Update #7

This should be the final surgery update for this surgery!!!  Yippeee!!!  Dr. Bradley surprised us by coming into the waiting area before we got the text that he was finished.  It was a very nice surprise to see him!  :)

The first good news we had was that Dr. Bradley was smiling!  Those of you who know him in real life know what a good sign that is!  :)  He said he was very, very pleased with how things went, and that Rebekah tolerated everything well.  They did put her on the heart/lung bypass (ECMO) as we suspected, and they did replace her original conduit.  Dr. Bradley was able to put a little bit bigger conduit in than what she had before.  I believe she had a 10 or 12mm conduit before, and he replaced it with a 14mm.  So, not a big change, but one that he felt was necessary.

One surprise we had was that in the sedated echo right before surgery, the doctors noticed an area of enlarged muscle just under her conduit.  It could be that this area was also a contributing factor to the high pressure in her heart/lungs.  Anyway, Dr. Bradley was able to cut away some of that muscle to allow better blood flow and he removed some scar tissue around it.  The new conduit that Dr. Bradley put in actually has a human donor valve in it this time around.  Rebekah's previous conduit had a bovine valve.  He said there should not be any noticeable or medical difference to Rebekah with one valve versus the other.  I get the feeling that it is more of a decision of what they have on hand to use.

SO....the big question....YES!  Dr. Bradley was able to attach Rebekah's collateral artery to her pulmonary conduit.  He had to use an additional conduit (tube) to make the collateral stretch far enough to attach it.  Drew asked Dr. Bradley if that smaller tube/conduit would need to be replaced sooner than Rebekah would have otherwise needed her larger pulmonary conduit replaced.  Dr. Bradley just smiled and nodded a little bit and said, "It's likely."  We'll cross that bridge when we get to it.  For now we're thrilled that she will be able to have some use of her right lung!!!

So, all total Rebekah was in the OR about 10 hours, with somewhere between 8 and 9 hours of actual surgical time.  We know that she is back in the PCICU because all the other parents got kicked out when she started rolling.  (For those of you not familiar with PCICU procedures, when a case comes back from the OR, or when a new case comes into the PCICU for the first time, it is called "rolling."  As in the bed is "rolling" into the PCICU.  It is the only time that parents/visitors are not allowed in the PCICU.)  We were told that we could go in to see her around 5:00, so we have about 20 minutes or so until we can kiss her little cheeks.  :)

The plan is to take recovery very slow.  The doctors are going to monitor Rebekah's pain, breathing and heart rhythms for a few hours.  When they are sure she is stable, they will slowly allow her to start waking up.  From there it will just depend on how fast her body wakes up and recovers from surgery.  Dr. Bradley did do a lot during surgery today, so it will take a little while for her body to adjust.

Thank you all for praying for us and Rebekah today.  We are just so, so thankful that God worked through Dr. Bradley to help our little girl.  We are certainly blessed beyond all that we could ask or hope.

Nancy

Update #6

Update #6:  "Rebekah just got off the heart/lung bypass machine.  They are working on getting some bleeding stopped and closing her up.  May be an hour or so more."

Yay!!  It sounds like they are going to finish up sooner than they thought in update #5!  That's good news!  We think, from talking to the surgeon on Friday, that being on the heart/lung bypass machine means that she had to have her original conduit replaced and that he wasn't able to just patch into it with the new conduit.  Of course, this is just an educated guess, since we haven't specifically heard that from the surgeon or medical staff.  Will be anxious to hear directly from the surgeon what he was able to do.  Definitely will mean a little extra recovery in the PCICU after having been on the heart/lung bypass (also known as ECMO).

We are off to grab some lunch quick, so our next update may be a bit later.  Will keep you all posted!!

Nancy

Update #5

As of about 1:15, "They are still working away, about halfway done maybe.  All is going well. Will send another update in an hour."

Wow.  We are more than six hours into surgery, and about halfway done.  It's going to be a very long day!  We knew that surgery could be 10+ hours, and it certainly looks as if that will be the case.  By far, her longest surgery to date (the longest previous surgery was about 7 hours).  Please pray for wisdom, strength and endurance for Dr. Bradley.  I cannot imagine working on something so tiny for as long and tediously as he is working on our daughter's heart.

Nancy

Update #4

"Still working away.  Rebekah is very stable. Will update again in an hour."

Very, very thankful that Rebekah is doing so well!  One of the surgeon's concerns was the pulmonary hypertension that Rebekah battles in her left lung, so it is good to know that so far it seems that she has been unaffected by this.

There is really no way to guess how much longer the surgery will last.  Since we have gotten very vague updates, there is no way to predict exactly how far Dr. Bradley has gotten and how much he has left to do.  We'll continue updating each time we hear something new!  Thank you all for checking in and praying for Rebekah!!

