I hope all of you had a wonderful Thanksgiving holiday! We definitely enjoyed ours! It has been nice to have the boys have a few days off school, but it is time for them to go back. Too many days off makes for restless little boys! We did get most of the Christmas decorations up, so that kept us busy for several hours.
Rebekah is doing very well, and for that we are so thankful. She is slowly starting to come back to the little girl that we had before surgery, which means that she is moving around and getting into mischief! :) We are pleased that she is feeling well enough to get into things, so we're not complaining!

I love my Oreo cookies!!
You can see from these cookie pictures how well Rebekah's scar is healing. It is definitely more red than it was prior to surgery, but unless you compared before and after pictures, you probably would not have guessed that Rebekah had surgery three weeks ago. The two sites where Rebekah's chest tubes were are still pretty big scabs, but we are very thankful that they did not get infected. For a few days after we got home they were quite raw and open. We very diligently slathered them with antibiotic ointment and changed the dressings frequently. While she will definitely have some scarring, I'm glad that the areas are healing finally.
On the outside of Rebekah's heart scar, the skin was literally glued back together with Dermabond. It will make for a much smaller, smoother scar than if there had been stitches on the outside. Underneath her skin, there is a running zig-zag stitch starting at the top and working down to the bottom. Dr. Bradley used a material that is dissolvable, so over time the stitches will disappear.
Rebekah had a good check-up with our Greenville cardiologist. He said that echocardiograms are a very subjective measure of heart function, so he can't really tell us how the function of the right side of Rebekah's heart is doing compared to how it was in Charleston. He did feel, however, that the function of the right side was at least in the low-normal range. We are all hoping that the function will improve over time.
As far as Rebekah's pressure, it has come down some according to the echo. Again, the echo is not a perfect measure, but it at least would give us an idea if it was getting drastically higher. We certainly hope that the pressures are coming down as the echo has indicated. Dr. Lucas will continue to watch the pressure here, and we will get a true reading during Rebekah's heart catheterization in March.
One exciting piece of information that Dr. Lucas gave us is that he intends to wean Rebekah's lasix dose over the next few months. Rebekah has been on Lasix since birth, but Dr. Lucas feels that if she continues to keep the fluid off her heart and lungs, then he sees no reason to continue the medication. On Rebekah's next visit she will have another echo and a chest x-ray. If it all looks good, we will be dropping one of her two daily doses. We will continue giving Rebekah one dose of Lasix per day for a few months till we see how her body tolerates the missed doses. If all goes well, Rebekah could be off Lasix by spring!
Rebekah is making steady progress back to the physical activities she was doing prior to surgery. One of the best things has been this little music toy. Rebekah loves to be a big girl and sit on the bench by herself. She has been able to maintain fairly good balance for twenty or thirty minutes at a time. There are shapes that light up and play music when Rebekah pushes them. Rebekah loves music, so this is the perfect toy for her! Dr. Lucas felt that Rebekah's stander could put too much pressure on her chest, so we are holding off on that for now. Rebekah has been in her walker several times, though, and she is taking 5 or 6 steps with someone holding on to her waist for balance.

My dimples are finally back!
For now Dr. Lucas is holding off on resuming Rebekah's therapies. He wants to give her chest a little more time to heal so that therapy will not stress or hurt her. When Rebekah has her next appointment in December, he will re-evaluate therapy based on how well she is doing.
Rebekah's piano concerto!
I finally have my computer up and running now! I downloaded over 400 pictures for the month, and I am working on editing them. When I get them done, I am planning to post pictures from Rebekah's hospital stay in their chronological order. I will be sure to link to those pictures so that you can view them if you wish. We looked back at the pictures last night and were amazed at how far Rebekah has come in three weeks. Sometimes it seems like she is slow to make progress, or that she lost some skills during her hospitalization and has not yet gained them back, but the progress she has made is astounding. We have much to be thankful for this year!!
Nancy







1 comment:
Oh how it is sooooo GREAT to hear that Rebekah is doing well since she made it home. The pictures are great and the concert is AWESOME. The best one I have heard in a long time!! :) As always, thansk for the update!
*God is Good*
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