The next post.....

.....will be from somewhere other than our hospital room!!!  We are packing up and getting ready to move out!  :)

Please pray for safety for Rebekah and I as we head to Greenville.  I am thankful that it looks like we will be leaving soon enough to get there before dark, or shortly after.  If you remember from our trip down here, I do NOT like driving in the dark.  So if you would pray that the remainder of the discharge paperwork and things that need to be completed will be done quickly, I would appreciate it!

Rebekah has spent the entire morning hanging out at the nurse's desk.  She loves her new friends as long as they don't have gloves or a medicine syringe in their hands!!  :)

See you later from our happy abode (I refuse to say the word, for fear that something will crop up at the last minute!!!  :)

Nancy

Feeling Better!

I can tell Rebekah is certainly beginning to feel better!  She wants to be out of the bed and socializing with everyone!  Since Rebekah is not plugged in to oxygen right now, she loved the freedom of following the nurses around the unit.  She spent the better part of an hour hanging out at the nurses station tonight charming all of the nurses. :)  The unit has a new telemetry system (monitors heart rate and oxygen saturations) that is wireless, so the kids just have a small white box with the leads attached to it, instead of being confined to a bed with a monitor beside them.  It's great for the kids!!  Rebekah picks up her box and away she goes! :)

The theme of the day was giraffe.  :)  Yes, it totally all matches, and yes, I have a blast dressing Rebekah!  I'm already mourning the fact that by the time Rebekah has another surgery, she will be too big to wear the cute onsies and leg warmers. So sad!

Rebekah is totally in love with Mickey Mouse right now.  Do you know how many stores do NOT carry Mickey Mouse??!!  I searched through Walmart, Target and an entire mall (with no Disney store) before I finally found this Mickey at KMart.  Rebekah has been best buddies with him ever since. :)  I figured if a girl goes through open heart surgery, the least she can have is a Mickey Mouse!

We had a nice surprise today - MAIL!!  Rebekah received two cards and a package today, and she was delighted!  She very meticulously studied the cards and looked at all the pictures on them.  It was really sweet.  She also very much enjoyed the new book she received, and spent a lot of time looking at the pictures after we read it.  Thank you for the enjoyable surprise!

Tomorrow morning Rebekah will be having another chest x-ray.  I'm really hoping to see some good results from this one!  As of this morning's x-ray (at 6:30 in the morning!!), there was still a large area of fluid on Rebekah's right lung and a small collapsed area in Rebekah's left lung.  Both are no worse than they were before, but they don't seem to be much improved from two days ago.  The good news is that Rebekah is handling it well since she was able to go without oxygen all day and keep her sats up!

Rebekah finally settled down and went to sleep.  :)  I told you she was feeling better!  She's starting to play her "stay-up-till-midnight-and-sleep-all-day" hospital routine.  Better get out of here fast, or she's going to have a serious adjustment when we get back home.  :)

As you pray for Rebekah, please continue praying for baby Jackson.  He had his best day ever on Sunday, and I know his parents needed that bit of encouragement.  His battle is far from over, so please remember him in prayer.  And we have another little heart buddy named Jude who also needs prayer.  He has a big test tomorrow to see if he can make it off of the heart/lung bypass machine.  If he is strong enough, then he will be scheduled for his first open heart surgery a day or two later.  His parents would also appreciate your prayers.

Nancy

Saturday!

I am happy to say that Rebekah seems to be feeling better today!  :)  Or at the very least she is tired of laying in her bed and wants to be up and doing things.  She was wide awake shortly before 7:00 this morning, and we started the day with a bath and beauty treatment.  :)  Bekah wasn't crazy about taking some of the stickies off in the bath, but she seemed to relax and enjoyed having her hair washed. 

Some of you may remember from one of my posts a few days ago that Rebekah's voice has been very soft and whispery since surgery.  The first couple of days, we just assumed that it was a hoarse throat from having the breathing tube in.  After several days passed, though, we became concerned that something more might be wrong.  We talked to Dr. Bradley about it Thursday night, and he referred Rebekah for an ENT consult.  The consult didn't happen until late last evening.  We really liked the ENT that we met with last night, and he listened to our concerns about Rebekah and then decided to do a scope of Rebekah's airways to see if there was anything going on.

