Tuesday, March 3, 2015

Moya Moya Surgery

January 7-13, 2008 
Day 7: January 7, Monday 2008
At 9:00 A.M., Meadow has an appointment with Doctor Steinberg.
Dr. Steinberg showed us Meadow’s X-rays, then he explained the procedure that he was going to perform and that the procedure was safe, and without the surgery, Meadow would never get any better.
Lora asks Doctor Steinberg many questions and he answers them all to her satisfaction.
We thanked Dr. Steinberg, and we stopped at Androecia’s Market in Stanford Mall for lunch.
Lora and I shared a salmon wrap with chips and pickles, and we both ordered a fruit custard tart. 

After lunch, we rode to San Jose.

Meadow and I were both very sleepy, all we wanted to do, was go back to the RMH to take a nap.
I washed several loads of clothes and I watched TV in the family room until I finished the laundry.

There was not much food left over from supper at the RMH by the time I finished the laundry. 
After supper, several families worked on making family scrapbooks, and Lora made one for Meadow.
Meadow started to get fussy, so I took her upstairs.
I put Meadow in the shower with me, I put on our pajamas and we crawled into bed.
Meadow fell asleep while I was watching a show about the migration of the caribou.

Day 8: January 8, Tuesday 2008 
Meadow is having one of her major surgeries today at 7:30 A.M. 
Lora and I were up at  4:30 A.M. We both took showers, fixed snacks, and packed our bags. 

We were not sure how long Meadows would have to stay in the hospital after her surgery, so we came prepared to stay.
Meadow was admitted to Lucile Packard Children’s Hospital and was sent to pre-opt, where they prepared Meadow for surgery. 

We prayed to God, to keep our little Meadow safe, and for God to guide the hands of  Doctor Steinberg, and his staff during Meadow’s surgery.

At 11:30 A.M., Meadow was still in surgery, Lora was on the computer, and I was writing in my journal. 
Ronald called to check on Meadow, I said she was still in surgery and that when I knew more I would call him back. 

I called Amelia on my cell phone and gave her the Meadows CaringBridge webpage. 

Lora and I went to the cafeteria for lunch where we split a grilled chicken sandwich and a slice of cheesecake pastry.  
The Baby Special is a website created by one of the mothers staying at the RMH, her son is on this site. 
We saw a little two-year oriental girl having a cast on her legs replaced, she was in pre-surgery.
The cask separated the little girl's legs, with a set of bars on her bottom, and the medicine that they gave her made her gag.

Some of the families that we met at the RMH were:
We met a fifteen-year-old girl, who was with her mother, who had spent the majority of her life in a wheelchair and now she was walking after she had a tumor removed from her back and brain.

We met a family from Oregon, they had just lost their seven-week-old daughter to kidney failure. 

We met a year-old named Loren, she had a heart transplant she was going everywhere with her walker and her parents were very pleased.

We met a seventeen-year-old girl named Kelly, her four-month-old daughter Lyla, Kelly’s mother, and Kelly’s grandmother they were from Louisiana. 

After Meadow's surgery she was put in PICU, her surgery started at 7:30 A.M. and was over by 2:00 P.M.

Meadow after her 1st surgery
The nurses checked Meadow’s blood pressure, it was 110 over 60, her pulse was 140, and her air saturation was 100.

By 3:10 P.M. Meadow was resting peacefully, so I walked to the parking deck to get our bags and my camera and I got wet doing that because it was raining.

When I returned, I called Marcus, Charity, Ronald, & hubby to let them know that Meadow had come through the surgery and was doing fine.

Meadow was resting in PICU, while Lora was reading her Harry Potter book Deathly Hollows, and I was writing in my journal. 

Meadow’s relief nurse was Tom and Yea Lin was her nurse for the night. 
At 3:30P.M. the nurses put Zantac into Meadow’s IV. 

Lora and I went to the cafeteria for supper, while Meadow was resting,
We each purchased a cup of vegetable soup and some butterscotch pudding. 
We took the elevator up to the third floor to the FYI room to check out a mobile, and a music box for Meadows to enjoy during her stay in the hospital.

