Saturday, December 19, 2009

Once a heart family, Always a heart family...

Today I have a lot of why's?...

Jordan had her yearly cardio appointment on Thursday. We started the day off with trying to keep Jordan from eating or drinking anything. That in and of itself is an interesting feat...she's 3. She doesn't understand the why. She just knows she's hungry and wants "milk in a cup". We really don't think she will stay still to have the ECHO done so she has to be sedated.
**These were taken with my phone...I forgot my digital camera in the van...

Start of the day...we were waiting PATIENTLY for the meds...

Sedation has been interesting to say the least when it comes to Jordan. Last time, she had 2 doses before she conked out. She fights it until she is just delirious. I have nicked named her "Drunk Jordan" during all of this! This time was no different. She fought sleep for an hour...a LONG hour of counting, of soft music, of rocking, swaying, of laying down...

of playing with her mouth...

...of giving kisses...

We tried just about everything you could think of. FINALLY she started crying and just couldn't get comfortable, which, by her waking up in the middle of the night and trying to get her back to sleep then, I knew she was close. I picked her up, swayed again for a few times and BAM. Out like a light. Jordan was out solid too. GOOD!

Finally Jordan is OUT! Not sure how a towel on the noggin' is suppose to keep her warm but oh well...what's going on in your ticker, Jordan??

While the ECHO was going on, I was looking over the shoulder of the technician. She seemed to be looking at specific spots for longer periods of time, taking lots of pics and really not talking to us. I kept trying to stay calm but something told me that there was something wrong. I had noticed too that a valve looked like it was slapping something when it opened but again thought "well maybe that is 'normal' for her" but I didn't remember it from last time. Jordan's O2 stats were fine so what really could be wrong?

The verdict?? We found out that Jordan's subaortic stenosis has progressed significantly and will need open heart surgery in January to remove the mass right next to her aortic valve. Her gradient was 65 (up from the low 30's last year). What I saw slapping was the aortic valve hitting the mass. It can't be seen on the ECHO whether or not it is actually attached to the aortic or the mitral valve. Dr Scholz wants to do the surgery as soon as possible since her condition worsened as quickly as it did. Right now the walls of her ticker and her aortic valve haven't been damaged by the pressure in her heart. We want it to stay that way. Once the valves get replaced, then she's in for a lifetime of surgeryies to have them replaced as she grows or as they wear out. There may also been the need of a cath for her mitral valve since he noticed some minor narrowing there also. He is going to let Dr Davis (Jordan's surgeon) decide whether or not a cath is needed. Dr Scholz thought maybe that was how it was constructed after her cleft mitral valve was "fixed".

So my why's. Why does Jordan have to go through another open heart surgery when her original diagnosis was on the "minor" side of CHDs? Why does my baby have to go through another surgery which causes her pain? Why were we told in the beginning that her heart should be "fixed" with her 1st surgery? And bigger ones like why didn't I take her in sooner regardless of what anyone said? Why did I somehow know that something like this was going to happen again?

I sometimes hate "mother's instinct". I've had this pit in my stomach for sometime now that something wasn't right. Jeremy and I were talking the night before when he asked me what I thought the doc was going to say. I outright told him I thought her pressures were going to be high, that her stenosis was worsening, and that something was going to have to be done. I couldn't give him any concrete or medical evidence...somehow I just knew. I wish...Oh how I wish I was wrong!!

SO...when Jordan comes out of sedation, it is just about as funny after she sleeps as before. She is happy, CRAZY, and hungry!

No-I'm not foaming at the mouth. I just ate 3 powder donuts and had some apple juice. (Mom and Dad paid for that later!! YUCK!)

See my hands? I have powder on them too!!

We should know more Monday if Jordan's case is presented. As of Wednesday, she was the only one to be presented. It may not be until January though before we know anything due to the holidays. Please keep Jordan in your prayers for a successful surgery and for a quick recovery.

Please also keep these other heart kiddos in your prayers as they will be going through their own surgeries and cath procedures also! **These were taken from another Heart Mom's site but it is amazing how we all tend to follow the same pages!

Logan Jacks has his cath after Christmas and a possible open heart surgery to follow.

Derrick is undergoing his cath on Monday and will have his second open heart surgery soon.

Andrew will have his cath in January and faces the possibility of another open heart surgery.

Please also keep the kids who have are going through recovery from sugery and also have parents who have lost their kiddos to CHDs this year. Unfortunately there are WAY too many angels to mention, but one in particular is Jess Twigg. She is having a rough time just trying to understand and get beyond the hurt of losing her child.

Most of all, please keep the doctors, surgeons, researcher...EVERYONE who could affect and does affect kids with CHDs. These are the people who keep our kids hearts a tickin'...

Until next time,



Jen said...

I am so sorry to hear the news of Jordan needing another surgery. We had the same thoughts too, since Andrew's heart was supposed to be "fixed" the first time, too! It is frustrating, isn't it? Unfortunately that is just the road we are on in this incredibly rewarding but difficult journey. We will certainly be keeping Jordan in our prayers as her surgery approaches.
Thanks for including Andrew on your blog.
Jen, Craig & Andrew

Stefenie said...

I have been thinking a lot about you since we talked on Thursday after Jordan's appointment. I have been wondering if it had "hit" you yet. I know....we all ask the "whys" when we find out there is another surgery. With Logan's condition we know that there is always going o be a surgery and we will never get to hear that he is "fixed". However, I try to let go of the "why" and just be thankful that I still have him here. That is what gets me through those tough times.

Praying for you all!! I am here for you anytime so call me and don't worry....I will be calling you soon!!!

Stef, Ryan, Wyatt and Logan