Cardiology Update

Yesterday was Rebekah's cardiology appointment, and while there, we also popped in to see the dietitian for a weight check. First, the cardiology appointment....

Rebekah's echocardiogram went well, as usual. As much as they can see on the echo, Rebekah's heart function looks good and she does not seem to be in heart failure. However, Dr. Lucas told us that because Rebekah's heart is essentially functioning as a single ventricle (because the blood mixes back and forth on both sides of her heart it is as if she only has one side working), it is almost impossible for them to measure the amount of heart failure, if any, that Rebekah is experiencing by echocardiogram. The only true way to determine if Rebekah's heart is failing is by heart catheterization, which is coming up at the end of January. Dr. Lucas said the cath lab doctor, Dr. Baker, will measure something called QPQS, which is basically the amount of blood flowing to the lungs and the amount of blood flowing to the body. That will give the doctors the information to know how hard Rebekah's heart is working to keep her lungs and body supplied with oxygen. In turn, that information will tell us how close she is to needing her heart repair.

Dr. Lucas has also had some conversations with Dr. Bradley (the head cardio-thoracic surgeon who will be doing Rebekah's next surgery), and Dr. Bradley feels that the collateral arteries that we had hoped were growing are probably not growing. Based on pictures and notes from Bekah's original surgery and information that Dr. Lucas has been able to send to Dr. Bradley, he feels that she really has not shown any signs that those collaterals have grown. We are praying that Dr. Baker will find out differently in the cath lab, but we are preparing ourselves for the difficult decisions that will come if Rebekah does not have large enough collaterals to work with. Basically, in Dr. Lucas' words, we will come to "a fork-in-the-road decision" about what to do. We can possibly do another "temporary" fix if her heart allows, to try to give the collaterals more time to grow, but everyone is pretty much agreed that if they haven't shown signs of growth by now that they probably won't. Or, we can proceed with the heart repair, and Rebekah will only have one working lung. Ever. From what Dr. Lucas said, there really isn't any middle-of-the-road on this one. I'm not really sure what kinds of options are available, but we have been told there are several options for the heart repair if the collaterals have not grown. I think the idea is to keep from stressing her working lung too much in the process of repairing her heart. Of course, the big day for the cath lab is January 26, and those results will answer many of the questions we have right now. We probably will not know much, if anything, when we leave Charleston, but we are having a meeting with Dr. Lucas on February 3 to discuss the results of the cath lab and weigh in on the opinions of all of the cardiology team from Charleston. We won't actually be meeting with the team, but they will send the results and opinions from their big meeting to Dr. Lucas for him to share with us. We will, of course, be meeting with them all before Rebekah's heart repair in Charleston.

Dr. Lucas is a little concerned (understandably) about Rebekah's ongoing congestion and her on-again-off-again fevers. He mentioned that if we come down with something more serious that what she was hospitalized with a couple of weeks ago, or if this turns out to be another lingering illness similar to the last one that required hospitalization, he will be likely to send us to Charleston. Ugh. We, of course, want to do what is best for Rebekah, but Charleston is a logistical nightmare right now! There are two reasons why Dr. Lucas feels that Charleston would be a better choice in those events. First, if Rebekah continues to have lingering, on-going illnesses, there is a good chance that her heart is playing more of a role in her health than we think it is. By being in Charleston in the cardiac unit, they will be able to monitor and test things much more closely and accurately than here in Greenville. Second, Rebekah cannot go into the cath lab while she is fighting a respiratory illness. The results would be too inaccurate to be of any help. So, if Rebekah is in Charleston, they could work to get her over the respiratory illness and then choose the optimum time to go to the cath lab for the best possible results. Please pray with us that Rebekah will fight off any little colds and stay healthy. And please pray that if we do go to Charleston, the logistics will be worked out (care for the boys, transportation, finances, lodging, etc.).

There was a bright spot in our visit yesterday.....Rebekah is gaining weight!! It seems that the continuous feeding through the night is really working, which makes getting up in the night much easier! :) Rebekah now weighs 10 pounds and 1 ounce and is 23.25 inches long! In the last month or so, she has gained a little over a pound (because she had lost some weight she was less than nine pounds) and she grew about 3/4 of an inch! We are so excited!!!

We are off to a rather lengthy pediatrician's visit this morning. Rebekah has her six month well-check and immunizations, and there will be a lot of ground to cover regarding Rebekah's care. We will fill you in on all of the details and try to get some new pictures posted soon!

Nancy