Lora and I, checked out the family rooms for our sleeping arrangements that night.
Then we went back to stay with Meadow in the PICU, Meadow watched 30 minutes of Baby Einstein and she fell asleep at 10:30 P.M. 

Richard, Yea Lin's relief nurse, came to stay with Meadow while Yea Lin went to dinner.
I left the PICU room around 11:45 P.M.  
Lora stayed all night in the PICU room with Meadow. 
Deborah was Meadow’s night nurse after Yea Lin left.
I took two blankets with me back to the lobby where I slept.

Day 9: January 9, Wednesday 2008
I woke up at 5 A.M. and walked down the steps to the first floor to use the restroom.
At 7:30 I went to the cafeteria where I purchased two cream cheese pastries and a diet Coke. 
I walked back to the lobby to look for Lora, but  I could not find her anywhere.

I walked to the third floor; to the second floor, to the first floor, and I found her asleep in the lobby with her head covered up. 

Then I went to the PICU room to check on Meadow but they had taken her for an MRI to make sure the surgery from the day before had gone well.
I went back to the lobby and plugged my computer and my cell phone into the wall plugs to charge them.
My computer updated itself, I was about to connect to the Internet when the nurse came out and said Meadow was back in the PICU, so I shut down the computer and went back to stay with Meadow while Lora slept. 

Doctor Steinberg came in around 8:00 A.M. He said everything was clear and that she should not have any more strokes. 
Meadow was a little upset, so the nurse gave her some Tylenol with codeine to help her rest and relieve any pain. 
Day 2 after the first (Moya Moya surgery)
Doctor Steinberg said Meadow could have some Pedi-Sure, so the nurse started a drip into her G-Tube. 
With a belly full of Pedi-sure and some pain medicine Meadow fell asleep at 9:00 A.M.

Lora went back to the lobby to take a nap, for she had stayed up all night with Meadow.

The nurse who is staying with Meadow is from the state of Washington, she moved here so she could work at Stanford. 
Meadow is enjoying watching Aladdin and the Magical Lamp on DVD. 

Lora and I went to the RMH to take a shower and eat dinner.  We ate the chili with crackers and cinnamon crisps.
We took some clean clothes, popcorn, cokes, tea, and snacks to the hospital with us, we will be staying in the hospital until Meadow is released.

Meadow’s charge nurse is Jim Anders and when we got back to the hospital we asked Jim how Meadow was doing.
He said we will soon be taking Meadow out of PICU to the third floor.
He said that we the left central line in Meadow’s chest, because she will be having more surgery, and all the other tubing was removed.
Meadow was sleeping and her color looked good.

At 5:45 P.M. Meadow was taken to the third floor and given her own room.
She was not happy about being moved but she soon settled in and started playing with the three handheld toys her mother brought her from the family room.

An hour later Meadow was showing signs of getting sleepy. 

Lora was updating her CaringBridge website about Meadow’s condition and I updated my journal.
Meadow Beasley CaringBridge website
Meadow had a good day playing with her toys & at 10 P.M. Meadow’s nurse started a slow drip of Pedi-Sure and Meadow fell asleep.

I stayed in the room with Meadow, while Lora went to Walgreens, which was next door to the hospital, to get her medicine refilled, some cough drops, and some candy. 

Meadow was sharing a room with a little seven-week-old baby girl, she had surgery on her stomach and her mother was trying to breastfeed her. 

Meadow nurses are a woman named Travisa and a Mexican nurse named Alexandra called “Alex” for short. 

That night, Lora slept in Meadow’s room with her and I slept in the family room.
The family room was just two doors down the hall, from Meadow’s room.

Day 10: January 10, Thursday 2008, 
I was up at 7 A.M. PST, and Lora and Meadow were still sleeping. 
I dressed, put on my makeup, ate a protein bar, & cinnamon crisps, drank a Coke, and wrote in my journal. 
I went to check on Meadow at 9:45 A.M. and she was still asleep.

The infant in the room with Meadow was very fretful, she did not sleep very last night, and her mother was trying to nurse her. 
I walked three flights of stairs for exercise, and I am trying to stay in shape.

