Tuesday Night

Well, what's a recovery without a few bumps in the road?  :)  Honestly, Rebekah is doing so, so well for having been out of surgery for only 30+ hours.  She is having a few little "bumps," but all of them are totally normal, and we really expected them.

First, Rebekah has been running a fever off and on throughout the day.  It is pretty normal for a fever to follow anesthesia, and so far it has not been a high fever.  Next, Rebekah's digestive system still hasn't woken up from the anesthesia.  We were very excited that Rebekah was drinking apple juice today, and it is a good thing.  BUT, the juice went to her stomach and stayed there.  Rebekah had trouble all day with retching and gagging, so  around 4:00 this afternoon I asked Rebekah's nurse to check her stomach contents.  She pulled out (through Rebekah's g-tube) all of the apple juice that Rebekah had during the day.  We realized that Rebekah's poor stomach was so full that it was causing her to be very nauseated.

Soooo, Rebekah is on a restricted diet at the moment.  They are going to let her have small sips of water or juice, but only very, very small sips mainly just to coat her sore throat.  They are also going to run feeds overnight, but it will be Pedialyte at 5mls/hour.  The nurses will be checking stomach contents every few hours to make sure that Rebekah's belly is not filling up and causing her discomfort.

Also, Rebekah is retaining fluids a little bit, so she was started on a second diuretic this afternoon.  She usually takes Lasix on a daily basis, but they have added Diurel to the Lasix to try to get her to output some fluid.  Because of the fluid retention, Rebekah's lungs are having to work a bit harder.  This afternoon her sats were dipping a little below her normal.  We are hoping that will resolve once she loses some fluid.

All in all, we are still very, very pleased with where Rebekah is right now.  These little bumps are completely expected and are very mild in terms of what she could be facing right now.  Thank you again for your prayers for our baby girl!

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

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