As it turns out, Rebekah's left vocal cord was paralyzed at some point during surgery.  It possibly has been stretched, or it could have been severed.  The nerves around the voice box go down into the chest on one side and go back up on the other side.  Time will tell whether or not the paralysis is permanent, but Dr. Bradley told us that is one of the areas that he was working in.  As careful as he is, one of the risks of open heart/open chest surgery is damage to the vocal cords.  For now we watch and wait to see what happen.  Her voice could come back in a matter of a few weeks to a few months.  If not, then the damage is permanent and we will discuss options for restoring her voice at that point.

One of the struggles we are already having with Rebekah's vocal cord loss is communication.  She can and does speak, but it is very, very soft and some sounds are just lost.  It has been a source of some frustration here in the hospital in a relatively quite room.  I think our whole family is going to have to work extra hard to make a point to listen to Rebekah.

Another complication of Rebekah's vocal cord is her swallow.  Because the nerves control the vocal cords and swallowing, there is a serious risk of aspiration.  Rebekah has been given the "okay" to have purees and solids, but nothing thinner until she has a swallow study on Monday.  So, no liquids at all for the weekend for sure.  On Monday we will find out if Rebekah can have normal liquids, or if she can have thickened liquids, or if she will not be able to have liquids at all.  It has been a rough day already since Rebekah wants to have a drink with her meals or during the day.  To make up for the lack of fluids, we are giving Rebekah three bolus feeds of Pedialyte during the day.  We will find out on Monday if we need to continue that at home, or if Rebekah will be cleared for liquids.

Rebekah has still been in a fair amount of pain today, despite the fact that we have continued her pain medications.  She is also scratching her incision relentlessly.  She has been getting Benadryl as often as she can have it, but she still managed to scratch off the top half of her steri-strips covering her incision.  Bek's nurse had to come in and re-bandage Rebekah's incision.  We can't keep up with what that girl will think of next!

Look at who is up and walking!!  :)  Rebekah has wanted to "go bye-bye" off and on today.  So, a couple of times today we took walks up and down the hall.  Understandably Rebekah is still a little unsteady on her feet, but we are thrilled that she is doing this well!

Rebekah has another chest x-ray ordered for tomorrow morning.  The x-ray she had early this afternoon still looked "wet," so there is some fluid that she still needs to get off her lungs.  Sitting up, moving around, walking, all of these things will help Rebekah get the extra fluid off.  Also, she is still on an increased dose of Lasix three times a day.

So today has been a little rougher as we've had to deal with some of these little complications, but overall Rebekah is still doing so well.  We are so thankful that God has given Rebekah to our family!  I haven't heard any updates on baby Jackson today, but please continue to pray for Jackson and his family.

Nancy

Friday Update

The good news is that I finally got some pictures uploaded and posted.  The bad news is that Blogger put them in this post in random order, and I haven't been able to figure out how to rearrange them.  I know it's supposed to be all click-and-drag friendly, but right now Blogger isn't playing nice.  So enjoy the pictures and I'll try to give some explanations so they all make sense.  :)

Rebekah had a very special gift delivered to her on Tuesday from the Butcher family!  If you don't know them, Annabelle was a very special little girl who spent much of her time in the PCICU at MUSC.  She lived for only a few short months with a very broken heart.  As a way of remembering their sweet Annabelle, her parents began a program called Annabelle Baskets.  The baskets are given to babies who require open heart surgery to repair their heart defects.  Rebekah has been the recipient of two Annabelle Baskets, and this time she received a specially chosen package from Annabelle's family.  Rebecca, thank you so much for the thoughtful gifts you put together for Rebekah.  I know she doesn't look too happy in the picture, but you really found a lot of her favorites!  (The Hello Kitty pencils brought the first smile we'd seen since surgery!)  And the little bear sings "Jesus Loves Me."  It's Rebekah's favorite song!!  :)  So thank you again, Rebecca.  What a special surprise!

