A Special Needs Grandchild

Looking back, the first time I realized that I was needed was the day my daughter called me from Children’s Hospital in Birmingham, AL. 

She was crying and was terribly upset and she said, “My daughter is in critical condition and I am afraid she is going die.”
My granddaughter had already gone through a twelve-hour surgery where the doctors cut through the top of her head down to the base of her mouth to repair a  basal encephalocele and save the pituitary gland

Hubby drove me to Birmingham Children’s Hospital. 

I stayed the night sleeping in a straight back chair. 

My granddaughter seemed to be improving, so the next day I went home.   

The following Tuesday, my granddaughter took a turn for the worse.

She was leaking spinal fluid out her mouth, had two strokes and was in a coma. The doctors said that they would have to repair the leak, this would be her second surgery.

I stayed at the hospital with my daughter until my granddaughter stabilized which was about a week.

There were prayers going up everywhere by everyone we knew, for my little granddaughter to survive.

God answered those prayers. 

It was a long haul.

While she was struggling to survive in intensive care we tried to keep busy by taking long walks, going to the restaurant to eat.

We would go to the children’s harbor where my daughter got her haircut and I could work out on the exercise machines and where we also washed clothes.  

The Children’s Harbor was built for parents and their families to use while their children are staying for long periods of time in the hospital. 

We could only stay for short periods of time in the Intensive Care Unit and sometimes when they had to admit a child or one would die we would have to leave, and that was quite often. 

My granddaughter's condition looked critical from the day she was born and I did not want to get to close to her. 

I guess I was afraid of her dying, but I did want to remember her so I got out my camera and started taking pictures of her every time I saw her.

My granddaughter is an amazing little girl, a real fighter.  

She came through two difficult surgeries and came out with a different little girl. 

She was so frail and I was so afraid to touch, to feed, or even hold her. 

She gradually began to come back to us. 

Her smile slowly came back. 

The strokes left her paralyzed completely on the right side. The left side of the brain controls the right side of the body.
We later found out that she had zero blood flow to the left side of her brain.

We kept praying she would roll over, crawl or someday walk.
She could walk with the help of a walker but never on her own when she falls from a sitting position she cannot get herself up.
She depends totally on others to take care of her.

2006 ~ August 21-23, Trip to St. Louis Children’s Hospital St Louis, Mo

Day 1: Monday, August 21, 2006 

A trip to St. Louis Missouri to take my granddaughter to Children’s Hospital in St Louis, Mo.

Before we left for St. Louis, I walked two miles today, washed my clothes, and went to my daughter's house. 

My daughter and I packed the car, we went to the bank to get some cash for our trip, and we went to get the car washed. 

We were on the road at about 2:30 P.M. 

I drove through Savannah, to Dyersburg to Interstate 55. 

We stopped at a filling station just off the Interstate to fill up with gas, change the baby's diaper, purchase some medicine for my daughter's headache, and swap drivers. 

For lunch, we stopped at Cracker Barrel in Cape Girardeau, where I ordered a children's plate of corn, pinto beans, cornbread, and iced tea. My daughter also ordered a children's plate of pinto beans and chicken and dumplings which she shared with my granddaughter.

Cape Girardeau is about two hours away from St. Louis. 

We arrived at Heaven House at about 8:00 p.m. and were given a tour of the Haven House.

The Haven House has four wings, each wing has its own kitchen, its own living room, and its own play area.
Our room has two, & a half beds and a crib for Meadow.

The Haven House St Louis

My granddaughter at the Haven House in her jumper

Day 2: Tuesday, August 22, 2006

We stayed only one day and checked out the next morning at 10:00 A.M.
We went next door to Walgreens where we bought two small disposable cameras, a teething ring for my granddaughter, two bottles of water, and some baby wipes. 

My daughter drove us down I-270 to 64/40  to downtown St. Louis. 

We stopped at the Old Cathedral parking lot and walked to the arch.  

At the entrance to the Arch were security guards where everything was searched including
my granddaughter's stroller and she had to be taken out of the stroller.

The guards made us pour the water out of the water bottles that we had just bought and we had to open our purses for them to search.

The man behind us said, “I did not know I had so much junk in my pockets when he was asked to empty his pocket and then told the security guards, just wait until you see what is in my wife’s purse.
My brother-in-law said when I was a kid he lived in St. Louis and his elementary class each added a brick to the bottom of St. Louis Arch. Construction of the arch began in 1963 and was finished in 1965.
Inside the bottom of the arch we walked through the Western Expansion and shopped at the museum but we did not have time to go up inside the arch.

On the way to Children’s Hospital, Lora made a wrong turn, she turned onto the 64/40 highway toward Illinois instead of St. Louis.
We had to cross the bridge that leads us into St Louis, Illinois, Lora turned around and we were on our way to Children's Hospital. 

We finally, arrived at the Children’s Hospital, where my granddaughter will see Mary Bertrand, MD.

Mary focuses her practice on Pediatric Epilepsy.

The address is one Children’s Place Suite 2D St Louis, Missouri 63110, and her telephone # is 314-454-6120.
Children's Hospital St Louis BJC Health Care

We were taken to a room where my daughter talked to Mary, for what seemed like hours about my granddaughter's condition.

My granddaughter was admitted to the hospital for an EEG and an MRI. 

While they were getting my granddaughter ready for her EEG, my daughter and I walked downstairs for lunch. EEG-An electroencephalograph.

My granddaughter having an EEG

Several doctors & nurses came in to see my granddaughter one was a white pregnant woman an Asian doctor, several RNs, and an EEG Nurse. That night we slept in the hospital. 

Day 3: Wednesday, August 23, 2006

We slept until 7:30 a.m. the following day. 

My granddaughter was chipper after her breakfast, a bowel movement, and a nice bath and she is now playing.

My granddaughter's  MRI is at 10:00 A.M. today.
MRI -magnetic resonance imaging
MRI IMAGES

The nurses tried to get a drip started in my granddaughter's arm before her MRI but they were having a problem getting the needle in her veins.

My granddaughter started to scream with pain, which made me sick, and all I wanted to do was tell them to quit. 

I walked over to the window so I could not see what was happening because I was about to pass out.

My granddaughter did not have her MRI until after 3:00 p.m.
It was a fantastic view of St. Louis Arch and downtown St. Louis from my granddaughters' room.

My granddaughter was dismissed later that afternoon we started our six-hour ride home.