Friday, January 29, 2016

Still Asleep - January 29, 2016

Lilit has been stable (including hemodynamically) since her surgery and, after careful consideration, the doctors plan to extubate her tomorrow morning to allow her to wake up.

Lilit is surrounded by love and covered in positive thoughts from every corner of he world.  Thanks to everyone who has kept her in prayers, sent cards and gifts, donated to her Go Fund Me, and inquired about her status.

Update 6:00 pm - This afternoon the doctors decided to make an attempt at extubating Lilit. In order to do so, she would need to be awake, so they cut back on her sedation and monitored her breathing effort.  Since her lungs are small, breathing on her own was too challenging for Lilit at this time, so she will remain heavily sedated and intubated likely until the surgery on Wednesday, as was the initial plan.

Thursday, January 28, 2016

Sleeping Beauty - January 28, 2016

As posted earlier, Lilit's surgery could not be finished yesterday due to concerns over the length of time she had spent under anesthesia.  The procedure is scheduled to be completed next Wednesday, February 3 at 9:00 am in what is expected to be an additional four hours in the OR.  Until then, Lilit will be Sleeping Beauty in PICU where she is sedated and stable.  Siranoush will be with her as much as possible, but also get some rest herself.

If there's any new information, it will be provided here, but do expect it to be rather quiet for a while on Lilit's blog.

Wednesday, January 27, 2016

Surgery Day - January 27, 2016


Lilit and her team of medical professionals are ready for the big surgery today.  The procedure will last 10-12 hours and we do not expect Lilit to get into recovery until late tonight.

As part of the surgery today, a titanium-cobalt rod of about one foot in length will be inserted in Lilit's spine.  Her posture will be noticeably straighter right after the surgery and she is expected to gain an instant one to two inches of height.  Lilit's chest deformity and difference in legs will correct naturally as a result of this surgery which means Lilit will have to learn to walk again because her feet will be level for the first time in her life.  She could be in rehab for up to two months to accomplish this feat.

Siranoush and Lilit this morning
9:10 am - Lilit is still in pre-op.

9:16 am - Lilit has been taken into the OR.

11:45 am - Surgery is in progress.  Next update expected in about two hours.

2:56 pm - Lilit's temperature dropped unexpectedly, so surgery was stopped to warm her.  The pediatric neurosurgeon has now moved into stage 2 of the procedure which is expected to take about two hours.  Next update hopefully in late afternoon.

4:43 pm - Stage 2 of the surgery is still underway and all is going well.  Lilit is not losing much blood, so there should be no further delays.  The doctors expect to be finished before midnight.  The next update should come around 6:30 pm.

7:56 pm - Stage 2 of the surgery is complete and the doctors have moved on to the spinal fusion portion of the procedure.  They are still on track to be finished by midnight.

8:52 pm - Stage 3 of the surgery continues and all is well.  As of right now, Lilit is expected to be in surgery for another three to five hours.

11:44 pm - Due to concerns over how long Lilit had been under anesthesia, the surgical team could not finish the procedure.  Lilit was taken to PICU after midnight where she will remain sedated until next week when an additional four hour surgery will complete the remaining ten percent of what was started today.  Dr. Caridi said that Lilit's heart, lungs, spinal signals etc. all look good.

Tuesday, January 26, 2016

Getting Ready - January 25 & 26, 2016

There's not been much news from Lilit as she spent two more quiet days at the hospital.  She continued to receive gifts from people who care about her very much and was able to while away the hours.

Tomorrow's the day of the surgery which will begin at 9:00 am.  Lilit will be moved from her room to the OR holding area approximately 30-60 minutes prior to that time and wait there surrounded by her travel companions, people from SOAR, and medical professionals.

If any updates are provided during the surgery tomorrow, they will be made available here.  Otherwise, any news given after the surgery has concluded will be posted as soon as possible.

Please keep Lilit in your thoughts.