Let's see....I think this picture was Thursday night.  It was the first night Rebekah wanted me to hold her.  She still seems to be in a good deal of pain, and I feel like we spend our time chasing her pain instead of staying ahead of it.  We requested doses of Oxycodone, Tylenol and Benadryl (Rebekah has really been itchy around her incision.) before bed tonight, and Rebekah finally seems to be sleeping peacefully.  I asked her nurse to please give the pain meds when they are scheduled through the night instead of as-needed, so hopefully Rebekah will sleep all night!

This afternoon Rebekah felt well enough to go to the playroom.  Here it is called the Atrium.  She had a good time playing with some toys, then she asked to color.  We stayed for about an hour, and she did really well.  She was sitting on her own and playing with some toys, and she even stood and took a couple of steps with Drew's help.

I think this picture was Thursday morning. I love the legwarmers, and so does Rebekah!  She looks so cute in pink and gray!  :)  All of the lines you see in the picture are now out.  Rebekah was moved to the floor this morning, and she still had an IV in her left foot.  (The one in her right foot wouldn't flush last night, so they removed it.)  All day Rebekah has cried any time a nurse has used the IV in her foot.  This evening she got her nausea meds through that IV and just cried and cried and cried.  I asked the nurse if we could just take it out, since Rebekah was getting all of her other meds through her g-tube.  She called the on-call doctor, and he gave the green light.  It was a good think we took it out because it had infiltrated and left the top of her foot swollen!  No wonder the poor girl was in so much pain when anyone messed with it!  The swelling should ease overnight, and by morning she should be able to walk without any pain.

Bekah loves to play with Daddy's hats!  :)  Even though she isn't smiling a lot, we have had periods of play time today.  Rebekah and I play this silly game where we blink at each other and try to copy the blinks.  I know, it's a silly little game, but it entertains her.  :)  Anyway, she started it tonight on her own right before she fell asleep.  I love that she's starting to feel well enough to play a little!

This afternoon after Rebekah played in the atrium, she was taken downstairs for an echo and a chest x-ray.  We're assuming they both were fine since "no news is good news" when it comes to tests and labwork.  Rebekah was such a good girl for her echo, in spite of the fact that she was really tired after playing in the atrium and would rather have gone back to her room for a nap!

We borrowed a small stroller from the unit to take Rebekah to the atrium.  She isn't up to walking yet, and holding her for long periods of time is still uncomfortable for her.  The stroller was the perfect thing!  She enjoyed getting out for a little while.

Mommy and Bekah in the PCICU on Thursday night.  We stayed a little later than we normally do since we had to leave earlier in the evening when Jackson came back from the OR.  I saw Jackson's grandparents in the atrium this afternoon, and they said he is not doing well.  Please, please continue to pray for little Jackson and his family.

Rebekah loved playing with the Weeble Wobbles in the playroom.  She spent a good deal of time putting them on the little ferris wheel, sliding them down the slide, and just having fun.  She reluctantly shared some of them with another little heart friend who was also playing in the atrium.  :)

Mmmmm....strawberry ice cream!  So far it's the only thing Rebekah has eaten since surgery.  I can't say that I blame her! :)   She has also enjoyed some apple juice, but that's about all she has had orally.  We're not pushing her since she is getting her overnight feeds.

Rebekah is settled for the night, and I'm about to get some sleep while I can.  Thank you all for praying for our heart babies.  They are special little people!!

Nancy

Friday Morning Update

Rebekah had a great night last night resting and working on her overnight feeds. She was bright eyed and energetic when I came in this morning to see her. Shortly after I arrived, after hugs and saying hello. I found out that all had been cleared for Rebekah upstairs. So a little bit of packing and we were off for a morning trip.

We are now settled in on the floor of the step down unit. Home away from home. Rebekah has been pretty restless since we got up here. I think she was in a bit of pain so we asked for some pain meds and she is feeling better.

