We're Back!

What a long trip we had yesterday to Charleston and back! It was a little after eleven last night when we got home, and we were tired! Drew and I and the boys all have colds, so that made the trip a little less pleasant than it otherwise might have been, but overall it was a good trip.

The longest part of the entire procedure was trying to gain IV access so the radiologist could inject the dye needed for the contrast during the CT scan. It took a little over an hour and five sticks before the surgeon's assistant finally was able to access a vein in Rebekah's wrist. What an ordeal! The nurse had given Rebekah a little Versed to calm her before we started, and by the time we finished it had long since worn off. She was also given sedation through her IV before the CT scan was started so that she would be still, so she slept right through the scan and the ultrasound a little later.

The good news is that the radiologist was able to get all of the information that the surgeon needed to make a decision about Rebekah's next heart surgery. The bad news is that the information was exactly what we had been told to expect - no usable collaterals. Rebekah does have some collateral arteries, but they are very, very tiny and not something the surgeon would be able to do anything with. We haven't heard the official word from the surgeon, but based on what our cardiologist shared at Rebekah's last visit, we are pretty sure that the surgeon will be postponing Rebekah's heart repair indefinitely. The two deciding factors for heart surgery will be 1) Rebekah begins to outgrow (in size) the band on her left pulmonary artery and her oxygen sats get progressively lower, or 2) Rebekah begins to show signs of heart failure at which point surgery will become necessary. Until either of those scenarios occurs, we are pretty sure that Rebekah's surgeon will not schedule surgery. At this point, it could be many months before she would need surgery.

The ultrasound of Rebekah's leg/groin area was as we expected. The doctors wanted a good look at the fistula in Rebekah's left leg as well as information about accessibility in both legs for another potential catheterization in the future. The technician performing the ultrasound did not say much, but I did see the fistula still there (although it no longer affects her circulation in that leg). I have no idea what kind of narrowing she saw in the arteries that may or may not affect further catheterizations. I imagine we'll hear from Rebekah's cardiologist later if they found anything significant.

That's about the extent of our trip to Charleston. We are very thankful that it went well and grateful for all of your prayers. We are not planning on church tomorrow as all of us are still sniffing, coughing and have sore throats. No need to spread that around! Please pray that we can get over these colds and that Rebekah does not come down with it!

Nancy

Why do something when you can wait?

While it sounds a bit unconventional in everyday life, I am pleased that this is the philosophy that Rebekah's surgeon and doctors have decided to use in regards to her heart surgery.

Drew and I (and Rebekah) met with Dr. Lucas yesterday (Wednesday) to discuss the results of the catheterization that Rebekah had two weeks ago. While we knew that the doctor did not get all of the results that he wanted, we did not realize how little he got. I think I mentioned on here at the time of the cath that the doctor was not able to gain access into Rebekah's artery in her right leg/groin area. We didn't realize that was such a big deal until yesterday. Basically, the doctors only got half of the information they were looking for since they could only go through one artery.

I like to play in my exersaucer!

From what information they did get at the cath, it does not appear that Rebekah has any usable collateral arteries to create a right pulmonary artery with. Dr. Baker, who did the heart cath, had told us that Rebekah would likely go into her heart surgery without a sure plan of whether or not those collaterals would be usable. When the surgery was completed, the surgeon would be able to tell us that he either was able to use the collaterals or he wasn't. That simple. Or not.

My first bite of ice cream....yummy!! (Please excuse the bedhead!)

Apparently Dr. Bradley (surgeon) wants a more definite game plan before going into surgery with Rebekah, so we are traveling back to Charleston tomorrow (Friday) for a CT angiogram and an ultrasound of Rebekah's groin. The CT scan will hopefully give the doctors and surgeon a better idea of the growth (or non-growth) of Rebekah's collateral arteries. From there, the surgeon can proceed with plans for Rebekah's heart surgery. The ultrasound we are a bit unclear about. All of the people "in the know" were apparently already gone for the day before we were called and informed of the ultrasound this afternoon. We are guessing that it is to check on the healing of the fistula that was made during the last catheterization, but we will have to wait until tomorrow to find out for sure.