P.S. Members of Lilit's medical team describe her as "a burst of sunshine", "a rainbow", and having "amazing energy."

Sunday, January 24, 2016

A Quiet Weekend - January 23 & 24, 2016

Lilit is spending a calm and snowy weekend in her room at Mt. Sinai.  She has games to play, crafts to create, and videos from her friend Ella to watch.

Lilit even had time for a little interview.

Lilit-jan, how do you feel today? 
Well, why? 

What do you think about America? 
It's good, but I want to go back to the orphanage.

Did you like flying in an airplane? 
I didn't like it as it was too long to fly.

Have you ever seen as much snow as fell yesterday? Do you like snow? 
Yes, I saw so much snow in the yard of orphanage. Yes, I like it very much, but it's cold.

Are you ready for the doctors to make your back better? 
I'm ready if it's not painful, I'm not ready if it's painful.

What do you want to be when you grow up? 
I want to become a nurse.

Many people that you don't know love you. Do you have a message for them? 
I love them all, too. 

Friday, January 22, 2016

The Green Light - January 22, 2016

After reviewing all information, Dr. Caridi and his team decided that Lilit is, indeed, a candidate for spinal surgery that will significantly enhance her quality of life as well as prevent additional health problems in adolescence.

Lilit's ten-hour surgery will be complicated, removing several ribs and vertebrae and inserting a metal rod to reduce the 120 degree curvature of her spine.  If all goes as planned, Lilit will not need additional surgeries or follow-up care in the future.  Rehabilitation could take as long as two months, however.

Lilit's surgery is scheduled for January 27.

Diagnostics - January 21, 2016

Today, Lilit underwent a number of diagnostic tests (CAT scan, MRI, and X-rays) to determine whether she is a surgical candidate.  Dr. Caridi and his team will be reviewing the results and we are awaiting their recommendations.

Lilit's keeping busy.

At The Hospital - January 20, 2016

This morning, Lilit checked into Mt. Sinai where she is under the care of Dr. John Caridi who, along with his entire team, is donating all professional services for Lilit's care.  SOAR and everyone who loves Lilit is sincerely grateful for this generosity.

Lilit was assigned to a room and will be in-patient through diagnostics, surgery, and recovery if applicable.

At the hospital, Lilit was greeted by a special gift sent to her by her friend Ella who used to live at the Gyumri orphanage with Lilit for six years prior to being adopted.  Ella has never forgotten Lilit and speaks of her frequently.  She likes to say she and Lilit were "sister-friends."  Lilit looked happy to be hearing from Ella whom she had not seen in over 15 months.

On Her Way - January 19, 2016

Lilit began her journey in the wee hours of the morning on January 19, 2016 when she left Mari Izmirlyan Orphanage in Yerevan, her home since late summer 2014, and headed to the airport with her travel companions, Siranoush and Andranik.  From Yerevan, they traveled to Moscow, a three hour flight, Lilit's first.  She seemed to take it in stride.

Sleeping Beauty

Wheelchair service that had been ordered for Lilit helped the travelers reach their connector to JFK Airport in New York.  Flying from Moscow to New York takes about eleven hours, so it was good to see that Lilit kept her spirits bright prior to boarding.

After a long transatlantic flight, Lilit, Siranoush and Andranik arrived in America.  They checked into a hotel and spent time with several people from SOAR who welcomed them and helped them settle in.

Meet Lilit

Lilit is eight years old.  She was born in Armenia in 2007 and diagnosed with severe scoliosis.  Due to this condition, Lilit was placed in an orphanage at ten days old.  There, she grew and learned, played and sang, laughed and cried, and had many friends.  However, medical treatment was not available to her in Armenia.

In 2016 after months of planning, the Society for Orphaned Armenian Relief (SOAR) and the Harold and Josephine Gulamerian Armenian Orphan Fund made it possible for Lilit to travel to the United States to finally receive life-saving surgery.  This blog is a chronicle of her journey.