Meadow' second surgery at Lucile Packard Childrens Hospital in Stanford

January 14-18, 2008

Day 14: Monday 14, January 2008 

I slept until 9:00 A.M., got up, gave Meadow a can of Pedi-sure, and put her back in the bed with Lora.

I showered and went downstairs for breakfast. 

When I returned, Lora was getting ready, and we walked back downstairs, where Meadow drank two glasses of juice.

We spent most of the day at RMH. We walked across the street to the Stanford Mall, where Lora bought Meadow some anti-bacterial soap and body oil.

I bought a nail buffer.

We stopped at Victoria's Secret and Teuscher Chocolates of Switzerland, where we purchased some chocolate candy, and we bought some cheese and nuts at the local fruit market.  

Stanford Mall Palo Alto, CA

Stanford Mall Palo Alto, CA

We walked back to the RMH, where supper was prepared. We had chicken burritos, salad, beans, and rice. 

Lora continues working on Meadows's scrapbook. 

I pushed Meadow upstairs in her wheelchair to our room, where I took pictures and videos of her before her surgery.

I put Meadow in the shower with me. I had to sit down to give Meadow a bath, and I sat on top of the shower drain, which caused the water to overflow onto the bathroom floor. 

I put on our pajamas and then put Meadow to bed. I dried the water on the bathroom floor.

When Lora returned, she gave Meadow her medicine. I fed Meadow a can of Pedi-Sure, and then everyone went to bed. It was around 10:00 P.M.

Day 15: Tuesday, January 15, 2008 

We were up at 4:00 A.M. getting ready for Meadow's second surgery.
Meadow has an EDAS on the left side of her head, which is a bypass of the left internal carotid artery.

We prepare for a hospital stay by packing our bags.
We load the car and drive to the hospital.
Meadow is admitted to the hospital, and we are taken to the second floor for surgery. 

The night before, the Meadow could only have clear liquids until 4:30 A.M. 

Meadow was taken back for pre-op around 6:20 A.M. 

Lora and I both spoke with Dr. Kevin Chas in Neurosurgery and with Kirsten, an RN.

Meadows's team of anesthesia, Nisha, Larkin, and one more, whose name they don't recall, said we would be taking care of Meadow. 

We could not go back to Meadow, so while we waited in the second-floor lobby, we ate a snack of crackers, cheese, nuts, and doughnuts.
We also made a few calls back home to inform family members of Meadows's condition. 
I talked to Charity, and Lora spoke to Josie, her mother-in-law. 

While waiting in the lobby, during Meadow's surgery, we met an oriental woman whose daughter was in the PICU with Meadow.
Her English is choppy, and her little girl is going home today.

I could not sit still, so I walked up and down the stairs.

Doctor Steinberg came out of surgery around 1:00 P.M.
He came over to talk to us. He said Meadow went through the surgery without any complications during her indirect bypass on the left side of her brain. 

There was negative blood flow to the brain before the surgery, and the surgery should correct the blood flow.
We thanked the doctor and walked to the cafeteria for lunch.
We ordered burritos, pudding with granola, and Coke & tea.
When we finished, we went back to the waiting area on the second floor. 

In the waiting area, we met a woman whose daughter was in IPKU and a man from Arizona whose grandson was in PICU. 
We were finally allowed to see Meadow in the PICU. 

The nurse caring for Meadow was Katherine, and her Endocrine doctors were Wilson and Diane. 

Lora stayed in PICU with Meadow, and I went to the lobby, where I worked on my computer.

There was a large family of Spanish-speaking people in the lobby. They left at about 10 P.M. One of the young girls was staying at the RMH, and we talked.

Her husband brought me a pillow to lay my head on, and I thanked him. 

Later, the young girl said that she was going to her uncle's to watch a movie.

When the young girl's grandmother came into the lobby, she said that her granddaughter was not coming back, but I already knew. I thank her. 

I was almost asleep when it was around 11 P.M., Lora said we could sleep in the Serenity Room on the third floor. 
We slept on a couch that let out into a bed. 