After sometime on Skype to say hi and play with her brothers and grandparents it is now time to settle in for long lazy afternoon nap.

We hope to have a quiet afternoon and evening. We will update again later this evening.

-D

Post-OP Day 3

It's amazing how much a little (or a lot!) sleep can help!! Rebekah looked totally different this morning when we came in to see her.  She was alert, responding to our questions, and looked much, much more comfortable this morning.  Her nurse said that she had slept comfortably all night and had not woken up until around 9:00 this morning.  Rebekah was awake for about 2 hours before she fell asleep for a little nap.  Sleep makes such a big difference!

Rebekah's chest x-ray this morning was definitely showing improvement from yesterday.  She still has pockets of atelectasis, but overall her lungs are much better.  Her oxygen sats confirm that because she is at her baseline normal sats today.  Yesterday her sats were hovering in the upper 80's/low 90's.

With the good echo Rebekah had last night, and the improving chest x-ray from this morning, Dr. Zyblewski gave the okay to remove Rebekah's IJ (intra-jugular) and arterial lines.  Those came out around 1:00 this afternoon, with only minimal bleeding.  So Rebekah is not on any more IV medications!! :)  She does have an IV in each foot just in case she needs some IV meds for some reason, but they are not being used right now.

Rebekah's feeds went much better overnight as well.  It looks like her belly is starting to wake up from the anesthesia, and the nurses were able to work Rebekah up to 15ml's/hour of Pedialyte overnight.  Tonight we are going to try running Pediasure (Rebekah's regular formula) beginning at 15ml's/hour and see how she does.  Hopefully her belly will tolerate the feeds with no nausea.

She is really doing so much better today.  She is actually playing peek-a-boo and smiling with Drew.  Yesterday she could barely move or open her eyes without whimpering.  The change is just amazing.

And the best news of the day is that Rebekah is moving to the floor!!!!  She has met all of the requirements to be kicked out of PCICU, and as soon as her room is ready she will be moving to 8D.  We are excited!! :)

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

HOME

We arrived home safe and sound this afternoon. Rebekah did great on the trip home and is resting well. We hope to get lots of rest in the next few days as things some what return to normal.

Thanks for all the prayers.

D

Home Again!

Thank you all so much for the prayers for Rebekah and our family during her heart catheterization. We left MUSC around 11:00 this morning and made it about halfway home before stopping for lunch. We made it home around 3:30. Rebekah slept from MUSC until we stopped for lunch, and she slept for about an hour after lunch. I think it was really good for her to be able to relax and get some much-needed sleep.

One thing that I realized I forgot to mention in last night's post is that the doctors recommended that Rebekah stay on her oxygen indefinitely. They firmly believe that the oxygen is doing some good, so tanks and tubes will remain in Rebekah's future.

As of bedtime tonight, Rebekah had not had another fever. We are hoping not to see any more!

Tomorrow Rebekah will be going to see her cardiologist for a check-up. As far as I know, she will also have an echo. Dr. Lucas likes to put his eyes on his heart patients when they come back from MUSC so he is familiar with how they look after a procedure. That way, if there are any problems that come up, he knows exactly how things looked when we got home.

Rebekah is on an every eight-hour schedule with her Sildanefil. We are going to try to make it 11p, 7a, and 3p. Any other schedule has me getting up in the middle of the night, or very early in the morning. We'll see how well it works.

Please pray for our safety tomorrow. We are supposed to get an insane amount of rain, leading to flooding conditions. That's the kind of weather I would rather watch from the comforts of our dry home! :) Also, please pray that Rebekah's fevers will remain gone!

Rebekah walking last week. She's getting much more stable!

Nancy

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 #4

Rebekah is out of the cath lab and back in recovery. We are about to go back to see her. Thank you all for praying! We'll be updating later as we have information/opportunity.

Nancy

Three weeks!