I'm practicing sitting up more and more!

Based on the results of tomorrow's CT scan, the surgeon will decide on one of two plans. The first would be that Rebekah's collateral arteries have grown amazingly (reality: no one in the medical field believes this to be the case) and Dr. Bradley would proceed with a full repair of Rebekah's heart and lung in the next few weeks.

Finally meeting Uncle Carl and Aunt Wilma. We loved having them visit!

The second, and much more likely, outcome of tomorrow's CT scan is that the doctor finds no usable collateral arteries and the plan will be to wait as long as Rebekah's heart shows no signs of failure to do her heart repair. This option would commit her to having a single-lung physiology for the rest of her life (barring a miracle and the collaterals actually growing). The reason for waiting is basically the title of my post. If Rebekah doesn't actually need to have surgery right now, and she is no worse off for waiting, why rush into surgery just to have it done?

I'm working on clapping my hands now.

The way Drew and I are choosing to look at waiting is that it is all the more benefit to Rebekah. First and foremost, we have time to continue praying for those collaterals to grow. The doctors have only said that it is unlikely for them to start growing at this point, but it's not impossible. So, we continue to pray. Secondly, waiting to have surgery will allow Rebekah to continue growing, getting stronger and getting bigger. All of those things will be to her advantage going into the surgery. Thirdly, the longer we wait to have this surgery, the longer we can wait to have the next surgery. Repeat surgeries before adulthood are caused by growth, not the wearing out of parts. So, the bigger Rebekah is when she has her initial heart repair, the bigger the parts the surgeon can use and the longer we can postpone Rebekah's next surgery. Sounds good to me!

Helping Mommy make Zachary's birthday cake. Mommy let me try some frosting, but don't tell!!

So, tomorrow morning we are leaving for Charleston in order to be there for Rebekah's 1:00 CT scan. Please pray that the scan goes well and that the radiologist can get clear, accurate pictures of Rebekah's anatomy. If the CT scan is not successful, Rebekah will be having another catheterization in the near future, and this time it would be a little more invasive in order for the doctors to find the information they need.

Looking cute in my girly overalls!

In other, very good news, Rebekah's diarrhea has been gone for a little over a week!! The reason? We started feeding her food! I know, seems like such a simple thing, but with Rebekah, we have learned that nothing is simple! :) Rebekah has had pears, squash and sweet potatoes in the last two and a half weeks. She is loving food and other than being a little uncoordinated in getting the food off the spoon, she is doing a great job at eating!

I love eating food!

Please remember us in prayer tomorrow as we will have a very long day. We are making this a one-day trip in order to avoid the cost of staying over tomorrow night. So we will have 8+ hours of driving plus time in the hospital tomorrow. All of that and neither Drew nor I are feeling well right now. We are still fighting allergy and cold symptoms. Above all, please pray that the tests go well and pray, pray, pray that those collaterals start growing!

Nancy

A quiet week

Not much to update on other than we had a nice "normal" week. No doctor appointments and all were mostly cold free. Bekah seems to be fully recovered from her heart cath. She is sitting up now for short amounts of time by herself. We went 4 or 5 days without the need for oxygen support.

Rebekah got to celebrate Zach's 8th birthday at home with him. He seemed really happy to have all of us home on his birthday.

This morning seems to be the beginning of a new week. Three of the boys are coughing and Rebekah needed oxygen through the night. She seems to be getting another cold this morning along with Mommy. We will see how the day progresses.

This is a big week for heart matters. We meet with Dr. Lucas on Wednesday to discuss the surgery plan for Rebekah and get the projected surgery schedule. We may only get a week time frame not an exact date. The surgery schedule changes weekly depending on the priority of the patients on the list.

Not much happening at the moment. We will let you all know all about the meeting on Wednesday.

D

No clot!

Sorry to make you wait all night for information, but that's what we did in the ER! It was almost 2:00 in the morning before we got home, and I wasn't awake enough to coherently post.

