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

Sleeping Beauty

We came into the PCICU this morning to find a nice surprise - Rebekah had been extubated during the night and was back on her home level of oxygen!!  This is terrific news!  We are thrilled that she is doing so well!

Naturally, Rebekah is still very heavily medicated, so she is mostly sleeping.  Every once in a while she kind of flutters her eyes open and stares at us, and then goes right back to sleep.  Can't blame her!  I would be sleeping, too!!  :)

Rebekah did surprise us by briefly sitting up all on her own.  She didn't have any idea what she was doing, and I really think it was more reflexive than anything.  But it send us all scrambling to catch IV's and tubing before she unintentionally pulled lines out herself.  She always has to do something to keep us on our toes!  :)

Rebekah has also been alert enough to drink some apple juice.  She's had about a carton and a half over the course of the last few hours.  She takes it a few sips at a time, but it's a great start!

Her throat and voice are very rough from the ventilator, so she hasn't really started to talk yet.  She sort of half-whispered "juice" to Drew once, but other than that she is sticking to sign language or nodding her head.  She has answered a few yes/no questions for us by shaking her head appropriately.

Rebekah does know that Mommy and Daddy are here.  Her nurse said that she woke up this morning (before we got here) and was very calm - no crying or anxiety.  It doesn't surprise me.  This is her home away from home!  :)

This is Rebekah's one and only "awake" picture since surgery.  Even though she had her eyes somewhat open in the other pictures, you can tell she's still really medicated.  She is really medicated in this picture, too, but she was a little more awake.  She let me wash her face a little bit and she took a few sips of juice before she went back to sleep.

That's about all the news right now.  We're enjoying Rebekah's smooth recovery so far and praying it continues!!

Nancy


P.S.  Just as I "published" this post, Dr. Bradley came by.  He said he is very pleased with Rebekah's progress at this point and that she is doing as well as he could have imagined post-surgery.  We asked about meds and oxygen after going home, and Dr. Bradley was cautious about his answer.  He said his leaning would be to get Rebekah off anything and everything that they can't prove has very specific benefits.  But, he did say that the other doctors, and especially Dr. Lucas, would weigh in on their thoughts and opinions before any final decision would be made.

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