I hope all of you had a wonderful Thanksgiving holiday! We definitely enjoyed ours! It has been nice to have the boys have a few days off school, but it is time for them to go back. Too many days off makes for restless little boys! We did get most of the Christmas decorations up, so that kept us busy for several hours.

Rebekah is doing very well, and for that we are so thankful. She is slowly starting to come back to the little girl that we had before surgery, which means that she is moving around and getting into mischief! :) We are pleased that she is feeling well enough to get into things, so we're not complaining!

I love my Oreo cookies!!

You can see from these cookie pictures how well Rebekah's scar is healing. It is definitely more red than it was prior to surgery, but unless you compared before and after pictures, you probably would not have guessed that Rebekah had surgery three weeks ago. The two sites where Rebekah's chest tubes were are still pretty big scabs, but we are very thankful that they did not get infected. For a few days after we got home they were quite raw and open. We very diligently slathered them with antibiotic ointment and changed the dressings frequently. While she will definitely have some scarring, I'm glad that the areas are healing finally.

Hmmm....where did my cookie go?

On the outside of Rebekah's heart scar, the skin was literally glued back together with Dermabond. It will make for a much smaller, smoother scar than if there had been stitches on the outside. Underneath her skin, there is a running zig-zag stitch starting at the top and working down to the bottom. Dr. Bradley used a material that is dissolvable, so over time the stitches will disappear.

Mmmmm....that was good! May I have seconds??

Rebekah had a good check-up with our Greenville cardiologist. He said that echocardiograms are a very subjective measure of heart function, so he can't really tell us how the function of the right side of Rebekah's heart is doing compared to how it was in Charleston. He did feel, however, that the function of the right side was at least in the low-normal range. We are all hoping that the function will improve over time.

As far as Rebekah's pressure, it has come down some according to the echo. Again, the echo is not a perfect measure, but it at least would give us an idea if it was getting drastically higher. We certainly hope that the pressures are coming down as the echo has indicated. Dr. Lucas will continue to watch the pressure here, and we will get a true reading during Rebekah's heart catheterization in March.

Daddy and his little pumpkin!

One exciting piece of information that Dr. Lucas gave us is that he intends to wean Rebekah's lasix dose over the next few months. Rebekah has been on Lasix since birth, but Dr. Lucas feels that if she continues to keep the fluid off her heart and lungs, then he sees no reason to continue the medication. On Rebekah's next visit she will have another echo and a chest x-ray. If it all looks good, we will be dropping one of her two daily doses. We will continue giving Rebekah one dose of Lasix per day for a few months till we see how her body tolerates the missed doses. If all goes well, Rebekah could be off Lasix by spring!

I love my new music toy from Aunt Aimee!

Rebekah is making steady progress back to the physical activities she was doing prior to surgery. One of the best things has been this little music toy. Rebekah loves to be a big girl and sit on the bench by herself. She has been able to maintain fairly good balance for twenty or thirty minutes at a time. There are shapes that light up and play music when Rebekah pushes them. Rebekah loves music, so this is the perfect toy for her! Dr. Lucas felt that Rebekah's stander could put too much pressure on her chest, so we are holding off on that for now. Rebekah has been in her walker several times, though, and she is taking 5 or 6 steps with someone holding on to her waist for balance.

My dimples are finally back!

For now Dr. Lucas is holding off on resuming Rebekah's therapies. He wants to give her chest a little more time to heal so that therapy will not stress or hurt her. When Rebekah has her next appointment in December, he will re-evaluate therapy based on how well she is doing.

Rebekah's piano concerto!

I finally have my computer up and running now! I downloaded over 400 pictures for the month, and I am working on editing them. When I get them done, I am planning to post pictures from Rebekah's hospital stay in their chronological order. I will be sure to link to those pictures so that you can view them if you wish. We looked back at the pictures last night and were amazed at how far Rebekah has come in three weeks. Sometimes it seems like she is slow to make progress, or that she lost some skills during her hospitalization and has not yet gained them back, but the progress she has made is astounding. We have much to be thankful for this year!!