Rebekah does not have a clot in her leg as far as the radiologist was able to tell. The doctors both in Greenville and at MUSC think that her artery is still spasming from the catheter being inserted. This is something that should go away over time, and actually, the doctors had thought that it would have stopped by now. The spasms contract the artery, decreasing blood flow to Rebekah's leg and foot and making it seem as if there is a clot. Her leg is cool to the touch and the pulse is weak in her left foot. We were sent home with instructions to watch the color of her leg and the capillary refill to make sure the spasming has not created a clot.

One thing that the radiologist did find was a fistula at the catheter insertion point. Probably what happened is when the catheter was inserted into Rebekah's artery, it nicked the vein at the insertion point. That created a little spot where the blood can flow between the vein and artery. It is not dangerous and should correct itself over time. The most Rebekah may feel is just a tingling sensation at that fistula site. Even if it never corrects itself, it will not pose any problems for Rebekah.

That's the news for now. Please pray for the spasms in Rebekah's artery to stop so the risk of clotting will diminish. Other than that, Rebekah is happy and back to her usual self!

Nancy

We are Gone again!

We hate to have to tell you this, but we are heading back to the hospital here in Greenville. We discovered today that Rebekah's left leg is cooler to the touch then her right leg. Also she has had a hard time with her sat monitor not picking up while the lead is on her left leg. This is something we were told to watch for after her heart cath. The left leg is the site where they put the cath in. There is a possibility that she may have developed a clot in her leg. At least this is what we were told could happen, so we have talked to MUSC and they wanted us to take her to the ER to have an sonogram done on her leg. They will be checking to see if there is a blood clot or not.

Hopefully they will figure out what is happening and be able to treat it with medication. I will update you further when I hear from Nancy.

For now the best we can do is up hold Nancy and Rebekah in prayer. The Lord knows all and will watch over them.

D

We are home!!

We are glad to all be at home. Rebekah is a good little traveler. We are all tired and needing some rest. We are crashing and will post some more about our trip when we have time this weekend. The swallow study did not turn up anything out side of normal.

Thank you all for your prayers and support.

D

PCICU for tonight

We have been in to see Rebekah in the PCICU. She was awake and cranky for a while. We were able to give her something to eat and some pain medicine. She is peacefully sleeping now. Due to the late hour of finishing in Cath lab and a shortage of beds Rebekah is staying the night in the PCICU.

We have a swallow study scheduled for sometime tomorrow and probably another night here in the hotel to give Rebekah some rest before we head home.

We do not have a lot of information as far as her heart at the moment. We were told all went really well and she did great. We also were informed that she is ready to move on to the next step in correcting her heart and other problems. We will most likely not have a lot of details until we meet with Dr. Lucas in about 2 weeks. At that time we will have a definite plan and schedule to surgery. My best guess is still on target for next month or so.

We are very thankfully that the Lord carried Rebekah thru today's procedures with no problems. Now time for Mom and Dad are heading to go get something to eat and crash at the Hotel for the night. We will pass on all of tomorrow's adventures when we get there.

D

Finished!

The doctor is finished with the cath! We don't have any other information and it may be a while before we speak to the doctors to see how things went. I'm not sure when the next post will be, but I just wanted to let you all know that the heart cath is over.

Nancy

6 O'clock and all is well!!

Rebekah is still in the cath lab. The doctors are taking pictures and measurements. All is still going well.

Another Update

Rebekah is still in the cath lab. No changes and all is going as planned. That's all we know for now.

Nancy

Catheterization Update

Finally! I am now at a place that I can get my computer out and give an update! Sorry for the short and misspelled posts the last couple of times, but we have only been able to update from our cell phones until now. Let me recap our morning!

Rebekah had to be checked in at the hospital at 7:15 this morning. We were up and at the hospital in plenty of time. Rebekah could not have anything by mouth after 3:00 am, but she was happy when we checked in and didn't seem to be hungry. After checking in, we went up to the same-day surgery room to wait for our turn.