Nancy

Update #3

"They are working away.  All is going well.  Will call back in an hour with another update."

Sounds like things are progressing well.  Mommy would like a little more detail, but I am happy to know that things are going well so far.  I'm working my way through photo editing to hopefully have some pictures to post in a little while.  It's keeping me busy, anyway!  :)

Nancy

Update #2

Things are still going well.  Two and a half hours into the surgery and Dr. Bradley is still working his way through the scar tissue to get to the "real" surgery part.  Scar tissue is completely normal and comes from Rebekah's previous surgeries.  We anticipated some of this, but usually it only takes an hour or so to work through it.  Dr. Bradley also cleans it up so that the next time he has to go in for surgery it will not be built up any more than it has to be.  Thankful to have such a great team of doctors, nurses, technicians, and anesthesiologists working with Dr. Bradley today!

We should have another update in roughly an hour.  We will post again with any new information as we get it!

Nancy

Update #1

We got our first update about 9:15 this morning.  It says “Started on time, all is going well.  Working on cutting through the scar tissue.” 
 

It will take Dr. Bradley quite a bit of time to cut through the existing scar tissue and clean up the incision area (from the previous surgery) before he moves into the lung/artery area.  As Mr. Pat, Rebekah's anesthesiologist, said this morning, "We're expecting a long day in there."  

We anticipate our next update coming around 10:30 or so unless there are problems between now and then.  Keep praying for our precious girl!

Nancy

Wonderful Day

I have so much to post about our day and weekend, including pictures, but not tonight!  :)  Tonight I will be trying to cat nap in between giving meds, changing feeds and getting up to be at the hospital by 5:30am.  Rebekah will be taken back to the OR around 6:30 in order for the team to get the prep-work started.  She will be given Versed (an anti-anxiety drug) before she leaves us, so that she will be relaxed and won't feel any fear or anxiety.  The anesthesiologist, Pat, will be taking good care of Rebekah tomorrow.  He has been with Rebekah for several surgeries and catheterizations, and he takes care of her like she is one of his own grandchildren.  We just love the way he loves Rebekah!  Once Rebekah is in the OR, she will be given an anesthesia and then the team will begin placing IV's, arterial lines, a catheter, multiple  monitors and probes, and bringing her body down to a lower temperature so that surgery can begin.  The plan is for surgery to begin around 7:30; actually we have been told that Dr. Bradley likes to begin his surgeries at 7:30 sharp!  We will be updating both Facebook and the blog throughout the day tomorrow as we get updates from the OR.  I would expect that our first update will probably be close to 9:00.  Thank you all so much for your comments, encouragement, help (both for our expenses in Charleston, and help at home with the boys and grandparents), and most importantly your prayers.  Please continue to pray for Rebekah tomorrow and as she recovers.

Nancy

Long Day!

We made it!!  Thank you all for praying for Rebekah today.  The schedule ran as smoothly as I have ever seen on a pre-op day.  There was a bit of a snag in the admissions office this morning since Rebekah was a last-minute change to the surgery schedule.  They did not have her updated surgery date and paperwork ready, so it took a little longer than usual to get through the admissions process.

Once that was done, though, we sailed right through the morning.  As soon as we got to the pre-op room, the nurses were waiting on us.  They got her height (33 and 1/2"), weight (23 lbs.), oxygen sats (97-100%) and blood pressure (86/43).  The nurses had hardly finished that when the EKG technician came in to do Rebekah's EKG.  Rebekah was as good as gold, and they got a perfect reading the first time!  As soon as she was done, we headed straight down to x-ray where we waited for a total of TWO minutes before we were called back to have Rebekah's chest x-rays done.  Back up to the pre-op room just in time to walk back out to echo.  Rebekah did beautifully for both her x-ray and echo.  No sedation needed!!

We were back to the pre-op room, and that's when things took a big stall.  We were waiting for the doctors, surgeon, and surgeon's assistant to come in and look over all of the tests and x-rays and talk to us about surgery and sign consent forms.  We waited and waited and waited and waited and...you get the picture.  :)  Hospital time is like no other time in the world!  So finally about 4:00 all of the doctors had made their rounds, talked about the surgery, recovery, possible risks, complications, and legalese!

There really were no big surprises today from a surgery standpoint.  Dr. Bradley still has the same plan that we discussed several weeks ago in our phone conversation.  He told me today that at least he has a plan to start with and that he would be "making it up as he goes" once he actually gets into Rebekah's chest.  He is a little concerned about having to tie this new artery into Rebekah's pulmonary conduit because the conduit is working so well.  Dr. Bradley said that he really doesn't want to mess with that conduit, but we don't really have any other options.  So please pray for no complications!

