Sunday, April 27, 2008

Nissen Surgery Tomorrow!

So, Harlie’s nissen surgery is tomorrow (Monday) (the one that will hopefully stop her vomiting). It is finally here. This is the first step for getting her trach out – so this is a biggie. Everything hinges on the success of this nissen!!! If the nissen is successful, then she has jaw reconstruction the first week of June. Then sometime in the fall, possible decann!!!! Wow!

I know she’s first case on Monday morning, but I don’t know how long the surgery will take. On top of doing the nissen procedure itself, he’s going to replace her current peg tube (feeding tube) with a mic-key button. If all goes well, he will be able to use the same site that her peg is in right now. Less scarring (would be nice) and less hospital time if that works out. If the site is preserved, then she should be in the hospital just one night. If not, then it could mean three nights in the hospital.

He’s going to do it laproscopically and will go in at 5 different places, I think he said. He is very considerate and is going to go in through her chest tube scars (from her heart surgeries) and belly button to try to minimize more scarring. My poor babe and all her many “tattoos” already. Although, I have to say, it looks as though her skin heals great. They all look as good as a scar can look in my opinion. (Yes, I try to find the positive in everything!)

This past week was fun for Harlie and I. Brandy was on vacation, so it was just me and Harlie each day. I can’t believe how much energy that girl has! Each day is a definite improvement from the last, which I think is absolutely incredible. Her energy level has gone crazy! I think she has inherited Tom’s intensive energy level. For those of you that know Tom, you know that he has some crazy energy and can accomplish more in a day than anyone else I know. Well, I can tell you for sure that Murphy did NOT get his energy. Murphy is much more laid back, like me. Ahhhh…. However, I am really starting to see his crazy energy in Harlie. Which is NUTS considering her heart AND lung defects!

We had speech therapy on Thursday and poor Beth could not get anything done with Harlie. Harlie went from toy to toy faster than I have ever seen. She was all over the place! Beth and I were amazed. Beth also said that when that trach comes out and we start working on her speech, she really has her work cut out for her. She said that she suspects Harlie will have a lot to say! She also made a really going point about Harlie’s “new found” energy. She said that Harlie has probably always had that energy level, we just couldn’t see it because she was using it to heal and get better. Now that she’s in her best health EVER, it is starting to show. This certainly explains her lack of naps. It really amazes me how someone who should be more tired than usual because of her heart and lung function – can go without a nap as often as she does. It really is hit or miss if she’ll actually fall asleep. Many days she will just sit in her crib and play and never fall asleep. I just don’t get it. I will say that when she naps – she NAPS! If she falls asleep, she will sleep 3+ hours. And many times we have to go wake her up! I can’t remember Murphy ever not taking a nap because he wouldn’t go to sleep. Or, me ever having to wake him up from one!!! Funny how incredibly different they are.

So, I worked this weekend. And Tom had the kids to himself. He said she did not nap. Murphy did, of course. She just would not go to sleep. So he brought her back downstairs and went on about the day. Well, at about 4:30 she crashed on the living room floor. She’s something.

Well, I will update the site as I can tomorrow to let you know how the surgery went. Please keep your fingers crossed for us that the surgeon will be able to preserve her current feeding tube site and that this surgery is a success.

As always, thank you for your support!

Take care,

P.S. - The site is working on the photo viewing problem and said they should have everything working by Wednesday. So, it's not your computer.

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