Monday, April 13, 2009

Not a dull moment...

Where to start? I got a call tonight from Harlie's cardiologist in DC. I could tell immediately that something was amiss.

Basically, they had a conference this afternoon to discuss this week's cases. They went over all the data on Harlie (her last two heart caths - August 2008 and last week's - her last two echos - a few months ago and I don't remember when). In short, the images do not answer their concerns, and they need more info before going in for surgery.

A long time ago - I don't remember when, they discovered that Harlie also has subaortic stenosis. Note: if you check out the link about subaortic stenosis the picture of the heart is definitely NOT Harlie's. Her's is all crazy. Anyway, it's my understanding that they need to know more about the degree and severity of her stenosis before going in for surgery so they can fix it while he's in there, or not, depending on how bad it is. Doing the Fontan as scheduled without fixing the stenosis if it needs it, would be bad. Very bad. So, no argument from me! Do what you gotta do to give Harlie the best results possible.

So, we will leave Wednesday night (instead of Tuesday night) and on Thursday she will have another heart cath (her 5th) (I think they want to try to get access through her subclavian vein since the doctor couldn't for her most recent heart cath) and they will do a transesophageal echocardiogram or TEE for short. Instead of doing the ultrasound on top of her chest, they will do it by putting the instrument down her esophagus so they can see the heart without the bone, etc. in the way.

Hopefully between these two procedures they will have the information they need to make a decision - and fast. The doctor said that she would see if the surgeon would then be willing to do the surgery on Friday or early next week. I suppose there is a possibility that the information could tell them to wait to do the surgery altogether - but I'm thinking that would be worst case (and I'm not going to think about that).

At first when she called, I was afraid that something happened with scheduling, or the surgeon and my heart was in my chest waiting for her to explain what was going on. But to find out that the surgery is being postponed because of a questionable issue with her heart just makes me sick. I am just going to assume that she isn't sugar-coating it by telling me that the images aren't clear. Regardless, they are going to do more studies to get the answer and we'll know on Thursday.

I guess it buys us another day to pack and get everything together, although now I have no idea if we're coming home on Friday or well, when? Eh, details, schmetails. I live life by the seat of my pants. Plans? Who needs plans? I don't need no stinkin' plans!

Have a good night!


Susan said...

"Eh, details, schmetails. I live life by the seat of my pants. Plans? Who needs plans? I don't need no stinkin' plans!" OMG thanks for the good laugh. I love that you still have a sense of humor in the midst of it all. I am confused about why needing an extra test means leaving a day LATER but whatever, more time to pack is good.

Seriously, I'm sorry things are not going your way. Hugs. I'll be hoping to hear they got the info they need and all goes well. Give Harlie a hug for me.

Rene said...

Nothing can ever be as simple as making an appointment and following through, can it? Rob (hubby) had a TEE. He couldn't swallow the probe and had to be knocked out. I hope Harlie has it easier.

I learned a long time ago to always pack for the long haul. Even if all goes well and you're home sooner than you think, it was always the times I didn't pack that we ended up staying longer.

Lots of hugs and praying for good news from the cath.


Anonymous said...

Kristen and I will be thinking of your family this week! The same thing happend to Kristen before her Ross. She has sub-aortic stenosis (primiary diagnosis) and they called two days before surgery telling us they wanted to do a TEE to get a better look before sugery. It went very smoothly and surgery went off as planned. They put her to sleep for the procedure. I hope it goes just a smooothly for Harlie.

Take Care.

Angela, Mom to Kristen, 15, Subaortic Stenosis, OHSX5

Donna said...

Seriously?!? I know you just want to pull the emergency break on this emotional roller coaster. I'm sorry things aren't going as planned. I'll pray that they get the info they need and everything else goes exactly as planned.


Tracy said...

Hoping and praying the doctors get the answers they need so they can do Harley's surgery. There really is never a dull moment. Is there? LOL.