Thursday, April 16, 2009

Cath Results

Well, the day is over and I'm back at the RMH for a good night's sleep. Tom's staying with Harlie in the PACU (post-anesthesia care unit). Overall, we had a "great" day. I'm sure Harlie wouldn't agree. But, with everything we did today, we think it went very smoothly.

I was so impressed with the lab tech that drew Harlie's blood. She got in on the first stick and was able to get all the blood she needed! I couldn't believe it. At first, she (the lab tech) seemed pretty tired and bored. I'm sure it is no fun sticking kids all day. But she really perked up after I told her how impressed I was. I told her that it always takes several people with a lot of fighting and sticking and I was so very thankful that she did it so quickly (less than 10 minutes!) and with only one stick. She was great and I really wanted her to know that. What a difference she made for Harlie, and for us.

Anyway, she had a busy day and I'll go into more detail later. It is late and I want to be back at the hospital early tomorrow so I need to be brief.

The cath went well, overall. They were able to get access through her neck (UGH!). Located conveniently behind her trach ties (please note the sarcasm). Soon they will have to go through her liver (and I'm not joking). This was her 5th heart cath and it has taken its toll on her veins. And yes, in case you're wondering, she will definitely have more caths in the future.

The cath did answer their questions about her subaortic stenosis. There is tissue that has grown around the opening, causing an obstruction. It will need to be cut out during her surgery. He said that it could grow back and require surgery again in the future. Great. But we'll get more info from the surgeon when we talk to him tomorrow.

Unfortunately, the obstruction has caused a negative chain reaction through her heart and lungs = high pressure. If you think of your circulation as plumbing - it might help you visualize what that means. Since her ventricles have to work harder to pump the blood past the obstruction, they don't adequately relax between pumps. When the ventricles are relaxed, that's when the new blood coming from the lungs fills them to be pumped the next time. Since they can't fully relax, they aren't able to fully fill, causing a back up. Plus, since your heart is a muscle the more it works, the harder it gets, which is bad.

I can't remember exactly what he said, but... something about if the pressures are 15 or less, that's good and the Fontan can be done. If the pressures are 21 or higher, then that's bad and they can't do the Fontan. Her pressures are 19!!!

Although they are closer to the too high number, he said we really have no other option but to go ahead with the Fontan. He believes that by removing the obstruction (subaortic stenosis) that the pressures will decrease and her heart won't have to work so hard in the future. He said the only other option would be to remove the obstruction (open heart surgery) and wait a year, then see if the pressures have decreased, and if so, then do the Fontan. But that would mean adding another open heart surgery and why do that if they can do it at the same time. The only real negative (I think) is that her recovery from the Fontan could be harder on her as her heart and lungs adjust to all the changes.

Well, that's enough for tonight. Tomorrow she'll get a chest x-ray, another EKG and we'll meet with Dr. Jonas, her surgeon. Then we get to come home for the weekend.

Take care,


Kim said...

You must be exhausted - what a day. I'm glad they were able to get in and see what's really going on, and to come up with a good strategy to best help her. I'm sorry that it's so borderline - I can imagine that's further torment to add to the high levels of anxiety.

Hang in there, and know I'm thinking and praying for you guys.

Heather said...

what a day Christy. I'm glad you got some answers and a plan of action. hopefully today will bring more of the same. we can't wait until your home and can relax for a few days. sending tons of prayers and thoughts your way. love you all.

Lindsay said...

So glad you are getting some information and that the staff there is so helpful and cooperative. Looking forward to seeing you guys this weekend - drive safely!

Susan said...

From what I've read about Harlie it seems that she is amazingly resilient and tough. My hope is that she will impress us again with her ability to recover from having both done at the same time. If I were in your shoes I'd make the same choice. Hugs. I'm thinking about you guys.

Michele Andolina said...

I hope you guys are able to get some rest after such an eventful time. Speaking as a lab tech who used to draw blood on kids, it really means a lot when a parent is so appreciative. I'm sure you made her day!

Anonymous said...

Hey Guys, Just checking in to see how you are doing. And wanted to let you know that we are thinking about all of you, especially Harlie!

Love, Kristie, Dave, Nate, Tayne and Luna

Tracy said...

My, that's a lot of info to have to digest. I pray that the Fontan helps relieve the pressures in Harlie's heart.
Hope you guys can get some rest ( as much as humanly possible in a hospital.)

Rene said...

UGH! I know all about those darn pressures! Please ask her doctors if it would be an option to do the Fontan, and if she doesn't respond well to have it taken down. We had that option with Tommy's Glenn. (that he ended up NOT having because his pressures were 21 when they opened him)

I'm praying you have a restful weekend and I will be thinking of you.