Elizabeths Heart Cath

Today's post is a bit medical, so if you are sensitive to such things, you might want to skip it.  :)

Elizabeth and her life are a miracle on so many levels.  She was born with Truncus Arteriosis.  That basically means a three chamber heart, with one trunk of an artery coming off of the third chamber, that splits later .  She was and continues to be, our child that is the most medically fragile.   You can read about her story here.

We were told that if she was born several years earlier, there was no way to fix her heart. The surgery that was available at the time of her birth, could fix it but...she would need to have major heart surgery every four or five years for the rest of her life.  I mean..cool her body temp down... open her chest, break all her ribs, put her on a heart machine, stop her heart, fix it and put her all back together surgery.  Very serious and scary surgery for us all.  When she was born, they put in a wall to divide the bottom single chamber and used a cadaver artery, to make a conduit from the new chamber to the proper artery.  We all have valves to prevent back washing, she does not in that portion of her heart,  so her heart sounds like a washing machine and she fatigues easily.

The surgery was preformed the day she was born, to save her life.  It held till she was four and then she started having very high heart pressures and constricting of the non-living tissue, the conduit.  She was on oxygen and lasix daily as she was having congestive heart failure.  We took her in for a heart cath, to try to put in a stint to hold open the collapsing conduit.  It would buy her some time before needing to do major surgery to replace the whole thing.  When they went in to do it, her leg arteries had collapsed so they used groin arteries to gain access.  They could not get the stint into the conduit to place it.  We were so upset and sad and prayed hard.  They were going to do the surgery the next day.  That night a visiting Dr. from another country, came in to us and said that he would love our permission to try to place the stint.  He felt very confident that he could get it placed.  So we gave our consent.  The next day we had everyone we knew praying hard and praise God the stint was placed!  It bought her one more year before she needed the much dreaded major heart surgery. 

It was very hard to see our little girl go thru such a difficult surgery but glory to God she did amazing.  They only let one person at a time back into cardiac ICU and so Tim went back first.  He came out smiling and said everything was going to be fine.  He said he touched her little foot as it was the only thing not hooked up to anything and for the first time in years it was warm and had good color.  She felt so good after the surgery, it was hard to keep her still like they wanted us to, for the recovery peroid.  Also, glory to God, she no longer needed oxygen!

That surgery was supposed to last 3-5 years and praise be to God, she has not needed another since!  She is now 14.  We have to go to the cardiac doctor every six months for a EKG and Echo Cardiogram to check for enlarging and heart pressures and such.  Every six months the doctor would say all looked good and nothing had changed much and we could go another six months.  About four years ago, he warned us that anytime we could come in and things could have drastically changed and we would need to do something, as her last surgery was so long ago.  Praise God, we kept getting the go ahead to see him in six months, until last visit.  It was out of the blue and I was not prepared for it.  It took the Dr. forever to come in to talk to us after the EKG and Echo were completed.  A nurse came in and asked to take her back for a second Echo...  He finally came in and was not his happy jovial self.  He listened and felt pulses all over her body.  I finally could take it no longer and asked what he was thinking and he said that we would not know till she had a heart cath to check the pressures in her heart.  That things were not the same and he suspected she might need to have a stint placed, so a heart cath was scheduled.

Tim took her to Atlanta (to the children's hospital) the day of the heart cath and I stayed home with all the other children.  Elizabeth was nervous as she is older now and understands all that is going on.  I told her that I was staying home and she would be home tomorrow but if anything changed so that she needed surgery, I would find sitters and be there as soon as I could get there.

Tim called regularly and kept me updated.  They took her back and had trouble again getting up to her heart thru her leg arteries, so had to use two places on either side of her groin again.  Her heart pressure was not good, it was 90.  They came out and asked Tim's permission to place a newish kind of stint, that had a valve in it, so she would finally have a valve in that chamber.  They have had very good results with this stint/valve and they last about five years, so Tim said yes.  They were gone a while and came out and said they were having issues with the conduit collapsing, so they would need to place a stint first.  They placed a stint but then the next area collapsed.  Tim called and said they were going to place another stint.  Same thing again.  Over four hours later and much work later, they ended up placing three regular stints plus the extra one with the valve in it.  I finally got a call that it was done and she was in recovery.  With all the work they did her heart pressure was now 30!   Then a short while later I got a call that they could not stop the bleeding from the entry sites.  They have to give blood thinners during the procedure to keep down the risk of clotting and they also did way more work thru the arteries than they first thought they would. I texted everyone I could think of to pray and my in-laws offered to come stay with the children if I needed to go down.  Glory to God after a few hours I got a call all was well and it had finally stopped. 

I give God glory, honor and praise for holding Elizabeth in his mighty hand her whole life.  For having such tender loving care over her and helping all to go so well with this procedure.  That even though she needed a lot done, they were able to do it and she didnt have to have the whole major surgery done.  With all the work done, they say it should last her about five years.  I am just so overjoyed and grateful. 

Her recovery has been good physically.  She is feeling well and healing.  Behaviorally, she is having some of the hardest days we have seen.  She is always terrible after a surgery or procedure and it takes her a while to get herself back under control.  She gets very sassy, violent and says horrible things to us all.  I don't know if it is because of the pressure of knowing the severity of it all?  If the anesthesia does something to her chemically?..  Or maybe she knows my punishments will not be as hard because she is recovering?  Either way, I ask that you rejoice with us in her good recovery and God helping her so much physically...and that you be in prayer for us that her out of control behaviors will settle down and she will have some self control.

Romans 3:20-24

²⁰ Therefore by the deeds of the law there shall no flesh be justified in his sight: for by the law is the knowledge of sin.
²¹ But now the righteousness of God without the law is manifested, being witnessed by the law and the prophets;
²² Even the righteousness of God which is by faith of Jesus Christ unto all and upon all them that believe: for there is no difference:
²³ For all have sinned, and come short of the glory of God;
²⁴ Being justified freely by his grace through the redemption that is in Christ Jesus:

God, as always, has shown us His mercy, grace, power and might, His plan and abounding love.  May He reviel these precious truths to you as well...as you live and grow in Him. 

Blessings,
susan