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.