Day 16: Wednesday 16, January 2008 

I was up at 8 A.M., changed my clothes, washed my face, brushed my teeth, wet my head, and put makeup on my face. 

Lora gets up, puts on her makeup, and we both go to the second floor to check on Meadow. 

Meadow is still in PICU, and they have not taken her down for her MRI, so both Lora and I go to the cafeteria for breakfast, where we eat French toast, bacon, and cheese. I drink Mountain Dew, and Lora drinks tea. 

We walked back upstairs to Meadow's room, where she was resting. 

Meadow's nurse is Jan, and Lora is talking to her about Meadow's & Madison's eyeglasses. 

Katherine was Meadows's nurse yesterday until 7:30 P.M., and she returned today at 7:30 A.M. Katherine is a traveling nurse from Jacksonville, MS. 

She now lives in San Francisco in an apartment with her husband. 

She said that she has applied for a full-time position at Lucile Packard Children's Hospital. Her husband handles the maintenance at the apartments they live in. He had his own business back in Mississippi, but it was too hard to travel back and forth, so he sold it and moved to San Francisco.

We saw Caleb's mom on the third floor. They have been here for 5 weeks and are hoping to go home soon. 

A group of medical students came through, talking about each patient they had seen.  

Meadow was getting her milk in her G-tube after her MRI. 

I went to the lobby to work on my journal and to post news of Meadow's condition on her CaringBridge website. 

I stayed in the lobby for about two or three hours. Lora came out around 12:30 P.M., and she said Meadow would have to wait another night in the PICU. 

Lora was upset because they had not come to get Meadow for her MRI. 

When I went back to Meadow's room, she let me kiss her hand, but she would not let me wipe her mouth.  

Meadow was watching Baby Einstein on TV when the nurse spoke to her, trying to calm her down, and finally let the nurse wipe her mouth. 

There was construction in the building, and the drilling and hammering were bothering Meadow.

Meadow was scheduled for her MRI at 5 P.M., but they did not arrive until 7 P.M. Lora was getting restless because she was worried that Meadow was not being fed. 

At 9:20 P.M., Meadow was given a cup of  Pedi-Light. 

One of the IVs was taken out of Meadows' arm, while Lora was holding her down.

Meadow is given all her nightly meds, Lora is reading her Harry Potter book, and Meadow is watching the baby channel on TV. 

The nurse starts the Pedi-Sure drip into Meadow's G-tube at 10 and up to 40 per minute. 

Meadow was a little restless during the night.

Some of the families we met while in Palo Alto.

Callie and her mom, Sara, are from Jacksonville

Caleb has a heart problem, and she goes home on January 16.

Caleb has a website called" babiesospecial.com." They are from Lower California in the area of the Eric Brockovich Story.

Andrew and Savannah are Elisha Peter's parents.

They are planning to move from Guam to San Francisco. 

Andrew will have to go back to Guam for three months to work, then be transferred to San Francisco to work as a prison guard.

Brandon and his mother, Vanessa Pearson, came to the RMH from Japan. 

Vanessa's 2-year-old daughter and husband are still in Japan and hope to be in California soon.

Vanessa Pearson and her son

We met Rachael, her sister Kayla, and her mom, Brianna Hall, who is expecting a baby at any time. 

Rachael is going through her third surgery on her heart, and her dad had to go back home to work. 

Lora, Brianna & Kayla Hall

We met a family from Louisiana: Layl, a 4-month-old, her mother, Kelly, and Kelly's mother.

They are hoping to go home soon. 

Layla will be flown back to Louisiana and will have to stay in the hospital there. 

Kelly is only 17 years old, and she has younger siblings back home.

A family from Arizona: the boys' names are Robert (in need of a heart) and Jes, us, and their parents and grandparents. (Jesus later died)

The family from Arizona (second heart failure)

Family from Montana: Gavin, age 6 months; Henry, age 6 months; parent; nd great-grandmother Helen. They left a few days before we did.

Another family from Alaska has been here for 2 years; she has three children.