Meadow slept most of the day today, she was hooked up to her feeding pump and was receiving aspirin for pain. 
They will be keeping Meadow another day because she has been spitting up.

Meadow played with her toys and we watched the movie, Miss Potter, performed by Renee Zelwinger.
We also listened to the music and lyrics performed by Hugh Grant and Drew Barrymore. 
For lunch, Lora and I split a plate of turkey & dressing, cream potatoes, rolls, and an oatmeal cookie.

For supper, Lora and I split a vegetable sandwich that was made with shredded carrots, bean sprouts, numbers, and cream cheese on eight-grain bread.
We split a parfait with cantaloupes, mush melon, pineapple, granola, and grapes.
Meadow was moved at 10:30 P.M. from room 3735 south to room 3511 east, and I went to the parent's lounge to sleep.

Day 11: January 11, Friday 2008 
Meadow will be dismissed from Lucile Packard Children's Hospital later today.
I woke up at 7 A.M. and went to Meadow’s room.

At 8:00 A.M. Meadow was brought a tray of food for breakfast and from the tray, she ate some bacon and drank a half-pint of whole milk. 

After breakfast, Meadow was enjoying banging on a musical piano, that her mother had brought her from the family room. 

Lora went to Walgreens to pick up her medicine. 
A two-year-old named Iris is sharing a room with Meadow, she had her tonsils removed yesterday and she was not very happy, for she had cried all night long.

Iris called Meadow a baby, her parents brought her over to Meadow’s bed so, she could see Meadow.
Iris weighs 32 pounds, she looks a lot bigger than Meadow, but she isn’t.

Lora told the couple that Doctor Steinberg had performed Meadow’s surgery, and then she began describing why Meadow had the surgeries.

Iris’s father knew Doctor Steinberg because he works here at the hospital and Iris’s mother works downtown San Francisco. 
Iris was dismissed early that morning and when they left they told us goodbye.

Meadow was brought lunch, she nibbled on the grilled cheese and she drank some Pedi-Sure.
Meadow really did enjoy eating the Oreo cookies that I gave her and you could tell from the presence of black cookie crumbles that was plastered to her face and gown.


Meadow enjoying eating an Oreo cookie.
Doctor Kevin Chao came into Meadow’s room, and he removed the central line, from the left side of her chest, this made Meadow angry.
Meadow was dismissed, and we loaded a little red wagon with all our belongings, pulling it behind us.
Meadow was put into her wheelchair and wheeled to the lobby.
Lucile Packard Children’s Hospital has valet parking, so Lora gave the driver our parking ticket and keys.
 One of the hospital's drivers went to retrieve the car, and he pulled it in front of the hospital.

We loaded the car and Lora drove us to Target, where both Lora and I spent fifty dollars. 

We bought snacks, bread, cheese, kasha bars, cookies, donuts, soup, shampoo, and tissues. 

We all three got new pajamas, and Meadows Pajamas button down the front and they have
Cinderella and Belle Princess printed on them. 

We rode back to the RMH where both Lora and I ate a Greek Salad, and Meadow ate some chicken nuggets.
All this food was prepared at McDonald's and brought to the RMH for the people staying at the RMH.
The McDonald's in Palo Alto always brings food on Fridays.

I put three loads of clothes into the washer while, Lora walked to the front office of the RMH, to see if they had any free tickets and any information on places that we could go tomorrow. 

Lora and I both went to the computer room, where she printed out two pages of pictures for Meadows's scrapbook. 
Meadow went to sleep while sitting in her wheelchair, so I pushed her into the laundry room where I was folding clothes. 
I pushed Meadow back upstairs to our room, where Lora was updating Meadows's website.
I left Meadow with Lora and I went back to the laundry room to finish folding our clothes which were around 10:00 P.M.
I went to bed at at10:30 P.M.

Day 12: January 12 Saturday 2008, 
Meadow had a good night's sleep and she woke up at 6:00 A.M. with a sopping wet diaper.

I changed her diaper, and I fed her a can of Pedi-Sure then I put her back in the bed with us and we all slept until 9:00 A.M.
Trying to sleep with Meadow playing
I got up, took a shower, and went downstairs, to eat bread pudding with blackberry syrup. 

