Counting Our Blessings

Counting Our Blessings

Tuesday, January 29, 2013

Unexpected Trip To UCLA

On Monday Noah was telling me about every ten minutes or so that his head and heart were hurting.  He has lots of different chest pain episodes that he experiences on a daily basis but the head hurting was a new symptom.  He gets these shooting pains to his head for a few seconds and then they go away.  It is not a headache and he will get them often and they go away after about 30 seconds.  I decided to call UCLA to let them know.  They like us to keep them informed of any new symptoms.  They asked us to come in first thing in the morning.  Our appointment was at 9 a.m. so that meant we had to wake up super early.  If you know me well then you know I'm not an early bird :)  We met with the whole transplant team including the dentist. Ha! Did you know a dentist was part of the team? Well neither did I.  Pretty cool since I had a few questions for the dentist.  We saw the nutritionist, transplant coordinator, social worker, and doctors.  Noah had an EKG, echo, labs, and they put a 24 hour holter heart monitor on him that will record all his heart activity. It was an extremely long day.  The most exciting part of the visit was when the Transplant coordinator told us that she had seen Noah's name come up on the list several times.  WHOAH!!! That kind of took our breath away.  What does this mean?  Well when a heart becomes available in our region UNOS will call UCLA and give them a list of names.  They are to call the first one first and if they can't except the heart they go down the list.  You know that it is getting close if your name has come up on the list.  This was very exciting to us yet frightening all at the same time.  It just makes it that more real.  We learned that they get calls for hearts often but that UCLA is very picky about the hearts they accept.  They want the absolute best for there patients.  We love that about them and it is why they are one of the top in the nation.  We will keep you all updated on what the doctors find with Noah's test results.  Our prayer is that he would remain healthy and strong.  He had such an amazing attitude today and was telling riddles to the doctors and nurses.  Reminded me of the Wicked event when he was amuzing all the ladies with his jokes and humor.  He is so strong and knows God's got this.

1 comment:

  1. I don't really know how I came across your blog, but I can't stop reading. :) Many prayers for Noah as he waits for his new heart! My Owen, just turned 5, and was born with HLHS.. also waiting for his heart. He was listed just one month before Noah at Stanford (while we wait in AZ), which is probably how I found your blog through Mary Sammons (we are sort of neighbors, but have never met in person). Just wanted to say hello and that Noah is in our thoughts and prayers. As well as Hannah as she gets ready for her Fontan. Andrea