I think Rebekah (finally!!) just went to sleep, so I'm going to sign off and join her.  Please pray that she (and I!) will be able to sleep tonight.  She was very tired and grumpy at dinner tonight, but when we got back to the hotel and I put her in bed, she was wide awake and bouncing (literally!).  She does not need to go into a major surgery sleep-deprived!

Thank you all for your prayers and comments both on the blog and facebook.  We are so blessed by so many of you praying and caring for our family!

Nancy

We Made It!

Very short post to let you all know that Rebekah and I made it safely to Charleston around 10:30 tonight.  We are settled into our room and I am (still!!) waiting for that little stinker to fall asleep.  She had just enough sleep in the car to not want to fall asleep again now.  :)

We will be up bright and early for Rebekah's 9:00 pre-op schedule tomorrow.  It will be a long day, and I will not have my computer with me.  So the next chance I get to update will probably be tomorrow evening.  Please pray everything goes smoothly tomorrow!

Nancy

Bumped

Well, we all know it can happen, and sure enough it did!  Drew answered the phone call from MUSC around 8:00 this morning, and we were given two options:  give up Rebekah's surgery date on Wednesday (and get put back into the schedule for another 60 or so days from now), or scramble and be in Charleston this evening for pre-op tomorrow and surgery on Monday.  We were left with the distinct impression that we had a choice to make, but they were really hoping we would make it down there tonight.

So after scrambling through 20 minutes of phone calls, we called MUSC back and told them to put Rebekah on Monday's schedule (December 12).  This involves no small effort as plans for the boys, packing, school (both for the boys and for Drew), and last minute details all have to be rearranged in a matter of a few hours.  Things that we had four or five days to finish up now have to be done in four or five hours.  In all honesty, I can't believe I'm as calm as I am right now.  Either the panic hasn't set in yet, or I'm in complete denial! :)

We have a lot of things that need to happen today just to make this work, so I'm going to list a few specific prayer requests for today.  First, pray for Drew's parents.  They, too, are rearranging their schedules since they keeping the boys for us and we are using their car to go to Charleston.  Drew's mom is on her way here, and soon after she gets here, Rebekah and I will leave.  That brings me to my next point.  I really don't like driving at night, and it looks like a good portion of my trip this time will be at night.  Please pray for safety for Rebekah and I as we travel.  Also, Drew had already rescheduled some of his exams for today (technically his exam week begins on Monday 12/12), but he was planning on taking the remaining two exams on Monday morning, so those will also need to be rescheduled for tomorrow or Saturday.  As soon as those exams are done and he gets things wrapped up at home, he will join us in Charleston.  Please also be in prayer for our boys.  For weeks they have known that Rebekah will have surgery, and we had gone over the plan with them.  We had also planned to do a few special things this weekend that are obviously not going to happen now.  They are in a bit of shock that I will be leaving in just a few hours.

Once Rebekah and I get to Charleston, things will slow down.  She needs to be at the hospital at 9:00 tomorrow morning for pre-op, and we will probably be there till 4 or 5 in the afternoon.  Rebekah will have x-rays, bloodwork, an echo, possibly a sedated echo, possibly a CT scan or angiogram, and I can't remember what else.  Pray that all goes well tomorrow.  Saturday and Sunday we are just going to hang out in Charleston and rest.  I should find out tomorrow what time we have to be at the hospital on Monday, but I'm sure it will be early.

That's all I can think of for now.  I will try to update later tonight when Rebekah and I get to Charleston.  Thank you for praying for Rebekah and our family!

Nancy

Two Weeks

Two weeks is....

a long time yet

such a short time 

to get ready to

place my baby

in the hands of 

an incredibly skilled surgeon

his "A Team"

and most importantly

the Hands of God.

One Month

Well, as much as I have tried to not think about it, I have to admit to myself that Rebekah's surgery is really right around the corner.  One month from today, to be exact.  I've tried hard not to think "next month at this time we will be driving to Charleston," or "next month on this day we will be at MUSC for pre-op all day."  We both know that Rebekah needs to have this surgery, but knowing and doing are two completely different things.  It is never easy to take your child to the hospital for any type of surgery, but knowing that the outcome of this particular surgery is so questionable is difficult this time around.

Drew was finally able to catch Rebekah singing "Jesus Loves Me."

