Open Heart delayed....pictures from Gotcha Day January 2012

Today was supposed to be Amie's open heart surgery....the day did not go as planned....

Last night Amie and I had a real deep conversation about her fears and what was going to happen today.  She cried and said she didn't want to die (something she's been saying for the past few weeks).  She refused to say her bedtime prayers, but said she'd say prayers in the morning.  I don't know if it was because she was mad at me, or if she was just mad in general.

She wound up crying herself to sleep last night telling me she didn't like Dr.'s, she didn't like "Dr. Tuna" and she wasn't going to take her jammie top off (that was the real challenge and the final straw when she had her heart cath in January).

So this morning at 4am, the alarm goes off.  I finished taking care of a few things and we woke Amie up around 4:40.  We were in the truck and half way to Peoria when a call came on our phone at about 5:20 saying that Dr. Fortuna had been up all night in an emergency surgery and needed to cancel Amie's surgery because he hadn't gotten any sleep.  We appreciate deeply that he was not cavalier or macho and said, "I can do this"!

As I hung up the phone and was telling Darwin that we needed to turn around and head home Amie began crying and begging us to keep going cause "I need my heart fixed".  Broke my heart in two!  

By the time we got back to Galesburg, she seemed to be taking things better.  We had breakfast with Grandma and Grandma and Aunt Sis and Uncle Wayne (who were in town).  Then we let her decide if she wanted to go to school or spend the day with Dad.  She wanted to go to school.

This afternoon we got a call to say they have her rescheduled for next Thursday (May 3rd).  So - now our timeline is a bit different, but as we always say - things happen for a reason.  

I didn't want to post without some pictures & since I am months behind on the blog - I decided to see what pictures might be nice to have on here.  I came across Amie's Gotcha Cake pictures.  Gotcha Day is the day we adopted her & so of course she got to have a special little cake for the occasion.  Of course - she LOVES to put her face in her cakes!

So there you have it - Miss Sunshine who couldn't be happier with a little frosting on the nose!

Will post again after surgery next week (or who knows - my class should be done by this weekend, maybe I'll actually get some of the old posts caught up before then!)

Pre-op

This morning, Miss Amie took a dress shirt out of her closet and said she needed to dress up today for a program at school.  I panicked a little and logged onto the school website and didn't see anything about a program, but I let her dress up anyway.  She thought she was pretty spiffy looking & I have to agree!  :)

Today was her pre-op day, so we had to head to Peoria.  We met with the child life specialist who brought her a cute stuffed dog named "Josh".  Josh came with a book that explained that Josh had surgery too & "He is OK".  It's a sweet puppy and a great book.

The rest of the time was spent waiting....waiting....waiting & getting her pre-op testing done.

 She has now been told a little bit about what is going to happen next week & got to tour the hospital where she will be staying.  I was the one that was excited to hear that there was no chance she would be put in the "ward room" like she was after the cath in January!  So - the count down has begun.  Now if I can just get everything done before then!

Open Heart it is...

The news we've been expecting and dreading has occurred.  Amie will have open heart this month to repair or replace her troublesome aortic valve.  We had her appointment with the surgeon on Monday & he gave us information we hadn't had in relation to why they don't want her participating in PE or running at all for now.  I had not been informed before, but I guess she is at increase risk for sudden cardiac death with her heart working the way it is right now.  He said the risk is only slightly increased, but that was pretty much all we had to hear.

So from now until after surgery, she is restricted to no heavy running, jumping or playing.  We need to keep her heart beating at a normal pace as much as possible.  After surgery she will have to be in the hospital about a week and then nothing strenuous (including swinging on her swing) for 6 weeks.

The plan is to attempt to just cut apart her abnormal leaflets, if successful, will give her the longest time with this valve.  The chances of it being successful are pretty slim.

The likely surgery will be a procedure called the ross procedure.  Here is a link to the specifics of it:

http://www.cts.usc.edu/rossprocedure.html

In essence, the abnormal aortic valve will be removed and discarded and the healthy pulmonary valve will be moved from the pulmonary (right side) of the heart into the aortic (left side) of the heart.  Then a tissue vavle (either cadaver or animal) valve will be grafted into the pulmonary valve area.  The upside to this procedure is the aortic valve is under more stress and strain than the pulmonary valve.  So by using her own valve she may make it a long time without having to have this valve replaced, and it might make it 10-20 years or even longer without surgery to the aortic valve.  Unfortunately, the tissue valve that will replace the pulmonary valve has an expected life of probably no more than 10 years.  But the other upside to this is that surgeons believe that within 8-10 years they will be able to do surgery on right sided valves through a cath procedure instead of as another open heart.

No matter how you look at it - once she hit the need for this open heart because of the bad valve, she will now have at least one more open heart in her future, and possibly several.  It hurts me to think about it, but I know it is the only way to keep her alive and have a semi-normal life.

I do not intend to open a caring bridge account, I will attempt to post her surgical updates on here.  Her surgery date is Wednesday April 25th.