Nancy

Home Home Home

The 24 hour clock has run out and the verdict is we are going HOME. Mom and Rebekah are all packed and unplugged from the monitors. They just need to see one last Dr. on rounds then they will be free to head home.

We will have quite a surprise for the boys when they get home from school today.

Praise the Lord that Rebekah has done so well and that she is able to come home. Thank you to all of you who faithfully pray for her and our family. We can see God working and guiding us along this journey with Rebekah.

D

Maybe, Possibly.....

We might just be hearing whispers and rumors of home!! Rebekah has not had any fever at all today, so we are cautiously excited that she will continue that trend through the night and tomorrow. Overall, Rebekah is doing really well. She is more active, playing and in general ready to be out of the hospital! I, for one, will be elated to get out of the hospital and into a regular sleeping schedule! Hospitals are great when you need them, but they are an awful place to be when you aren't sick! :)

Rebekah was able to go to the Atrium today (the playroom). We had fun making a tie-died shirt with some volunteers that came today. Also, we played with some Little People and a wooden doll house. Rebekah had great fun dropping the toy doctor down the stairs. (Note: I don't think she had any clue that it was supposed to be a doctor, but I found it to be quite humorous!) After all of the excitement and playing, Rebekah has come back to the room and crashed. Maybe she will sleep well tonight!

This afternoon we went down to the radiology floor to have an ultrasound of the lump on the back of Rebekah's neck. Basically, the ultrasound tech and the radiologist have no idea what it is! The radiologist said that if Rebekah was two or three months old, she would have diagnosed it as a hemangioma, but Rebekah is beyond the typical age when hemagniomas develop. The ultrasound did define that it is not a tumor, or hard mass, as would be typical with a cancer. So, the plan is for us to keep an eye on it and when we come back in 3-4 months for Rebekah's heart catheterization, they will do another ultrasound if it has not gone away before then. Of course, if it begins to grow, becomes red, inflamed or any other changes, we will have it imaged again sooner.

Miss Boo is awake and ready for her dinner. I'm hoping to get her in bed fairly early so she can have a good night of sleep. We'll see how that goes! :)

Nancy

Busy Day!

This morning's wake-up call was a trip to have an echocardiogram done. We were not warned about having one last night, so it really was a surprise this morning. Apparently, one or more of the doctors wanted some very specific 3-D pictures of Rebekah's trunk and conduit to see if there was any infection growing inside her heart. We still haven't heard what the results are, but I'm going to assume that no news is good news. If there was a problem, we would have heard by now.

We had no sooner gotten back to our room after the echo then they told us we were headed to x-ray! I barely had enough time to get Rebekah the milk she was asking for! :) The x-rays were to check Rebekah's heart and lungs. Again, we haven't heard anything, so I'm assuming nothing was out of the ordinary. I will be requesting that we discontinue the chest physical therapy if her x-ray looked good. It is one more interruption in our day that we can do without if everything looks as good as the therapists say she sounds.

When we got back from x-ray, I had a few minutes to feed Rebekah some breakfast, then it was time for the doctors to come in for rounds. Not much new information there. A few days ago, the doctors had thought that we might be dealing with a virus of some sort, but the fevers have gone on long enough that there isn't much chance of this being viral. Dr. Hlavacek said that it's about a 50/50 chance of ever determining what these fevers are caused by. He said a lot of the time, post-surgical fevers just come and go with no explanation. One day she could wake up and be fever-free and that will be the end of it. Or, it could be a sign of something else going on, and that is what the doctors are trying to figure out. Dr. Hlavacek said that when a fever gets higher, it is a result of a surge of bacteria (in this case) being let out into the body, and the fever is the body's signal that white blood cells are going off to fight the infection. So, ideally, he would like to get blood samples and cultures when Rebekah's fever is higher than 101 so they will have the best chance of figuring out what's going on. I'm not sure of all of the tests he is thinking of, but one is going to be a urinalysis to see if Rebekah has a UTI. She has never had one before, and doesn't really act like she has one now, but he's going to rule it out. Other than that, he said they were going to do some blood tests that were "a little outside of the box" to see if they can pinpoint this fever thing.