We knew before today that Rebekah would be second case in the cath lab. What we did not anticipate was having to wait for so long! The first case did not get taken into the lab until 8:00, and by this time, Rebekah was starting to get hungry. Our nurse gave us permission to feed Rebekah some Pedialyte, so we gave that to her between 8:30 and 9:00. I am so thankful we were able to let her have that! As it turned out, the case before us had some problems and the doctors took much longer than they had anticipated before they finished that case. Rebekah was not taken back to the cath lab until almost 2:30 this afternoon.

The first item on the agenda was the bronchoscopy. This is the procedure that Rebekah's pulmonologist wanted to have done to check Rebekah's trachea and bronchial airways for tracheomalacia (underdeveloped cartilage in the trachea and/or airways). The thought was that if Rebekah had tracheomalacia, it would explain some of her wheezing and respiratory problems and why she does not respond to the inhaled medications like the doctors think she should. The bronchoscopy was done rather quickly and the ENT came back to talk to us around 3:00. He could find no areas of tracheomalacia and said that from an anatomical perspective, everything looks fine. His recommendation is to have a swallow study done tomorrow to check for possible aspiration. If you remember, Rebekah had three swallow studies done during her first month at MUSC, so this is nothing new to us. The ENT did say that it would be unusual for her to begin aspirating again after having done well for several months, but he has seen it before. If there is a way to be unusual, Bekah probably will find it! :) We aren't sure yet what time tomorrow that will be, but it is going to be put on the schedule.

The second item on Rebekah's cath lab schedule was a sedated echocardiogram. She has echos done once a month or so at the cardiologist's office, but the chances of her laying perfectly still through the whole procedure are non-existant. So while she was already going to be sedated, the doctors wanted to get some really good pictures from the echo. We received a page just a few minutes after 4:00 that the echo was done and they were beginning the catheterization.

So, that brings us up to date on Rebekah's progress. It will likely be close to 6:00 before she is done with the catheterization and she most likely will be moved to the PCICU for recovery. She will definitely be staying overnight and will have a swallow study done some time tomorrow. We will post again when we have more information!

Thank you for all of your prayers, comments, Facebook posts and texts. We love you all!

Nancy

Rebekah left for the cath lab around 2:15. Drew and I are heading for lunch (finally!) and then coming back to wait. The doctors estimate she will be done by 6.

Still waiting for our turn to go to the cath. lab.

Heart cath day

We checked in about 7:00am. Bekah has had a EKG and a chest x-ray. She is sleeping away the time waiting on the doctors to come take her to the cath lab. Should be sometime before Noon.


Drew

Next week off to MUSC again.

Just a quick update. We are thankful that Mom and Rebekah have been home for a little more then a week from the hospital. Just as we are settling in, we are off this coming week on another adventure.

We are heading to MUSC for our long awaited heart cath. procedure. We are scheduled for second case in on Tuesday morning. We have been told that this can be a 4 or 5 hour procedure. We hope to get lots of good information to be able to make solid decisions on when and how best to move forward with Rebekah's heart repair.

They also are going to be scoping Rebekah's lungs and bronchial tubes for a possible additional side effect from the DiGeorge. Rebekah's pulmonologist thinks that Rebekah's trachea and/or bronchial passages are "soft," meaning they have not become firmed up like they should have in a baby Rebekah's age. If they find what they think is happening it will explain some of Rebekah's wheezing and heavy breathing. She seems to not always respond to the breathing treatments and medications. That could be because it is a physical problem and not one that can be treated with medications. In time this is something that she should grow out of.

While the heart problem is something we know about and have been dealing with for sometime now, we are still finding all the little quirks about DiGeorge and how it shows up in our little lady.

We will be traveling Monday to Charleston and hopefully back home by mid-week. We will keep everyone up to date as we progress through these tests.

Thank you everyone who follows along with Rebekah for your prayer support and thank you to all of who have graciously contributed to Rebekah's fund to help with our expenses. We appreciate it greatly and are so thankfully that the Lord has allowed you to help us in this way.

D