Wednesday, April 6th, 2016

I'm sorry it has been so long since I have updated Kylie's blog.  I want to thank everyone for all of your prayers.  They have given us the stamina to continue on this journey that God has chosen for us.  Some days are exhausting, but that smile and quirky personality is what keeps us going.  She warms our hearts and makes us laugh at the same time.  

In one week we start the next phase of our journey.  We are so ready for our little girl to have a healthy heart.  Her oxygen levels continue to make us nervous.  This week at Schreiber Rehab they 

dropped very low for a period, and therapy changed courses.  Again this morning her fingers were very blue and then a couple minutes later the color was back.  We are thankful in one week we will be at one of the best hospitals for Kylie's care.  Kylie, Mom Kauffman, and myself will drive to Boston on Wednesday and will start the testing on Thursday and Friday.  They continue to tell us she is a very good candidate but until the tests results are in the surgery is not 100 percent.  She does however have a surgery date for the following Wednesday April 20th if all goes well.  The surgery is a double ventricle repair.  There are a lot of variables that could change the course of what she has done.  We decided to not come home between the tests and the surgery because with travel days we would have only been home for Sunday and then turn around Monday to be back up for Tuesday morning for pre op appointments.  Monday also happens to be the Boston Marathon so I'm sure traffic and getting around would have been difficult.  Lee will travel up on Saturday and mom will head back home.

The first two pictures are from our first trip to Boston in January for all of our consults.  We took the train and we all enjoyed the experience.  It was a whirlwind two days and we did laugh questioning the necessity of the trip but knew it had to be made to move onto the next step.  Then in February we drove right after a snow/ice storm.  We really thought we would drive out of it in an hour or two by watching the weather on our phones.  This was not the case and in about 10 hours we arrived in Boston.  We were so thankful for safe travels as we passed many fender benders and had a lot of traffic.  Kylie had all her pre op appointments and the next day she had extensive dental work done under anesthesia.  The heart surgery could not take place till any potential infection in her body is taken care of.  She was required to stay overnight to see how her heart handled the surgery and anesthesia.  Everything went great and we were out the door and on the way home by 10am the next morning.  The nurse said she has never discharged anyone that early.  We had a mission to make the trip in under 10 hours!  In record time a little over 6 hours we pulled in our drive.  After traveling through Boston and New York City, the only traffic we sat in was on route 30 in Paradise.  This really made us laugh.

Prayer Requests:

• Kylie does not get sick before and after we leave
• double ventricle repair can be performed 
• Kylie will not need the surgery done in two visits, or need a pace maker
• (these two things were mentioned as possibilities at our pediatric cardiology appointment this week, the doctor does not think this will be the case, but had to warn us)
• safe travels for each of us
• safety for Shira, Cody, and Kate at home
• a peace for each of us that only our Lord can give us

If anyone would like to send a card you can send it to:

The Yawkey Family Inn

Kylie Kauffman

241 Kent Street

Brookline, MA  02446

I'm taking poster board up to hang on her hospital wall with her name on it.  She will be in the hospital 7-10 days after the surgery on the 20th if she has the double ventricle repair.  It would be great if you could send a picture of you or your family so Kylie knows who sent the card.  I will then attach the picture and note you send to the poster board.  It will be fun for the Kylie, nurses and doctors so see everyone from back home who is pulling and praying for her.  

I will keep the blog updated while we are in Boston so you can see how she is doing and know how to pray.  THANKS so much to each of you for your love and support!  We could not do it without you!