Her husband works in Alaska, and the girls go to school in Palo Alto, but they do go home for visits. 

I met a woman whose son was waiting for a liver transplant, and I spoke to her several times, but not much because most of the time she was at the hospital. 

The conjoined twins and their Costa Rican sister were staying there, and they could not speak English.  

They were separated in November of 2007 and were leaving the same day as we were.  

The twins' names are Fiorella and Yurelia Rocha Arias.

Meadow and her friend Fiorella or Yurelia, a conjoined twin

Day 17: Thursday, January 17, 2008 

Lora and I spent the night on the third floor in the Serenity Room. The Serenity Room has two restrooms, one shower, two couches that let out into beds, and two chairs that make into beds. 

The Children's Hospital is under construction, and there is no public restroom on the second floor near the children's PICU. 

I showered last night and washed my hair at the RMH. I put on my makeup, combed my hair, and got dressed. 

Lora took a shower, fixed her hair, and dressed. 

We put the bed away, folded the bedding, packed all our belongings, and went downstairs. 

Meadow was awake and a little fussy. 

Meadow's nurse, Theresa, had removed the central line from Meadows's right side.

Meadow is now resting safely in her mother's arms.

Second Moya Moya surgery

I went to the lobby where I ate some peanut butter and crackers, cheese, and a Kashia bar.

I walked back to the PICU, where Meadow was resting, and then they sent Meadow to room 3517 South. 

Little Jordan Hal,l age ,5 is sharing a room with Meado., Jordan had an MR, I and it showed that she has a tumor in her hea,d and she will have surgery next week. 

She will be going home for a few days before the surge, and the nurse came in to take her blood, which frightened her.

Melanie is Meadow's nurse for today.

Meadow drank a can of Pedi-sure. 

Lora said we would have stayed another night, and I slept in the parents' lounge, and Lora remained in the room with Meadow.

Lora said that both of Jordan's parents slept in the room, and they whispered all night.

Jordan was up at dawn so she could eat breakfast with her dad at home. Jordan was up every morning at 5 A.M, then she went back to bed with her mother.

Day 18: Friday, January 18, 2008   

Meadow was awake when I came into her room, so I gave Meadow some Pedi-Sure.

I walked downstairs to the cafeteria, where I bought some French toast and a bottle of tea for breakfast.

I took Lora up an order of French toast. The tea I had brought back was the wrong kind, so Lora took it back to the cafeteria to swap it for chocolate milk.

Doctor Kevin Chaos removed Meadows's bandage while I was gone to the cafeteria.

He said Meadow could be released, so we packed up everything, but we did not leave the hospital right away because Meadow had an appointment with Wan Chen, MA.

At 11 A.M., Lora goes back to sleep sitting on the sofa holding Meadow in her arms, while I am watching a movie on the TV.

Jill from Dr. Steinberg's office came into our room with Sandy. 

Sandy is a Moyamoya survivor, back for her six-month checkup, and wants to meet Meadow.

Wan Chen, MA, a therapist, comes by at 1 P.M. to pick up Meadow. She takes us to her office on the third floor, where she makes a hand splint for Meadow.

Meadow's therapist, Wan Chen

When Chen finishes with the splint, we return to Meadow's room, collect all our belongings, and leave the hospital. 

Lora drives back to the RMH, where I wash our clothes and take a shower. 

I take Meadow to the dining room with me, where I eat a salad from McDonald's and 

Meadow drinks two cups of apple juice and eats several chicken nuggets. 

Meadow and I walk back to the laundry room to finish our laundry.

When we get back to the room, Meadow has a dirty diaper, so I change it.

I put Meadow into the shower with me, and while washing Meadow's head, I find another staple.

I put pajamas on both Meadow and me, and we went looking for Lor. She had fallen asleep in the family room.

I woke Lora up and told them about finding the staple in Meadow's hair.

We all went back to our room, where Lora gave Meadow all her meds.

Lora goes downstairs to eat supper, where she talks to oanotherfamily member,w who isstill up in the dining area.

Meadow and I went to bed.