Then she promptly follows the song with an important announcement.  :)

Dr. Bradley warned me that his will be a longer and more complicated surgery than Rebekah has had before. They will have to cut through a large amount of scar tissue to get to the collateral that connects Rebekah's right sub-clavian artery to her right lung.  Dr. Bradley said it would be similar to chiseling a vein out of concrete - very long and very tedious.  The scariest part in the procedure is that they will have to partially or completely collapse Rebekah's right lung in order to reach the collateral.  Dr. Bradley is concerned about what effect that might have on the already high pressures in Rebekah's left lung.  If the pressures go to high, they will have to start Rebekah on nitric oxide to relax her heart and left lung.  There would be an increase in recovery time if she continued to need the nitric oxide.  We are really praying that she responds well to the collapse of her right lung so we don't need to face this option.

Dr. Bradley also said that Rebekah has "hundreds, if not thousands" of collaterals branching from her aortic system and leading to her right lung.  According to Dr. Bradley and Dr. L (our Greenville cardiologist), these collaterals range in size from microscopic to medium-size. The "medium-size" is the one that Dr. Bradley is going to try to connect to Rebekah's pulmonary artery.  Each of these little collaterals by themselves is no big deal, but the effect is staggering on Rebekah's heart.  Her heart is pumping blood through all of those little collaterals to her right lung, when it should be pumping that blood out to her body.  Dr. Bradley believes this is the main reason that Rebekah's left ventricle showed some enlargement on the last echo.  The plan is to coil off (block) the biggest handful (dozen or so) of these collaterals each time Rebekah has a heart catheterization, but we were told that, in effect, it will be like being covered in fire ants and picking them off one at a time with a pair of tweezers.  One fire ant is no big deal, but hundreds of them can be deadly.  We are really hopeful that this medium-sized collateral will provide some relief to Rebekah's tired heart, but in reality, it just may not be enough.  Please pray with us that this surgery will be successful and that this collateral will continue to grow and take on more and more pulmonary blood flow.

Rebekah and Mommy went to a friend's baby shower. 

It was fun to dress up and do something "girly!"

We truly, truly appreciate each one of you who has lifted Rebekah up in prayer. Your encouragement and love for our family has been such a blessing to us.  Please continue to pray with us.

Nancy

How You Can Help

Rebekah's surgeon, Dr. B., called at the end of last week to discuss his thoughts on the surgery that has been proposed for Rebekah.  It was a long, intense conversation, and the bottom line is that Rebekah needs some type of intervention.  Her heart is beginning to enlarge, and that puts her on a course that none of us want to see. As far as the doctors involved can tell, there is only one option available:  the surgery to attempt connecting the large collateral artery branching off her right subclavian artery to her pulmonary artery to create some pulmonary blood flow to her right lung.  There are pros and cons to this surgery, and it is bordering on experimental.  No one has ever had Rebekah's anatomy, so this is an "educated-guess" type surgery to hopefully give Rebekah's heart some relief.  If it does not work, we are basically out of options.

We are still waiting for the surgeon's office to finalize a date, but it looks like the surgery will be taking place about a week before Christmas.  Many of you have asked for specific ways that you can help, so I thought I would try to list some things that would be helpful to our family.

First, and most importantly, please hold us up in prayer!  This surgery will be long and intense, and we are told the recovery will be harder than any of Rebekah's previous surgeries.  Please begin to pray for Dr. B and the cardiology team as they prepare for Rebekah's surgery.  We are praying specifically for wisdom for Dr. B as he will be setting a course for proceeding as he is in surgery.  There are no surgical notes from a previous procedure that he can consult to give him an idea of how to proceed.

Also, please pray for our family's health.  The next few weeks are so, so important for keeping Rebekah healthy.  Any sickness or decline in Rebekah's health has the potential for creating more complications and a longer recovery period.  Please pray for Drew and I and the boys to remain healthy, as well, so we don't pass anything to Rebekah.

As you can imagine, this surgery and recovery time in Charleston will not be without expense.  If you feel led, there are several ways to help that would be a huge encouragement to us.

1) Ride for Mike 2011: Jonathan will be riding from Greenville to Charleston in honor of Rebekah Grace in just two!! weeks!  We are so excited to see how God is blessing Jonathan's project and using it to provide funds for Rebekah's needs.  Ride for Mike is partnering with Helping Hands Ministries to distribute all funds received for specific needs.  These funds will be used for the "big" things such as a hotel and/or bills that will need to be paid.
2) Restaurant Gift Cards: As you might imagine, cafeteria food can get very old, very quickly!!  There is very little opportunity to make or keep our own purchased food anywhere at the hospital, so we have to purchase almost every meal.  Some of the restaurants in the hospital or nearby are Subway (lunches!!), Olive Garden, On the Border, Longhorn, O'Charley's, Moe's, Applebee's and McDonald's.
3) Gift Cards: Generic gift cards (such as Visa gift cards) or Wal-mart or Target gift cards are also very helpful for smaller expenses such as gas and things that Rebekah needs.  We have found in the past that no matter how many things we try to pack and think of before we leave, there is always something that we learn in the hospital that would make things easier/more comfortable for Rebekah.  It is nice to be able to run to the store to get those little things that are a comfort for her.

