Rebekah

Isn't she beautiful???!

Counting Down!

The days are flying fast, and we are trying to prepare ourselves for Rebekah's surgery that is right around the corner. She is scheduled for open heart surgery on November 3. This will be a complete truncus repair, and the surgery itself is anticipated to take 6-8 hours.

Dr. Scott Bradley, the head pediatric cardiothoracic surgeon at MUSC will be Rebekah's surgeon from now on. If you remember from last summer, Dr. Ty Hsia was Rebekah's first surgeon, but he was offered a position at a prestigious hospital in London several months ago, so he is no longer at MUSC.

I found this information online that pretty accurately sums up the extent of Rebekah's truncus repair.

The surgical repair of truncus arteriosus requires the use of heart-lung bypass machine support. It involves three major components:

• Separating the pulmonary arteries from the main truncus (the truncus will remain as the first part of the aorta);
• closure of the ventricular septal defect using a patch
• creating a connection between the right ventricle and the pulmonary arteries using a valved conduit, usually a homograft pulmonary artery.

The one glaring difference between this description and Rebekah's surgery is that Dr. Bradley is likely to remove Rebekah's right lung during surgery. We have discussed the possibility with several of Rebekah's doctors, and the general consensus is that at some point Rebekah's lung will, not might, become infected, and when, not if, that lung becomes infected, it will be very dangerous for Rebekah. In fact, Rebekah's pulmonologist used words like life-threatening infection, and certain emergency resection when I asked if it would be possible for Rebekah to keep her lung. Given that information, combined with Rebekah's cardiologist's opinion, lead us to believe that Dr. Bradley will be removing Rebekah's right lung.

How do we feel about all that? Well, obviously, it was not our first choice! :) But we feel very informed about this decision, and know that ultimately, Dr. Bradley will recommend what is best for Rebekah. There are three criteria that Dr. Bradley will consider during surgery. If any one of the three is not met, then he will remove the lung. Dr. Bradley's criteria are:

1) The lung tissue itself - is it healthy? We know that the lung itself is a good size, but Dr. Lucas told us that often the tissue is dying or decaying when there is no blood flow through the lung.

2) Is there adequate arterial supply? This is the amount of blood flowing to the lung tissue itself. It has nothing to do with blood flowing to the lung to receive oxygen.

3) Is there good (or any!) perfusion? This is the amount of blood flowing into the lung to receive oxygen to carry out to the body. Right now from all of the tests, the doctors are pretty sure that Rebekah has less than 2% perfusion in her right lung.

So, what else has been going on besides surgery talk? Well, Rebekah should be getting some new wheels near the end of October! We have been using our old stroller and pushing/pulling her oxygen tank along with it. To say that it is cumbersome is an unbelievable understatement! Rebekah's new chair/stroller will have an oxygen tank holder mounted on the side so that I can have a hand free for other things. It also has room underneath for Rebekah's O2 monitor if we were out for a long period of time and needed it with us. The seat is completely customizable and will grow with Rebekah. It is also a tilt-in-space seat, which means that the seat rotates from 90 to 180 degrees and stops anywhere in between.

Rebekah's new chair (teddy bear not included)! :)

We have had some fun days just hanging out at home and playing. Aaron and Caleb are very patient with Rebekah and usually let her in on whatever they are playing with.

Aaron and Rebekah

Pretty girl!

Aaron specifically requested this outfit a few days ago because he loves the bracelet that matches it. Guess we'll have to find a fall/winter outfit in these colors so Rebekah can still wear the bracelet. :)

Sweet little peanuts!

Rebekah all dressed up for church!

Something (someone) is missing here..........

Found her!

Rebekah has become more and more mobile lately. It is very unusual to find Rebekah where I left her now. She has become adept at scooting around the house and exploring all kinds of things. I literally "lost" her in the house and followed her tubing to look for her. I found Rebekah in my laundry room with the door closed. She was taking my clean laundry out of the laundry basket. Now if I can just teach her to fold it...... :)

I'm cute.....tubes and all!

I love my swing!!

Now that the weather has been (a little) cooler, we have enjoyed some time outside. We had not been able to take Rebekah out much in the hot summer because it is easy for her to become overheated. She really enjoyed being able to swing and play outside this weekend!

My newest skill!

It took me (or Rebekah) several hours to actually capture this picture. Rebekah has been doing this hand/feet position for a few days. Although she isn't doing more than holding the position for a few seconds, at least she is working at it. I can't say enough about how much the stander has helped strengthen Rebekah's muscles. She really wants to walk and run with her brothers, but is not strong enough yet. She gets an "A" for effort, though! Rebekah is one determined little girl! Just this week in pool therapy, Rebekah stood for almost 5 seconds by herself with no support! That was huge!!!

Rebekah and Uncle David

Thank you all for your continued prayers! We ask that you continue to pray specifically for our upcoming trip to Charleston and Rebekah's surgery. The doctors are estimating a 2-3 week hospital stay if things go well, so it will be a stressful time for all of us. The boys are taking it in stride, though, and we are so thankful for that!

Nancy