We're Home!

Day 5 and 6 post-op were long days.  From a cardiac perspective everything went pretty well....

2 chest tubes pulled

 

Cardiac pacing wires taken out

 

Chest X-ray complete

 

Echo finished
 

Savannah Faith didn't really mind most of the procedures thanks to a dose of Versed and Morphine. 

Yup...she was a little loopy....

Unfortunately we faced other obstacles besides her cardiac issues.

Since the surgery, I had noticed that Savannah Faith's voice was not coming back. 

Her once robust cry sounded more like a kitten's mew. 

 

Her typical ear-splitting squeals were squeaks. 

 

And with each bottle feeding she was coughing.

These symptoms pointed to the possibility of vocal cord damage.

 

So after what was already a long day, on Friday, Savannah Faith underwent a swallow test to determine if she was aspirating.  Due to her significant oral aversion issues (read...she only takes a bottle, with a certain nipple, with certain formula mixed with certain rice cereal and will only drink it after a specific ritual) clearly she was not willing to drink the barium needed to get a conclusive swallow study. 

They tried to give her barium by syringe.  Amazingly, even then, she seemed to hold it in her mouth so long that it was diluted with saliva.  It confounded both the speech pathologist and the radiologist.  Out of the four swallows they managed to get into her mouth, they only captured one on film and it was "inconclusive" as to whether she was swallowing properly or aspirating. 

After that lovely test, the ENT team came to her room and did a scope to determine if her vocal cords were damaged.  It was found that she has left vocal cord paresis.   The paresis is due to damage to her recurrent laryngeal nerve.   

Elle, Savannah's nurse on Friday, was SO kind.  Despite the litany of tests, she made the whole day bearable. 

The results of the scope are frustrating since it is impossible to predict when and/or if she will regain full use of her left vocal cord.  In the meantime we are watching closely for signs of significant aspiration...fever, rapid breathing, etc. that point to the onset of pneumonia.  We will also be following-up with both her pediatrician and pediatric cardiologist on Thursday for a chest x-ray and consults on what tests are appropriate as we move forward.

I'm grieving the loss of her sweet, little voice and the extra layer of difficulty this will add to her already significant global delays.  Please pray with us that her nerve will regenerate and heal quickly and/or that her right vocal cord will begin compensating for the weakness in her left vocal cord.

Because her volume is now just a whisper,

it is very difficult for us to interpret her cries

 and meet her needs.  

Before surgery, I knew what each cry meant...hungry, mad, scared. 

You get the picture. 

Now her almost silent cries just sound pitiful and can not be differentiated, one from the other. 

Pray that we will learn to read her body language and be able to meet her needs quickly. 

That's so important for a newly adopted child.

 

 

I was worn out by Friday evening.  Tired of seeing Savannah Faith undergo tests.  Tired of advocating for her when caregivers didn't understand the extra layer of complications that her first 2 years of deprivation in an orphanage caused.  Tired of trying to assure Savannah Faith's continuity of care when different caregivers had different ideas of what should happen next. 


Savannah Faith was worn out too....

Thankfully, Saturday morning Phil and the three younger girls drove to Charleston to encourage me and offer Savannah Faith a distraction from needle sticks, testing and being force fed medicines multiple times a day.


Sarah Mei, Izzy and Lily Rose think the Atrium (the children's playroom in the hospital) is on the list of historic sites in Charleston.  They couldn't wait to play and stay at the Ronald McDonald House where they shared a twin trundle bed. 

 


Despite her expression in the photo, Savannah Faith was thrilled to see Phil and her sisters!  (I actually think it might have been the balloon she was happy to see...but we'll go with the "she was happy to see her dad and sisters" story!)

On Sunday Dr. Savage, a GREAT cardiology attending at MUSC, gave us the celebratory news that we could leave.  Sadly I didn't get a photo of him with Savannah Faith. 

However, earlier in the week I did get a photo of Savannah Faith with Jennifer, Dr. Bradley's PA.  Jennifer has actually assisted Dr. Bradley in several of our girls' surgeries.  She always makes sure she stops by the room and plays with the girls when they are in the hospital. 

She made friends with Savannah Faith by showing Savannah her MUSC badge.

One of the things I like about our trips to MUSC is the girls really enjoy the staff.  As Izzy told us after one of her heart surgeries..."Miss Jen is my friend."  It's great when your children view their  caregivers as their friends and have no fear! 


Thanks Jen for always taking that extra special time with our girls.

Now we're home and we're thankful to have the whole family under one roof. 

Pray, with us, for Savannah Faith's complete healing...especially for her sweet voice to return.

Step Down Unit - Day One and Day Two

Savannah had a rough night two nights ago.  She was furious after having her chest x-ray and echo and just wouldn't calm back down.  After 4 hours of crying, screaming, arching her back....having the nurse, myself, and Torie try to calm her down....having Lanier, the fellow on duty (who is a fabulous Dr.), come and try to entertain her with his MUSC badge...a dose of morphine and 2 1/2 doses of Versed, she FINALLY fell asleep.  It was a long night!