Another blog friend of mine recently posted about some wonderful ways to help those who have a medically fragile child.  If you have a few minutes to spare, read through Kate's post here.  She very neatly sums up the answers to our most frequently asked questions.  :)

Thank you all for praying for us.  I will be posting more details about what Rebekah's surgery will involve when I can think more coherently.  Right now I'm going to do a little reading and hopefully get some sleep.  Rebekah has been restless the last couple of nights, so I'm hoping to get a little more sleep in tonight!

Nancy

More questions than answers

 Well, we finally heard from MUSC today.....and it was not at all what we expected!  Please forgive me if this post seems disjointed and doesn't make a lot of sense.  Drew and I are still trying to sort through information right now.  If you have a lot of questions after reading this post, it's okay; we have a lot of questions, too!  :)

Rebekah (2), Caleb (3), Aaron (5), Justin (8), Zachary (9)

So, before I get into all the details, I'll give a quick update on yesterday's cardiology and GI visits.  Rebekah was a very good girl this month and actually gained almost a pound!!!! Can I say we are thrilled and excited to see so much weight gain after months of barely gaining ounces?!  I think we can directly attribute the weight gain to the additional amount of overnight feeds Rebekah has received in the last four weeks.  Whatever the cause, we are grateful for it!

The cardiology visit was pretty uneventful.  Rebekah rested beautifully during her echo and was an absolute angel.  I am so thankful that she is such a sweet girl (most of the time!).  I can't imagine having to take an uncooperative toddler into doctor's appointments, echos, x-rays and labs.  I know some of you moms do it, and I have the utmost respect for you!  The only slight change is that Rebekah's left ventricle is enlarged from the previous echo.  This is an indication that her heart is working much harder than it should be, and is consistent with the theory that she is shunting blood through her right lung that is just basically looping from her heart to lung back to heart without ever getting out to her body.  That makes her heart pump twice as much to get the correct amount of blood flow to the rest of her body.  It makes me tired thinking about it!

These are some of my favorite pictures of Rebekah.

 I especially love the black and white, in spite of the fact that 

Rebekah dumped a pail of water on her shirt.  :)

While we were in the cardiology office yesterday, Dr. L sent Rebekah's surgeon an email and copied the cath doctor asking why we haven't heard from MUSC about a surgery date yet.  Dr. L called me (early!) this morning, and this is where the story gets interesting.....

Dr. L received two emails this morning regarding Rebekah's surgery.  The first, from the cath doctor said that they had presented Rebekah's case at conference (in early September, which we knew about), and they had sent a request to the surgeon for a surgery date.  The second email was from Rebekah's surgeon, Dr. B.  He said the reason we have not yet received a surgery date is that he is unsure that this particular surgery is the best option for Rebekah. What??!!  So the last two months that we have been waiting under the assumption that Rebekah would be having surgery to disconnect a collateral artery from her right subclavian and reattach it to her pulmonary artery, and I find out in about 5 seconds that our surgeon is not on board with this plan!  I could definitely hear the displeasure in Dr. L's voice (believe me, he is a very soft-spoken, mild-mannered man), and I know he was not happy.  He, also, had been given information indicating that we were proceeding with surgery and were simply waiting to be put on the surgery schedule.

Dr. B (surgeon) asked Dr. L to let us know that he would be calling sometime this week in order to discuss his thoughts on this surgery and share his concerns.  And, I hope, answer some of our questions!  I know one of the reasons that Dr. B has some concerns is that it appears this collateral is not as straightforward as we had been led to believe.  Apparently, this collateral makes some unique twists and turns through Rebekah's body before it actually winds up in Rebekah's lung in what Dr. B calls "a confusing nest of collaterals."  One of the possibilities that Dr. L is pretty certain Dr. B will suggest is a second opinion with another group of heart specialists for a "fresh set of eyes and opinions."

Really we need to speak to Dr. B and get some more information and direction from him before we proceed with any kind of treatments or procedures.  There are some medications that Rebekah could take to improve her heart function, and there are some very tiny collaterals (that will never be able to be attached to her right lung) that could be coiled off in the cath lab.  All of those treatments, however, would be skirting around the elephant in the room - that collateral branching off the subclavian.

So, where do we go from here?  I have no idea! :)  It's hard to discuss your daughter with such very intelligent doctors and hear them say "we really don't have any answers."  But, I am thankful that we know the One who does know the answers.  God himself created our little girl, and her unique anatomy is no surprise to Him!

