Tuesday, July 16, 2013

praying for good luck

I haven't written in here in a few days.  Every night I sit at my computer and contemplate what to write. I am so drained physically and emotionally i haven't been able to put my feelings into words.

This morning Capri was taken completely off her prostaglandin medication.  This medicine is what has been keeping her valve open which is what is pushing blood through her system and keeping her alive. Once off this medication her valve will close and we will see if she can distribute blood on her own.  In a perfect world her heart will be able to push that blood where it needs to go and we will be able to take her home in the next few weeks.  If she cant do it on her own all of her SATS will drop and they will have to quickly put her back on the medication.  There is a very small chance that the valve will not re open and at that point she would be rushed into emergency surgery and things would not look great for her.   Most likely though the valve will re open and then we will try other surgeries.  Ideally they want her to make it to 6 months before surgery.  At that point her valves are more formed and they have a much higher success rate.  Doing surgery on the valve now is like stitching together tissue paper.

Today is the first day that i have felt like there is hope.  The last 6 days I have been preparing myself for her death and knowing that these moments in the hospital are the only moments we are going to get with her.  We still have such a long way to go but there is a light at the end of the tunnel.  Todays visit with the cardiologist was the first time they gave us a glimpse into the future.  Every other doctor has just told us to take it one day at a time.  He also told us there are 4 different stages of ebsteins anomaly.  Right now she is classified as level 3.  Again, hope.  She is not worse case scenario like we thought.

Last night i fell asleep around 10 and woke up at 11 freezing.  My body felt like it was the middle of february and i was sleeping in the snow.  i had the covers up to my neck but nothing was working.  From my neck up was burning hot.  Ive never had such extreme differences at the same time.  Mike had a cold rag on my head while rubbing the rest of my body to heat it up. I had a 102 temp.  I was miserable.  I woke up every 30 minutes for the rest of the night.  this morning I went to my doctor and found out i had mastitis.  Because i had a fever above 100.5 i couldn't go to the NICU today.  Capris big day of getting off her meds and I cant be there.  I sat in the waiting room for 6 hours while Mike and my mom sent me pictures and videos and texted me updates.   I sure hope all this bad luck is because my good karma is all being saved up to bring Capri home to us.

We came home tonight and one of my wonderful neighbors brought my family dinner.  One of the same neighbors who cleaned my entire home before we came home on Saturday.  Another neighbor brought me milk so my kids could have cereal in the morning.   I am so blessed to have such amazing people in my life.  I couldn't have asked for a better block to live on.

My life is still a whirlwind with no end in sight.   I still am not ready to answer phone calls but have started texting people back.  This has been so difficult for us yet it has brought our family so close together.  Realizing that you never know when tomorrow could be the last day you are alive makes you change the way you look at things.  Ive heard that my whole life "live like everyday is your last"  But it doesn't have the same impact until it is really happening in your own home.