Cardiology Follow Up.

So we did NOT get discharged today.

:-(

Really it could be so much worse so it's totally okay. Really it is.

I did a little video so I will just do a quick recap and you can watch the video.

The kids were ANGELS on the way. Makily was giggly and sweet as pie and J ate his bottle and pointed at the window while grunting "uh".

Typically you have to pay to park but we have the trusty handicapped placard so the parking attendant waves us by. The handicapped parking is through the parking garage in an open lot. You literally just have to drive straight through but there is an "arm" that lifts when before you get in. We backed up and pulled up to it three times and the stupid arm would not go up. The parking attendant did not come over to help and we didn't have time to go and fight with him so we just gave up. We park on the second floor then lug the kids up and down the stairs. What the heck would a person with a big wheelchair have done? I don't know.

Annoying!

Makily stood on the scale like a big girl to get her height. I WAS SO PROUD I ALMOST CRIED. They didn't weigh her because her balance is not so great and she needs to hold on. I was just proud that she stood up long enough to get her height and didn't have a cow about it. She's my big girl!

They did her blood pressure, EKG, an ECHO and we came home with a 24 hour holtor monitor.

So fun.

Makily was really good for everything except the blood pressure. She's tough to get and they use the electric blood pressure cuff so it just about squeezed her arm off. When her arm turned a nice shade of purple I said "uhm is this done yet"? She CRIED and was VERY ticked off. I don't blame her. They finally got it on her leg.

I told the doctor about the weird petechia Makily had been getting and how we stopped the aspirin and they went away. She said she would not have expected such a low dose of aspirin to have caused that. It's Makily we are talking about here though so nothing surprises me when it comes to her.

EKG was fine and so was her blood pressure.

Echo is still showing Mitral Valve Regurgitation.

I asked what caused this since it was never noted before the heart cath and ASD repairs

She explained that Makily had so many holes that in order to plug them all they had to use a larger device than they typically would use on a baby her size. When they do that sometimes the "device" (in Makily's case an Amplatzer Occluder) can "distort" the other valve's in the heart and/or put more pressure on another valve. The doctor said she feels part of this is actually congenital which to me didn't make sense. The regurg was never noted until AFTER the ASD repair. Her explanation is that the edges of Makily's Mitral Valve are "floppy". She feels like they likely always were BUT it is noticeable now because of the extra pressure on the valve from the large device in there.

I hope that made sense.

The good news is that there is NO RESIDUAL LEAK at the site of the device. Sometimes there will be a small leak here or there but NONE at all was seen.

Due to the regurg we have to continue seeing cardiology once a year. The doctor just wants to make sure it does not get any worse. At this point it is mild so it's nothing to be too concerned about. I didn't even ask what we would need to do if it became worse because I was afraid she may tell me. :-?

They put a holtor monitor on her just to make sure her heart rhythm is okay (which I think it is) and as long as that is okay she will be sending over clearance to ENT for Makily's ear tubes and ABR on the 23rd. (that was a long sentence)

I'll admit, I had a "moment" today.

One of those moments that THANKFULLY have become few and far between instead of a daily and almost hourly occurrence that used to plague me.

As I laid next to Makily while the tech did her ECHO I again was hit with

"wow I have a child that was born with a heart condition and..............................."

It's a sobering reminder of all the things she and we as her family have been through in the past nearly five years. I am so much better about NOT dwelling on all the sad, horrible things from the past.

It's in situations where I look at Makily laying on a table, EKG leads stuck to her porcelain white skin, a feeding tube protruding from her little tummy that's been scarred by surgeries and a doppler wand taking picture of her heart well it's hard NOT to think about and remember all that she's been through...and worry about all she WILL go through. It's times like this though that I find myself thinking of all the hard times she has already experienced.

The sadness and despair of it all fill my heart and I just want to cry for her.......and for us.

I am so grateful to have that difficult part of her life behind us now. It was such a sad and incredibly dark time. We all were tested in ways we never imagined. I am proud to say that my entire family and my close friends all came through it stronger and better but most of all we are closer.

I love you forever Makily, through it all no matter what, I love you my baby girl.

**note: for some reason I can't get the dang video to embed here. Click on the link below and it will play for you. If anyone has any idea why I can't get a onetruemedia video to embed LET ME KNOW, it's driving me crazy!**

Makily Cardiology 1-5-09