Thank you all for the comments, prayers and hugs today.  We really needed them!  Please continue to earnestly pray for wisdom for all those involved in Rebekah's care.  Also, if you feel led, please consider donating to Ride for Mike 2011.  All proceeds are tax-deductible and will be used for Rebekah's care and expenses.  And please remember to join us in Traveler's Rest on Saturday, October 22 for the Ride for Mike Family Ride and picnic.  We would love to see you there!

Nancy

A Little Update

I've been putting off a blog post in hopes that I would have surgery date to give you, but I've given up. I'm posting anyway, and maybe we will have a surgery date by October. Maybe. :)

I don't really know why it is taking so long this time for MUSC to schedule a date for Rebekah. We know that her case has been presented at conference (several weeks ago), and we know that the doctors have decided to proceed with the surgery. So why the wait? The best guess I can come up with is that she is just not a priority case right now. Yes, the surgery needs to happen, but from a medical standpoint, it really doesn't matter if it happens this week or three months from now. I guess we'll know the date when they call us, and no amount of fretting over it is going to make them call us any faster. :)

In other news, Rebekah is talking a mile a minute! :) She truly is our little parrot and will attempt to repeat almost anything she hears. It's quite comical to hear her repeat random words or phrases that her brothers have said. Her favorites seem to be singing Jesus Loves Me and Deep and Wide. She says "song" and touches my lips to let me know that she wants me to sing her songs with her.

Rebekah is playing with "hats."

Rebekah has had great sessions at physical therapy the last two weeks. This week she was stepping up and down from a little four-inch platform with almost no assistance at all! Rebekah's PT mentioned that if Rebekah does this well again at her next PT session that we will probably go back to an every-other-week schedule. That would make this Mommy very happy!! :)

Justin and Bekah are almost inseparable.

I am sitting here trying to think of other Rebekah "news" to share, and I'm honestly drawing a blank! After two years of medical crises, delayed development and more than her share of colds and sickness, Rebekah is just being a normal two-year-old! We are certainly enjoying this period of "normal" right now and will continue to enjoy it for as long as it lasts. :) We are so thankful that the Lord has blessed Rebekah with several months of good health. She is still sleeping a lot more than a "normal" two year old, but that is going to continue at least until surgery and may always be a problem that Rebekah struggles with.

Lookout, Brothers! There's a new sheriff in town!

This will be Rebekah's first RSV season without the RSV vaccine. The vaccines are only given until the age of two, since RSV is usually worse for young children. However, we are concerned since Rebekah's anatomy is very different from that of other two-year-olds. I'm not sure what will happen if Rebekah gets RSV. Most certainly it would be a hospital admission. I'm afraid it would be a struggle for her to keep her oxygen saturation up in her normal range. Please pray with us that Rebekah does not come down with RSV this season!

In case you missed the previous post, you are all invited to join us for the Ride for Mike Family Ride on Saturday, October 22. The ride starts at 8:00 at Cleveland Park in downtown Greenville and ends with a picnic lunch at 11:00 at Gateway Park in Traveler's Rest. There is no charge for the picnic or the ride, but we do need a count of how many will be attending. If you would like to come, please feel free to email Jonathan or leave a comment below with the number in your party. Also, Jonathan has set up a tax-deductible fund for those who are interested in giving to Ride for Mike 2011. All proceeds will be disbursed through Helping Hands Ministries and will be used for expenses directly related to Rebekah's care, especially with her upcoming surgery. You can find instructions for giving to Rebekah's project by clicking the Ride for Mike link on the top left sidebar of the blog, or go directly to the Ride for Mike 2011 donation page.

Thank you all for your support and prayers.

Nancy

Quick Surgery update

We heard from Dr. L today. The team at MUSC met yesterday and discussed Rebekah and her current test results. They have confirmed Dr. B's recommendations from heart Cath. Rebekah is going to have surgery to try and connect her non-working lung. We do not have a date yet. We should be talking with MUSC sometime next week about a surgery date.

D

Catheterization Recap

Wow! What a day! Overall, we are thrilled with Rebekah's cath and so pleased with what Dr. Baker was able to do. He found two narrowed areas, one at each end of Rebekah's left pulmonary artery (LPA). (The conduit that was put in during the Truncus Repair is functioning as Rebekah's pulmonary artery. Her left pulmonary attaches to her left lung at one end and attaches to the conduit at the other end. She is missing her right pulmonary artery.) The narrowing at the lung end of the LPA is a narrowing of tissue, and Dr. Baker was able to balloon that open a bit more. The narrowing at the conduit end of the LPA is a narrowing in the muscle of the heart itself. That cannot be ballooned or stent-ed (is that a word??). In order to expand the LPA on the heart end of the conduit, Rebekah will need open heart surgery. To further complicate matters, the location of the LPA on the conduit is very, very near to Rebekah's graft valve that is functioning wonderfully right now. Potentially, any surgery on the heart muscle in that location has the possibility of damaging that valve and causing it to leak. With Rebekah's already high pressures, that would be very, very bad.