So, while I am very grateful that we are not dealing with something much, much worse, it is very frustrating to be here with no end in sight. Especially with an increasingly bored little girl! Rebekah is not able to go to the playroom, or interact with other patients because we don't know the cause of her fever, and we certainly don't want to spread something to another patient. We're just taking things one day at a time!

The good news is that one of the physical therapists brought a play mat and a bench so that Rebekah can be out of her crib and playing on the floor. We played on the mat for a couple of hours this afternoon. Rebekah is sitting very well without support, and she did a bit of crawling Rebekah-style today. We had wondered if supporting her arms to crawl would be too much pressure on her chest and incision, but apparently it did not bother her at all. She didn't even hesitate, so we are excited about that!

That's pretty much the latest from 781! Looks like we'll be hanging around a while longer!

Nancy

Playtime!

I'm talented! I can play the piano with my feet, play with blocks and wave all at the same time!

What a difference.....

.......24 hours can make! Yesterday, Rebekah's white blood count was still climbing, her fevers were high, and she was just miserable. The doctors were talking about scans, more blood work and possibly an infected incision.

Today, Rebekah is looking much better! Her fevers are not gone, but they are lower and now classified as "low-grade." As of this morning's blood work, her white blood count has dropped, which is great news! Dr. Bradley came in before 7:00 this morning to check Rebekah's incision for himself, and he is very pleased with how it looks; he is not at all worried that it is infected. He said it looks great! So, the plan is for Rebekah to make it for 24 hours fever-free with no other symptoms. If we make it to that mark, we may get to start talking about that magical place called "home!"

Drew made it home safely yesterday afternoon, and the boys were beyond excited to see him! We had not mentioned anything to them about Drew going home, just in case for some reason plans changed at the last minute. Drew said Aaron told him over and over "Thank you for coming home, Daddy!" And Caleb apparently has been Drew's shadow since he got home. Zac and Justin were also thrilled to see Daddy and tell him all about their adventures with Grammy.

Rebekah has had a busy morning so far! We have had breakfast, bath time, bed change, vitals, the daily weight check, hair styled, a lotion massage, respiratory therapy and if we can keep people out of our room for longer than ten minutes at a time, hopefully nap time! This busy schedule can wear a girl out!

So, we're still taking it one day at a time here, but hopefully we won't have to count too many more days before we can head home also!

Nancy

Good morning everyone! :)

Rebekah has become an early bird here in the hospital. She used to sleep in till 8:00 or so at home, and now she is waking up between 6 and 6:30. Rise and shine, Sunshine! :)

We are back to a frustrating "square one" here in Room 781. For the last three days, Rebekah's white blood cell counts have been rising, indicating an infection. She has also had a fever for the last three days, ranging from 99 to over 101. The resident that has been on call this weekend has been most concerned about a possible wound infection, or something else going on with that swollen area behind Rebekah's left ear than just a blood clot. At this point, the doctors are working on ruling out possible sources of infection - she does not have an ear infection, and the blood cultures came back negative for a blood infection (yay!!). There will be another doctor on call starting tomorrow (one we really like!), and there is the possibility of having some kind of imaging done on that swollen area. One thing the resident brought up is the possibility of that area being a swollen lymph node. He doesn't really think that is the case, but he cannot rule out the possibility, either. The other thing he said is that sometimes wound infections can brew deeper in the chest and not come to the surface for a few days.

So, all of that means that we are staying put for the foreseeable future. Rebekah is also confined to her room until the source of infection can be found and treated. We're going to have an interesting time keeping this little girl occupied in this small space! :)

Under the possibility of going home soon, I had not pushed for PT and OT in the last couple of days. I will definitely be more aggressive on getting that set up this week. Rebekah is making huge strides on her own, but a little therapy certainly won't hurt. :) Rebekah is sitting up on her own and she even used Drew's arms to pull herself up to a standing position briefly. She loves playing with Mega blocks in her crib, and she has a little piano toy that she has enjoyed. She also has a board book that a local charity gave her (Why, oh why, did I not think to bring any of her board books???) that she absolutely loves. Of course, she also has lots of her stuffed animals to play with, too.

