on it if she goes below 91.  So we gave a lot of breathing treatments and kept a very close eye on her. 

Last week was Elizabeths long awaited heart appointment with her Cardiologist.  After her Echo and EKG, doctor D., came in to speak with us and told us that Elizabeths heart was just about to the point to go in and do a heart cath to check presures and decide what to do.  He thought we were safe to go another six months but to monitor her carefully and if we think she is getting any worse we will schedule it right away.

So now is the hard part.  Watching her for signs of tiring more easily, sleeping more, becoming winded at things she used to not get winded doing.  Also keeping a closer eye on her O2 levels.  She wears a machine at night called a Pulse-Oxometer.  It tells me at all times her heart rate and O2 level.

Most healthy people stay at 100 all the time.  She lives daily with her O2 levels around 94-96 when awake and around 97 while laying still and sleeping.

So we now have an appointment to go back in six months, get her normal EKG and Echo-Cardiogram done and then after seeing those results, most likely get a heart cath done.

At that time they will discuss either going in and stinting open the homograph.  They did this last time and it bought us six more months before having to have the surgery.  Or to just go ahead and do the surgery.  So next year might be the year she will need the dreaded open heart surgery done. This is the part of having children with special needs that is hardest.

These are the things I can not think about with my children.  The things I can not allow myself to fixate on and let consume me.  I have in the past and it can be just to overwhelming.  If you think on all the future "ifs" it can make you nervous all the time and physically sick.  I have learned that I have no control over any of it anyways.  That these children have been loaned to me by God to raise and for that I am grateful.  That God loves them even more than I do and will take care of them.  That He is faithful and knows what is best and even has a plan for each of them, for their lives.  This is why I just give it all to God and live one day at a time with them all and enjoy them all.  It is why I am over protective of them and stingy with them.  I don't let them go many places without me there.  I home school them because I don't want to miss a moment of their lives.  God is so good.  We truly do live such a blessed and happy life.

Jeremiah 29:11-13  For I know the thoughts that I think toward you, saith the Lord, thoughts of peace, and not of evil, to give you an expected end.  Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you.  And ye shall seek me, and find me, when ye shall search for me with all your heart.

May the Lord God in heaven hold each of us in the palm of His mighty hand.  Leading and guiding us in all His ways every day.

blessings,
susan