SO....do we have a plan yet? Well, tentatively we do. Dr. Baker (cath doctor) would like to see Rebekah make it another six months (at minimum) with the ballooning and an additional medication. The pressures in Rebekah's heart are still high, and while the ballooning was good, it did not resolve the problem. The bottom line is that Rebekah WILL need open heart surgery sometime within the next year. The exact timing of that surgery will largely depend upon how the new medication works in lowering her pulmonary hypertension, and how long her heart tolerates the added stress and continues to remain "happy."

Dr. Baker believes (and so do we!) that Rebekah's case is too complex for his decision alone. Sometime in the next week or two, he will be presenting Rebekah at conference. This is a meeting of all of the cardiac docs, the cath docs, Dr. Bradley and his partner (I can't remember his name), and anyone else directly involved in the management of these heart babies. That is why I say the plan we have right now is tentative. After reviewing the results of the cath lab, Dr. Bradley could make changes, opt for an earlier surgery date, or change the plan altogether. If there are any changes made, we should hear about them in a couple of weeks.

As for the medication that Rebekah will be taking, it is Sildenafil, a drug originally marketed for reducing pulmonary arterial hypertension (exactly what Rebekah has!). Most of you will recognize the drug by the name Viagra, marketed for something completely different. There are relatively few side-effects, and a relatively low occurrence of those side-effects when used as originally intended. As Dr. Baker said, when playing in this game, the question is not, "Does it have side-effects?" but rather "Do the benefits outweigh any potential risks/side effects?" The cardiologists believe that in Rebekah's particular case, the Sildenafil has a good chance of lowering Rebekah's hypertension enough to buy us a few more months before she will need surgery again.

As of tonight, Rebekah is still fighting fevers. She was fever-free this morning, and remained fever-free during her cath. However, she flirted with a low-grade fever off and on in the recovery unit, and her fever began climbing again around 8:00 this evening. Rebekah's nurse, Christie, checked her temperature a little while ago, and it was 101.9 after Rebekah had been given Tylenol just a little over an hour earlier. This is definitely not the trend we want to see! A low-grade fever could be attributed to teething, but we are getting high enough that there is concern that something else might be going on. We would love to blame the fever on anesthesia; after all, Rebekah ran fevers for a week after her last open heart surgery. However, the fact remains that Rebekah had a fever last night prior to her admission. We are currently waiting for the attending to give us some input and direction. It is possible that they may draw labs, test for flu, and/or give another dose of antibiotics as an immune system booster. I am praying that Rebekah rests well tonight, despite the fever. She was up frequently last night, and so were we!

So, please keep us all in prayer tonight and tomorrow. Obviously, we would like to get back home tomorrow, but not if Rebekah still needs to be here. The last thing we want to do is go home tomorrow and have Rebekah's temperature shoot up and be sent back in "emergency" status. Please pray for wisdom for the doctors so they will be able to figure out what is going on.

Nancy

P. S. In case you missed it earlier today, click here to read Rebekah's ice cream post. It's a real treat! :)

Update

The good news is......Rebekah has started to pee!!!!! It is with the help of some heavy-duty doses of diuretics, but at least she is getting some of the fluid out of her body. We are very excited that she is responding to the medications finally.

As far as the pressures go, Rebekah's LAP and RAP have come down considerably. She has been hanging out in the 15-17 range except when she moves or wakes up when the numbers shoot up to 30+. The PAP (measures the pressures in her new conduit) has still remained high, at times only 3 or 4 points above the systemic pressure. We are still in the post-operative waiting period, though, and the doctors want to wait and see how her heart is doing over the next couple of days before attempting any other interventions.

Rebekah's oxygen saturations have dipped a little lower today, but still much higher than we are used to seeing them. :) Mostly today they have been hanging in the 95-97 range. Rebekah's heart rate has been very steady all day, and her nurse told me that is a good indication that her heart is doing well and there is no bleeding inside her heart.

The goals for Rebekah overnight are to rest calmly, continue to get rid of more fluid and rest calmly. :) For the last few hours, Rebekah has been resting much better. We hope that trend continues overnight.

We enjoyed spending time with Danny and Kelsey Rowan today. They drove down from Greenville to see Rebekah and bring her an adorable teddy bear. It was nice to visit and have some adult talk that didn't completely revolve around medical terms. :) Thanks, Danny and Kelsey, for giving up your Saturday to come and see us!

Please continue to pray for Rebekah tonight. She is stable, but still has a lot of recovery ahead of her. Also, please keep two other families here in the PCICU in prayer. Their little ones are not doing as well, and I am sure that they would appreciate your prayers.