The good news is she woke up in a much better mood in the morning.

Joy, one of the PCICU nurse's who has cared for our other 3 girls, is now a charge nurse in the PCICU.  Sadly she didn't get to take care of Savannah this time around, but she did stop by to entertain Savannah several times when we had to leave the unit.  (Visitors aren't allowed to stay on the unit when new cases are being admitted.) 

We are so grateful for Joy and all the amazing nurses in the PCICU.  Missy and Angela, two nurses that we hadn't met before, cared for Savannah this time!  They were skilled medically, compassionate and fun besides!!

We always have to get a photo of Joy with our girls...

After having such a good morning, yesterday, they decided to send Savannah to the step-down unit.  She is still on IV Lasix, since her lungs look a little wet.  But other than that we are just waiting for her drainage to slow from her chest tubes.

While Savannah took a nap, we had a surprise visit from Dr. Tim Watson.  He is one of our all-time favorite fellows from MUSC.  Sadly (for us), he just finished his 4th year fellowship here and took a great position at Sibley Children's Hospital in Atlanta, GA.  They are gaining a great Dr. AND his beautiful wife Laura, who is one of our favorite PCICU nurses!  What a duo!

Just as Tim was leaving, Scott Butcher brought us a beautiful Annabelle Basket.  After years of being blessed by their Annabelle Baskets, we finally connected with Scott and Rebecca this year.  (To read more about their amazing ministry and the beautiful honoring of their daughter in heaven, Annabelle, go to http://annabellebaskets.blogspot.com).  It has been such a joy to get to know them, hear their story, and begin a friendship.  From the first time Rebecca and I met, it was like we had known each other for years!  The basket Scott delivered was a little "extra" special Annabelle basket and Torie and I had such fun unpacking ALL the goodies.

Savannah Faith was adorable sporting one of the many hair bows that Rebecca sent.

(The Disney princess sunglasses were a gift from Torie...surprise, surprise.  Torie and Michaela are the biggest princess fans in our house, despite the fact that they are 22 and 17.  You got to love it!)

 

 

We are so grateful for every one's prayers, FB messages, and texts.  We continue to be amazed at Savannah Faith's smooth recovery and her clear disregard for the fact that she had open-heart surgery.  This is evidenced in the photo below. 

 

 

 

 

 

We still have a few hurdles to clear so continue to pray, but Savannah Faith's progress is steady!

 

Extubated

They were able to extubate Savannah Faith last night.  And after sleeping all night and until 11:00 a.m. today, she finally decided to wake up.

The great news is her blood pressure is where is it needs to be.  She took a full bottle of formula from me at 1:00.  She doesn't seem to be struggling with pain despite the fact we can't give her the full pain protocol.  (She needs to take her Tylenol and other pain med by mouth, and until I can sneak it into her bottle, she's not getting it.).

Right now she is happily kicking her legs and watching Blue Clues despite the fact that she still has a central line, 2 arterial lines, 2 IV lines (one in each foot), an oxygen cannula in her nose, a foley and pacing wires attached to her heart and an external box.  Oh and did I mention 2 chest tubes and a new median sternotomy (incision in the chest and "cracked" sternum.). Any adult would me whining and moaning.
The only prayer request is that her heart rhythm's will stabilize.  Her heart rate is still slow and is being completely controlled by the pacing box.

PCICU

Savannah is out of surgery and in the PCICU.  Her heart rate is too slow, so Dr. Bradley left her pacing wires in her heart.  She is also battling a slightly elevated blood pressure.  Needless to say they are keeping her heavily sedated. 

That's a good thing.  As long as she's sedated, she won't notice she is still intubated.

I love meeting with Dr. Bradley after surgeries.  He is the picture of calm and collected.  After spending 6+ hours in the OR he acts like he just took a stroll around the block. 

He calmly sat down and discussed Savannah Faith's heart.  As he suspected,  her left pulmonary artery was severely hypoplastic.  He augmented it as much as possible.  He also left pulmonary inflow, although, since she still has severe pulmonary stenosis, it won't introduce a lot of blood flow.

Everything else was fairly straight forward for a Glen.  He recommended waiting for a while before doing the Fontan (longer than a year).  He wants Savannah Faith to get completely caught up developmentally.

I told him he had to promise me he wouldn't retire before I brought her back for her Fontan.  Since I calculate he and I are close to the same age, I hope he makes good on that promise!

I can't imagine letting anyone else touch my girls' hearts.

Now the waiting game begins. 

 

Waiting for extubation.

 

Waiting for her heart rhythm to stabilize.

 

Waiting for her blood pressure to come down.

 

Waiting for her drainage to slow.

