Long Ride, Happy Life

You wouldn’t think writing a blog could be so hard to do.  I guess it’s the subject that makes it so hard to start typing. 

Well last February, Justice had open heart surgery.  The original plan was to repair her pulmonary valve.  However, they ended up finding a large amount of scar tissue under her valve and an Atrial Septal Defect (ASD).  They repaired both of these problems and were able to leave her pulmonary valve intact for now. 

After about a week in the hospital she went home off of oxygen and everything was looking very good.  Then one evening, about 5 days later, she started to complain of pain in her shoulder and back.  She was playing a board game so we didn’t think much about it at the time.  At about 3 a.m. she woke up my husband and again was saying her shoulder and back was hurting and he noticed at that time she was starting to have trouble breathing.  He thought about taking her to the ER but she went back to sleep so we decided to wait until morning and see how she felt.

By 7 a.m. she clearly needed medical attention.  I called the doctor and asked if we should take her to the ER here in our town or take her to her normal hospital about an hour drive away.  He recommended we go to the ER here.  After about 6 hours in the ER they transferred her to her normal hospital where she would have access to her whole team of doctors.

It was discovered Justice had developed fluid on her heart.  She was put on a large dose of many meds and was put on a schedule to have Echo’s done daily.  After about a week however, the fluid was not better and had actually spread to her lung.  She was then taken back into surgery where they drained the fluid off both her heart and lung. 

This I have to say was an emotional nightmare!  I overheard staff talking about how amazing it was that it took over 10 tries to restart Justice’s heart after they took her off bypass.  When I asked her Cardiothoracic Surgeon about what is “normal” he said it can happen that a person needs help getting their heart to restart but most of the time it doesn’t need help at all.  And yes, Justice did need a lot of extra attention but it shouldn’t affect anything from this point on.  This was a comfort to hear but I wish I never would have heard the details to begin with. 

As for the second round of surgeries, we kind of got a Cardiologist that was very excited about getting to go into the OR.  He didn’t seem to understand that this was my child and not just a patient of mine.  At one point, (and the first time ever) I almost passed out!  The way he described inserting a needle into my baby’s already sewn up chest and needing to be very careful to poke it into the sack of fluid but not jab it into her actual heart or let the her heart beat back against the needle made all the blood run out of my head.  Luckily for me, some of our other Cardiologists, who have worked with me for years, were there and provided me support.  Plus, our Cardiothoracic Surgeon also could tell that when I said “I need to sit down.” that didn’t mean “I’m just tired of standing here.”  When the Cardiologist went to get a consent to treat form, the CT Surgeon gave me some wonderful words of comfort and assured me that Justice was safe and would be under his watch at all times.  Nothing will go wrong but if for some reason it did, he would know how to fix it and WILL step in. 

She ended up fine.  It’s been a long recovery and we still have things to watch and take care of but she’s getting there. 

She ended up bonding pretty tightly with her CT surgeon and even convinced him not to clear her for any other surgeries until the summer was over. 

We are now planning to have the spinal rods surgery (that was supposed to happen 2 years ago) this fall.  Plus, at some point in her future she will need to have her pulmonary valve replaced.  Because of this, she will probably need multiple heart surgeries throughout her life but for now, we are taking every day with her as a gift.  We are so blessed to have such a strong, loving person in our world and so many people that work so hard to give her such a high quality of life.

We are doing more things to make memories, like this summer we went on vacation to the Smokey Mountains and stopped by Kenny Chesney’s home town because she has been such a huge fan of his her whole life. 

Isn’t that what we should be doing? We have enough stress.  Taking very chance we get to celebrate the momentous (like her heart started again) or the smaller joys (like one of her favorite entertainers) in life.