Due to the other issues going on in the PCICU, and a very sick baby in the PICU as well, the doctors have not officially rounded yet tonight. Drew and I were hoping to talk with Dr. Graham about Rebekah's heart function and the time line that he has in mind for monitoring the pressures. It could be quite late when he is available, so we'll see how long we can stay up. We may wait until tomorrow if it gets too late.

Nancy

Good Morning!

Thank you all so much for your prayers, emails, comments and texts! Drew and I were able to get some much-needed sleep last night. I fell into bed around 10:30, and I heard nothing until about 7:30 this morning. It was wonderful!!

Rebekah, on the other hand, did not sleep so soundly last night. Her nurse said she tossed and turned through the night. They have not been able to come up with an effective cocktail of drugs to keep her sedated. She is on a morphine drip, IV injections of Versed and morphine in between, and they also added in Precedex. All of that, and she still had a restless night! Our little girl is a fighter! The doctors would still like her to be sedated throughout most of today to let her heart and body heal from the surgery. Also, all of that moving and thrashing has the potential to rip out tubing, IV's, pacing wires and chest tubes, not to mention the ventilator. So, if you would like to pray specifically, please pray that Rebekah can rest peacefully. I'm sure her nurse would thank you for those prayers. :)

We were able to talk with Dr. Graham (one of our favorites!!) before we left the hospital last night. He said the pressures on the right side of Rebekah's heart were disappointing, but they are going to hold off a few days to see if her heart begins to lower the pressure on its own before doing any more interventions. Basically, Dr. Graham gave us three potential outcomes.

1) The pressures in Rebekah's heart come down on their own and no intervention is needed. (Best case scenario)
2) The pressures in Rebekah's heart remain high, but her heart tolerates the increased pressure for a few months (with or without medication), and in a few months we come back for a heart catheterization to measure the pressures and make adjustments as necessary. (Not the best, but certainly not a bad option)
3) The pressures in Rebekah's heart remain high, and her heart begins to tire and doesn't want to keep pumping against that much pressure.....also known as heart failure. In this scenario, we would have to intervene immediately. Hopefully a procedure could be done in the cath lab, but there is a possibility of another trip to the OR if the pressures cannot be lowered by a cath procedure. (Worst case scenario)

As of last night, Rebekah actually had three different pressures that were high. The most concerning is the PAP (pulmonary artery pressure). She has never had this measurement before, because she did not have a pulmonary artery before yesterday's surgery. This measurement is a measure of the pressure that is in the new conduit taking blood from the right side of her heart into her left lung. Normal PAP pressure is about 1/3 of systolic blood pressure (the top number on a normal blood pressure reading you might have at the doctor's office). Rebekah's systolic pressures yesterday were in the mid 70's to high 80's. Her PAP was in the high 60's to mid 70's. As you can see, it is significantly higher than normal, and too high even for Rebekah's anatomy. The doctors would like to see it at least as low as half of the systolic number. So we are looking for numbers that are somewhere in the upper 30's to mid 40's. Based on a bedside echocardiogram that Dr. Bradley did yesterday, he feels that for some reason this conduit is beginning to narrow. Not good! This conduit is the passage way for an amount of blood that is already too large for the space that it is flowing to. That in itself is enough to create higher pressures, which Dr. Bradley had warned us about on Tuesday. If that conduit narrows, it becomes an even smaller space for that blood to flow through. I think this is one of Dr. Graham's more pressing concerns. If that conduit continues to narrow, or the pressures continue to remain as high as they are, or higher, we got the impression that Rebekah would be headed to the cath lab in the next few days for them to try to balloon that conduit open.

The other two pressures that are high are the LAP (left atrial pressure) and RAP (right atrial pressure). These pressures are a measure of the pressure in the top two chambers of Rebekah's heart. You know, the chambers which now have a hole between them to try to equalize some of the pressure building on the right side of Rebekah's heart. I'm not really sure what the plan is for correcting, or lowering, that pressure, except that the doctors are going to give it a few days and see if that pressure drops as the heart heals. Normal readings for those pressures would be high single digits (8 or 9). Normal post-op readings would be as high as the low teens. We saw Rebekah's pressures as high as the low 20's last night before we left.

Other than those numbers, everything else looks great! Rebekah's oxygen saturations are reading between 97 and 99%; those are numbers we have never seen! When she came in for surgery, her sats were between 75 and 80% on half a liter of oxygen, so we are very excited to see "normal" saturations!

That's about all for right now. I'm sure we will have more information to share as the day progresses, but I just wanted to get a quick post to update you on where we are right now. Thanks for praying!!

Nancy