Friday, August 16, 2013

with every up there comes a down

Our kids came home today so this morning was my last day to sleep in.  I slowly got ready, taking my time trying to relax.  The plan was to meet my best friend for coffee then head up to the hospital.  I stopped to get gas on my way into town.  As I got back into the car I had a missed call.  801-662... not again..
I called the nurse and she informed me that Capri went into SVT last night and was still continuing to throw up every feeding.  They were taking her down to radiology to put a tube down her nose and into her intestines.  The hope is if they bypass the stomach she will not throw up as much.  She also told me that her last echo showed that her heart had enlarged quite a bit.  It was back to her original size of when she was born.  I hung up the phone, let Mike know what was going on, called Chelsy to cancel coffee and rushed to the hospital.  I am trying so hard to hold back the tears but there is no end in sight. I feel like we are never going to get to leave the hospital and she is never going to get better.  I started to have an anxiety attack and had to pull over.  After a few minutes I felt better and finished my drive to the hospital.  
When I got there Mike was sitting in her room holding her.  The nurse was explaining to him that this wasn't really a set back its just a different outcome.  Instead of bringing her home with just an oxygen tank we will also bring her home with an nj tube.  As she gets older and gains weight they will put a Gtube into her stomach with a cathader into her intestines.  She will most likely have to eat out of a tube until she has her next heart surgery.  I asked the nurse about the new heart medication she is on, she laughed and said it is actually Viagra.  When viagra was first developed it was a heart medication that helped to open up the valves which makes it easier for the blood to flow through.  In the trial however the males that were taking it were more happy with the side effects then what the drug was intended to do :)  When Capri finally does get to go home she will have a whole stack of pills to come with.  She will be on 3 different medications for her heart, 1 for her liver, 1 diuretic, a calorie supplement and possibly a potassium supplement.  So many medications for someone so small.  
Our potential go home date has been pushed back again for at least another month.  She is going to get home just in time for me to have to go back to work.  We were planning on saving all of this money on gas while I was home for 12 weeks to try and pay off my car.  Instead we are spending 4 times as much.  
My munchkins are home tonight and I am happy.  After a long exhausting day I am snuggling with my other 2 children so grateful that they are home safe and healthy.  With every set back there is a silver lining.  I am just going to look at the positive and try to ignore the negative.