In light of today's news, we have decided that Drew is going home today. There are things that he needs to get done at home, and the boys could use some Daddy time. So, we are going to have a few days of just girly things. I think we'll have a pedicure party and paint our toenails this afternoon or tomorrow. :) And we'll be able to listen to Christmas music as much as we want!

While we are disappointed that we will be here for at least a few more days, if not longer, we would much rather Rebekah stay here and get these issues resolved before we head home. We are in the best place possible for our little Boo!

Nancy

Saturday

We have had quite a boring Saturday here in Rebekah's room. I guess that's the best kind to have when you're in the hospital! :) Rebekah has still had a fever for most of today, so the doctors are pretty sure she has something going on. This morning during rounds, the resident told us that they were going to watch Rebekah to see if she continued to have a fever today (she did) and that tomorrow they would repeat the blood work. Yesterday's blood work showed elevated white blood cell counts, which would indicate some kind of infection. However, the WBC count was not high enough to indicate that an antibiotic needed to be started. With Rebekah's continued fever today, we are guessing that tomorrow's blood work will show an even higher WBC count.

Because of Rebekah's fever, she was not allowed to leave her room or go to the playroom today. We have spent a lot of today rocking in the rocking chair, watching Baby Einstein DVD's and baby sign language DVD's. Those are Rebekah's favorites! We were also able to bring some toys back to the room from the playroom, so we've been playing with Mega blocks in our room.

Overall Rebekah has had a good day despite the fevers. She has periods of fussiness and times when she very obviously does not feel good, but she has also had brief times of playing and being cute! After days of observing doctors and nurses and Mommy and Daddy washing their hands, Rebekah has now learned the sign for handwashing. It is really cute to see her laying in bed asking to wash her hands! :) We also "bent" the rules a little today and called the boys from Rebekah's room. Technically we should leave the patient area to make calls, but the boys really enjoyed talking to Rebekah. She held the phone a long time listening to them talk, and she kept waving every time we told her to tell the boys "hi." I think she misses those boys - I know Drew and I do!

I don't think I've mentioned it on the blog before, but a day or so after surgery, I noticed a large (maybe 2-inch) area behind Rebekah's left ear at her hairline. It is quite red and swollen. When I first brought it to Dr. Graham's attention, he felt that Rebekah may have been laying on something during the 8+ hours she was in the OR that caused a reaction with her skin. However, the area has not improved any in over a week. When I asked the resident about it this yesterday, he didn't really know what to think of it. After doing some thinking and researching, this morning he told me that he feels maybe Rebekah had some blood pool there during surgery and formed a clot that will take weeks to dissipate. He gave me a few signs to watch for (growing larger, becoming redder, fluid-filled) and said that if any of those things occurred, that they would want to know immediately. Otherwise, he said we pretty much just wait for her body to break it down over time. Has anyone else heard of this? I can't upload a picture right now to show you what it looks like (I couldn't get a clear/not blurry picture of it with my cell phone.). If we get home and it still looks like this, I will upload a picture so you all can see it. I know for sure that it was not there prior to surgery, and I know for sure I noticed it at least the Saturday evening after surgery.

So the plan is to stay put until this fever gets figured out. I am happy to say that Rebekah's lungs are much better-sounding today. We can hear (or not hear!) the lack of "junk" rattling around in her chest when she breathes. Oh, and if you missed the earlier picture, Rebekah is no longer on oxygen!!! Our night nurse was able to wean Rebekah down during the night, and we have not had to turn it back on today. There have been a few times when Rebekah's sats dip into the 70's, but she is always able to bring it right back up within a minute or two. The only concern would be is if it took her a long time to get her sats back up into the 90's. We are thrilled at the thought of going home without oxygen!!

Nancy