Our Congenital Heart Warrior!

Our Congenital Heart Warrior!
Rockin her Red!

Friday, August 19, 2011

HAPPY BIRTHDAY ADDY!

As many of you know, Addy had her cardiac MRI last Friday. The reasoning behind it was because they were unable to visualize the Left-PA, or vessel that feeds her lungs blood supply. We were hoping it was just because Addy was being an uncooperative patient (imagine that!) but that unfortunately is not the case. Addy's L-PA is only measuring 3mm at this time. Enough for her to get blood supply, but way smaller than it should be. This means that it is not growing as she grows. Unfortunately, this is often a problem area because of the Aorta lying on it can compress growth.

Our team of highly intelligent doctors presented her at cath conference yesterday. Cath conference is the weekly meeting where all of the cardiologists and surgeons get together and discuss (or argue) about what the best plan for complex patients who are looking at surgery. If you ever want to see what your friendly cardiologist REALLY acts like, sit in on one of these meetings! All the sudden there are so many egos in the room that you never would have even suspected from the nicest cardiologists (note I didn't say cardiac surgeons as their egos are usually already apparent).

So that plan that they have come up with is this...normally the last stage of palliation surgeries is done in the range of 2-3 years. They usually have a heart cath done about a month or so before hand to look at pressures and make sure they are ready for surgery. They have decided to move this cath for Addy up to in the next 3-6 months. At the time of the cath their are several things that can happen. The goal is to be able to go in there, take a look around, and hopefully see that the vessel is big enough and they don't have to do anything. If this is the case, Dr Bischell will surgically augment it at the time of the Fontan while he already has her chest open. The second option is that the vessel will need some sort of intervention right then in which case the first option of that would be a balloon dilation. This is commonly done but carries its own risk when you think about stretching something with a balloon sometimes things tear and that would be very bad. The second option that could happen during a cath is that if the vessel is too small to balloon, they could have to place a stent. A stent would physically hold the vessel open in that spot but would also be harder to work around during the Fontan. Dr Bischell would prefer that they not do anything to the vessel until he gets in there. That means there is also a chance that if they get in there they could decide right then to take her on and do the Fontan that day. If they are just able to do the cath and get out, the date for the Fontan would probably be pushed up until she is about 16-18 months. If she were to lose complete blood flow, it would be life threatening, hence why it is so important to do something now.

This is not really news that we wanted to hear the day before Addy's birthday, but unfortunately this is our life. Many people don't understand that having a child with a hypoplastic heart doesn't mean that they can "fix" her in 3 surgeries and she will be fine. The reality is that these kids will continue to need echos, caths, and surgeries throughout their lifetime. Many have to go in for "tune up" type surgeries because, as in Addy's case, sometimes things don't grow with the body like they should. Cardiac children also often have other multi-system dysfunction as well that takes the focus off of just the heart as a problem area. So please, although you may mean well by saying "oh well she only has one more surgery and then she'll be fixed", please don't minimize the true condition by forgetting that she may have a dozen more surgeries in her lifetime, after she is "fixed". Cardiac children endure more in the first few years than most people experience in a lifetime.

OK, now that I have updated everyone on Addy's Heart, I have more important news....TODAY IS ADDY'S FIRST BIRTHDAY!!! This day is so special to us because one year ago today we didn't know if Addy would make it to 1 week or month, much less 1 year! The last year has been a roller coaster of emotions but I wouldn't trade it for anything. Every day I am amazed by the things that Addy is learning to do, and I take no day for granted. A year ago today, I held my baby in my arms for the first time. She already had multiple IV's and was on medication to keep her alive until surgery, but she was mine! People often say "I don't know how you guys do it" Yes, we both work at the place that our child frequently visits, we have 2 other kids, and we are both in NP school full time- call us crazy. But this is our life. I wouldn't change a single part of it. When you're living something instead of seeing it from the outside, it's not an option. We didn't want our baby to have to go through so much pain throughout her life. But we are going to fight for her every step of the way, because this is our child. If it were yours, you would do it too.