Tuesday, May 31, 2011

Meeting with the Surgeon and Telling the Kids

Today Pat and I went down to Milwaukee to meet with Abby's surgeon - Dr. Woods and it couldn't have gone better!  Every time we talk with someone at Children's Hospital we are amazed and today was no exception.  It truly takes a special person to work in a children's hospital - I think they need to use the slogan "parents first, doctors and nurses second" because that is truly how they act.  They give you all the time you need to answer questions, ease your concerns and just reassure you.

We went armed with literally a 2 page list of questions and when he got done talking to us, he had addressed every question on that list except for the one about whether or not she could wear her own pjs.  And the answer to that question is yes, she can!  Of course she can, they've literally thought of everything! 

He explained the procedure in detail, talked to us about what possible issues they could run into and how they would deal with them and most impressively he allowed us to be involved in deciding what type of incision he would make, he explained the advantages and disadvantages to each and offered what he would do if she were his child, without us even asking. 

We left there feeling really good about everything, knowing that she is in the best care with the most incredible people!  I don't think people realize how lucky we are to have a hospital like that only 2 hours away from us.

After we got home from Logan's soccer game tonight we told both of the kids what was going on.  We told Logan first, explained to him in terms he could understand that Abby has a hole in her heart and they need to fix it so she can continue to grow big and strong.  We told him where he would be during all of this and that he would be able to come and visit his sister.  I have been worrying so much about how he would react and he took it really well, had a few questions but overall seemed to be ok with everything.  Abby, being only 4, doesn't really understand, we just said she has an owie that needs to be fixed and that we're going to a special hospital for just kids and that Mom and Dad will be with her the whole time.  We told her that they need to fix it so that she can keeping dancing, swimming and doing gymnastics and if they didn't do it she would get really tired and not be able to do those things.  She said "and so I can chase Sandy (our neighbors dog, who she dearly loves).  We said they will give her some medicine to make her sleepy so they can fix the owie, she wasn't real thrilled about that and said she doesn't like medicine, but when we told her she could bring Kitty with and that she would be getting lots of presents, the medicine thing didn't seem so bad.  Overall, it went incredibly well, I should have known I was worrying waaaaaaaaayyyyyyy too much about it.

Obviously, we'd prefer not to have to see her go thru this, but we feel some relief after talking to the doctor, he said that if you're going to have a heart defect this is the one to have.  He said they only do about 3 of these procedures a year that are just closures.  But, they do 300+ per year that are closures combined with other issues, so I guess we have to look at it that we're pretty lucky - it could be a whole lot worse!

Hopefully our calmness and positive attitudes towards this remain with us thru Friday!  Good thoughts and prayers, however, are still welcome!

Tuesday, May 24, 2011

My Little Princess!

Since Abby was 8 weeks old, we've known that she had a heart issue.  She was diagnosed with an ASD (Atrial Septal Defect) which is basically a hole in her heart and she also had Pulmonic Stynosis which is a narrow valve.  The Pulmonic Stynosis is now gone as her valve has grown with her.  Every baby is born with a hole in their heart, but usually it closes on its own, hers has not.  We were told that if it didn't close by age 3, in all likelihood it would need to be closed for her.

It definately has not slowed her down, she has absolutely no symptoms whatsoever!  We were told by our cardiologist a year or so ago that once the hole was closed we would be amazed at how much more energy she has.  Well, anyone that knows Abby knows there is no lack of energy or spunk in that girl.  And, for those that don't know her well, think Tazmanian Devil - a sweet one, but that's about the energy level she has.

We are so lucky to have a wonderful Pediatric Cardiologist right here in Green Bay by the name of Dr. Cousineau.  Abby seems him on a yearly basis and they perform an echocardiogram each year - she thinks they want to see what she had for breakfast!  At her 3 year visit, it had not closed and he sent all her test results to Children's Hospital in Milwaukee and they got back to him indicating that she would be a candidate for a non-surgical repair but they wanted her to gain some weight.

At her 4 year visit, they performed the echo in addition to an x-ray and EKG and sent them back down to Children's Hospital.  Unfortunately, they now feel that it cannot be closed non-surgically because there is not enough wall to attach the device to and because the right side of her heart is slightly enlarged.

After the initial shock I talked to a friend who is a Pedicatric Intensive Care Doctor and he explained that this surgery is more common than you'd know and that she would be just fine!  Once we had accepted the surgery all the parental concerns came about - would she be scared?  Could we stay with her?  Would she be in pain?  What would her recovery be like?  I have to say that every concern we had, Children's Hospital had an answer to - it's almost like that hospital was designed by Moms!  Our wondeful family and friends also put us in touch with some other people whose children had gone thru heart surgery for much more severe issues.   The common theme seemed to be that we would be in the best place with the best doctors and have the best care.  Everyone raved about hospital and the care that their children received.  I heard over and over again that they do not allow your child to be in pain - something we desperately needed to hear.

So, here we are..................we have a consultation with the surgeon next Tuesday, May 31 at 10.  Next Thursday at 10am, she has some preoperative testing  and at 7:30 on Friday morning she will have surgery.  The surgery is expected to last approximately 4 hours, only 45 minutes of it will actually be repairing the hole and they assign 1 nurse to every 2 families and all she does is watches the surgery's on a monitor and comes out and updates you each step of the way. 

They said our stay will be 3-5 nights and we can stay with her the whole time so with any luck we will be home early the following week.

We're still trying to figure out what, how and when to tell the kids what is going on but we've decided that we are going to have a really fun Memorial Day weekend and we'll deal with it all on Tuesday.
Logan will be staying with his grandparents and will be very busy while we're gone - hopefully he won't be too upset - as much as those two can fight, he's very protective of his little sister and has never really been away from her.

Please keep them both in your thoughts and prayers and we will add updates as we have something to update.

Feel free to post comments on here with little notes to Abby, she'll love it!

With Love,

The Kawulas; Pat, Lisa, Logan and Abby