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

So far, so good

We are now moving into Tuesday, and I am happy to report that Rebekah does not seem to be any worse than she was over the weekend. She still has an off-and-on-again low-grade fever, and she still has upper respiratory congestion, but it has not gotten any worse.

This afternoon we are headed to a cardiology check-up, followed by a visit to Rebekah's pediatrician tomorrow. Please pray for good results from those visits and improvement of Rebekah's cold symptoms!

Nancy

Marching into 2010

Update:

Rebekah is congested, but her lungs are clear at this time. For now, we watch her and wait to see if her little body can fight this cold off. If not, we'll most likely be back at the hospital for some oxygen and fluids. So far Rebekah has been resting well since we have gotten home. Please pray that she is able to fight this cold off before it becomes worse!

Original post:

We are off to again to the doctors. Rebekah is sick again and fighting a new cold. She has had a temp. for the last 2 days and seems to be very congested again. She was coughing and having a more labored time breathing this morning. So Mommy and Rebekah are off to the Doctor's to have her checked out. Hopefully this will not turn into another trip to the hospital this week. I will update you all when I hear from Nancy.

D

Six Months!!

Miss Rebekah is now six months old! In some ways it seems like so much longer; in other ways, it's hard to believe that we have had her for that long. Rebekah was able to come home from the hospital on Thursday, Christmas Eve, and we were all happy to have her home for Christmas! We have seen a great improvement in Rebekah's breathing; she no longer has a raspy sound to her breathing and is more alert and energetic than she was last week.

Rebekah didn't really have much to do with Christmas and presents, but she did look cute!

Just for fun, we included Rebekah in our Christmas dinner. She had her first taste of applesauce and seemed to like it. We had a few strange looks, but each time the spoon came close to her mouth, she opened up for more! We aren't pushing food right now and will probably hold off on solid foods mostly until after her heart surgery. It just takes more energy for Rebekah to eat and digest solid foods, and energy is something Rebekah doesn't have a lot of! Once her heart surgery is behind her, she will be using a lot less energy to breathe and will have more left for the fun things.

What is this stuff???

Rebekah continues to have therapy twice a week to work on her development. She is doing much better at holding up her head and rarely needs head support anymore. We are working on sitting up with pelvis support, rolling over both ways, playing with toys while sitting up and eventually drinking with a sippy cup.

In the area of weight gain (or lack thereof), we are back to nightly g-tube feedings. Rebekah is getting about 8 ounces (almost half) of her daily intake by g-tube. We are slowly working on increasing that to 10 ounces at night.

All wrapped up with a big red bow!

And, we have a date.....for the cath lab, that is! Rebekah will be going back to MUSC on January 26 for her heart catheterization. They will thread a catheter from her groin up to her heart in order to measure pressures in her heart and lungs. The doctors will also be able to get measurements of both her heart and the possible collateral arteries that might be used for a right pulmonary artery. There are basically three possible outcomes from this procedure. One, Dr. Baker finds a collateral artery (or more than one) large enough to make a pulmonary artery to supply blood to Rebekah's right lung. Surgery would then be scheduled to make the pulmonary artery and repair Rebekah's heart. This outcome is what we are praying for! It is the best possible scenario for Rebekah.

Two, a collateral artery is somewhat larger than the rest, but not large enough to use for a pulmonary artery, so a stent or balloon procedure would be used on the collateral artery to try to enlarge it. The heart repair and pulmonary artery surgery would be scheduled based on the probable growth and use of the collateral artery. While not ideal, at least this outcome would mean an eventual full repair of Rebekah's heart and lung.

Three, none of the collateral arteries have grown enough to be used as a pulmonary artery and Rebekah will never gain the use of her right lung. Obviously, we would be very disappointed at this outcome. We would love for Rebekah to be able to have some use of her right lung, even though we are aware that she will probably never have full function of it in any scenario. If no collateral artery can be used, we would then have to reassess how to proceed with Rebekah's heart repair without causing undo stress on her working left lung. We are praying that we don't have to face those decisions.

Sweet girl

Wishing all of you a Happy New Year!!

Drew, Nancy, Zachary, Justin, Aaron, Caleb and Rebekah Grace

Rumor

Rumor has it that Miss Rebekah will be going home tomorrow....just in time for Christmas! She has been showing steady improvement, and the doctors feel that she is well enough to go.

We will be feeding Rebekah through her g-tube during the night when we are home. It is an attempt to decrease the work her heart is currently doing while eating. So at least half of her daily intake will occur overnight. That will take a little getting used to for all of us as Rebekah had previously been sleeping through the night. Actually, she will probably still sleep through the night. I will be the one setting an alarm to add more formula to the pump. It will be good for Rebekah, though, to have the extra calories without working for them.

Rebekah also received her first Synagis shot last night. She will receive this series of shots monthly for the next several months. Synagis is used as a protection against the RSV virus, which could be fatal for Rebekah. RSV is a normal cold for most adults and children over the age of 2, but for premature babies, or those with other heart and lung problems, RSV would cause a severe risk from complications and even death.

After being discharged from the hospital, Rebekah will have several appointments in the next couple of weeks. She will be seeing her cardiologist for a follow-up visit to make sure her heart and lungs are still working well. We will be having an appointment with her gastroenterologist and possibly another night in the hospital for some additional tests if they feel that is necessary. Rebekah has been struggling with GI issues (diarrhea and lack of weight gain) off and on for the last couple of months, and we all feel that it is time to do some further testing to see what might be going on. We will be back to our dietitian for a weight check again, and we will be seeing the pediatric surgeon's office here to have a new type of g-tube placed. We have had several problems with the Mic-key button that Rebekah has and she is currently using her third one in about seven weeks. Mic-key buttons should last between three and four months, but Rebekah's are only lasting about two weeks before they develop a leak and deflate. I had a consult with a resident from the pediatric surgeon's office on Monday, and they recommended a different type of g-tube that does not have a balloon on the end. For some reason, they have exactly the same type of problem that Rebekah has had with most of the babies that have the Mic-key button.

Also in January, we have follow-up appointments with Rebekah's pediatrician, endocrinologist, infectious disease doctor and geneticist. Sometime in the next few months, Rebekah will be referred to an opthamologist and an ENT or audiologist to have her vision and hearing checked. I think January will be a busy month!

Please continue to pray that Rebekah rebounds from this illness and that she and her brothers (and parents!) will be able to stay well this winter. The three older boys all came down with strep throat while we were in the hospital, so thankfully Rebekah was not around them. They have been on antibiotics and are hopefully on the mend now.

We are looking forward to spending Rebekah's first Christmas at home!!

Nancy