The reality of the fragility of life came crashing down 10 minutes ago, when a family in the PCICU waiting room received the tragic news that their daughter didn't survive after her open-heart surgery.

I tried to shine the light of Christ by reading to their five year old daughter as she watched her mother and father sob uncontrollably and hold their twin son who now will never know his twin sister. 

Pray for that family. 

 

Pray for God's comfort. 

 

Pray that He will be glorified in our responses and words.

Off Heart/Lung Bypass

I just received an update and Savannah Faith came off heart/lung bypass. 

Now the surgical team will go through the process of warming up her body to see how her heart looks at it begins functioning on it's own.

If Dr. Bradley is happy with what he sees, they will start the process of closing her up.  If not, they will put her back on by-pass. 

Surgery could be complete within the next hour or hour and a half.



I was looking through some of the first photos we received of Savannah Faith.  It's hard to believe that this fragile little child....

is our robust toddler...

We're so grateful Love Without Boundaries (www.lovewithoutboundaries.com) intervened and brought "Darcy", as she was known in their program, into their Healing Home last September.  Without their medical intervention for Savannah Faith, I don't know if she would be here today! 

What a change good medical care and the love of a family makes in the life of a child!

Savannah's on Heart/Lung By-Pass

We received an update at 10:30 a.m.  Savannah Faith is on heart/lung by-pass and is stable. 

I have to tell you....I live for that pager to beep every hour for an update. 

Even though it is only a line or two

 

with no real, pertinent information,

 

just to know our sweet Savannah Faith is being watched over

 

and to know someone remembers I'm in the waiting room...well, waiting.

 

It means a lot!

 

 

Next update - 11:30 a.m.

Today's the Day!

Savannah Faith was none too impressed by being awakened at 5:00 a.m.  Then again, neither was I! 

She started crying the minute we walked into the hospital.  Clearly she remembered our Friday visit.

Thankfully I was able to distract her with games like Itsy Bitsy Spider (thanks mom for teaching her that one last week) and Patty Cake.

However, Savannah Faith was still incredulous that we were making her go through the entire process.

Thankfully, we were blessed with the "A" team for our anesthesiology team.  Dr. Theruvath was so kind to Savannah Faith and allowed me to hold her until she was completely loopy from her pre-meds.

She's in the OR now preparing for her Glen.  Now we wait.    Knowing she's in capable hands.  Both humanly speaking and, more importantly, carried in the hands of the Great Physician!

Charleston and Open-Heart Surgery on Monday

Torie, Savannah Faith, and I headed to Charleston on Thursday evening.  Savannah Faith had her pre-op appointment on Friday morning.

As usual our family had to " divide and conquer" for this medical expedition.

We met with Dr. Bradley yesterday and discussed surgical options for Savannah Faith's scheduled Monday open-heart surgery. 

As we knew, Savannah's original referral paperwork was erroneous, and her actual heart conditions include Double Outlet Left Ventricle, VSD, pulmonary stenosis, right ventricle hypoplasia, and left pulmonary artery stenosis and hypoplasia.  She also has a unique right/left ventricle configuration which is called upstairs/downstairs vs. the normal left to right configuration.  Due to all of these facts, Dr. Bradley believes the Glen/Fontan route will most likely be the best option for Savannah.  He is probably going to leave an extra inflow tract, in addition to the Glen, to encourage more growth of her pulmonary artery.  The possible downside of this option is she may drain more after surgery. 

Thankfully we have implicit trust, under the guiding hand and wisdom of the great Physician, in Dr. Bradley's decision-making abilities and surgery techniques.  After already completing five previous open-heart surgeries on our daughters', we know we are in capable hands! 

After completing blood work, an regular echo and 3-D echo, an x-ray and visits with the anesthesiology team, surgical team and Dr. Bradley, we left the hospital around 3:30 p.m. on Friday afternoon.  Savannah Faith was never so happy to leave a building.  I wonder what she will think Monday morning when we walk back through those doors?

Today, since nothing medically was scheduled, we decided to head out to Charleston's famous Battery for some relaxation.

The architecture of this southern city has a charm and grace all it's own, and we had a great time strolling down the streets and looking at the homes.

Since moving away from the Low Country almost 16 years ago, two of the things I've missed the most are the amazing seafood and the majestic Live Oaks.  Today at The Battery, I saw beautiful Live Oaks.

I'm not sure Savannah appreciated the grandeur of the architecture, the beauty of the waterway, or the magnificence of the trees...

but she did enjoy playing in the grassy area in the park.

Her favorite game was getting thrown in the air and caught by Torie.

And I enjoyed listening to her giggles and capturing all her expressions!

Tomorrow we rest on the Sabbath and then Monday is the big day. 

We would appreciate your prayers as Savannah Faith heads into what will be a 5-6 hour open-heart surgery.  I'll try to update the blog throughout the day, on Monday, and in the weeks ahead.