I went back upstairs to call hubby who was working overtime.
I called Charity and Becky neither one answered their phones.
I called Sue Gaston and gave her the Meadows CaringBridge website, where she and the other ladies at CBS could watch Lora’s daily posts. They were all praying for her.

The sound of the ringing telephone woke up Meadow and Lora and I cannot recall who it was.
Last night we stayed up until 12 A.M. talking to families that are staying at the RMH.
Lora talked to Sarah, she has a little girl about four months old, and her daughter has heart problems. They live in Jacksonville, Florida, and will be going home in a few days. 
I talked to a couple from Guam, their names are Andrew, Savannah, and Elijah Peter (Elijah has heart problems). 
We arrived at 3:00 P.M. at Happy Hollow Park in San Jose where I made a picture of Lora and Meadow standing in front of Danny the Green Dragon with a sign that read Happy Hollow Park and Zoo.

Meadow rode a dark miniature horse on the Keep-Around-Carousel when Lora and Meadow first got onto the horse Meadow was almost crying, but after the second round, she was laughing out loud.
Meadow and I rode the Keep-Around-Carousel, but I sat on a bench, holding Meadow tightly in my arms as we went around and around.


Riding the Keep-Around-Carousel
Riding the Keep-Around-Carousel
We stopped at the Opera House for a quick photo, Meadow was a gray cat and the little boy next to her was a black mouse, the little boy had dark brown and dark brown eyes just like Meadow.
Lora put her head inside the picture hole for a photo, her face was behind a wanted poster that read: Wanted $100.00 Reward and Meadow was in jail.

Next Meadow and Lora rode a large green turtle on the merry-go-round, Meadow did not want to get off the turtle.
By herself, Meadow rode the number six red mini putt, a one-child car, with a steering wheel that moved and a bell with a rope attached that could be pulled to make it ring.
This was truly a park where tots could have a day of fun.

After Meadow rode all the rides in the park we walked over to the Zoo.
We saw a pair of light brown Capybaras, which are the largest rodents in the world, a relative of the guinea pig.
We saw three tan meerkats who had pointed noses with black eyes, ears, and noses, he is a member of the mongoose family. 
Our next encounter was with a brown Miniature Donkey with a patch of white on his nose.
The next animal we met was the grayish Bull Dwarf Zebu, with a hump on his back like a camel, he is a breed of domestic cattle.
The next animal was the  Navajo Churro a white ram with a pair of horns that framed his face and the points faced outward to protect himself from his predator.
In the pen with the ram was a solid black Pygmy Goat. The goat, ram, and cow were all people-friendly.
We saw the Black-and-White Ruffled Lemur very similar to our common skunk, very beautiful. 
In the bird area, we saw the rainbow-colored Scarlet Macaw, Great Green Macaw, and Red Teal Duck, and the only reptile we saw was the African Spurred Tortoise, which looked like he was under a heat lamp.

We were going to walk through the China Garden but the gate was closed, but we did see some Bonsai trees.

We rode back to the RMH where Lora washed her clothes and  Meadow and I both fell asleep watching TV in the family room. 
When Lora was finished with the laundry we walked downstairs for a late-night snack. 
We sat up talking to other families that were staying at the RMH until 12:00 A.M.

Day 13: Sunday 13, January 2008, 
At 9:30 A.M. I went downstairs to the dining area to eat breakfast, I ate a half slice of cake and some kasha cereals.
Vanessa was in the dining room and we started talking, she said her husband and her two-year-old daughter were still in Japan, where her husband was stationed in the army.
She said I had to leave them to bring my son to the States for surgery on his heart.  

I walked back upstairs to call hubby who was again working overtime.
At 11:00 A.M, Lora put Meadow in the shower with her, she removed the bandage that covered the central line in Meadows's neck, which caused Meadow to cry out.
We went downstairs where Lora and I ate a piece of cheesecake, a half-cheese sandwich, and chips with salsa.
Meadow ate a few snacks and drank some juice. 
Santa Cruse Boardwalk and the Pacific Ocean
We left for Santa Cruze at 2:00 P.M.
We arrived at the Boardwalk in Santa Cruse where we walked along the boardwalk, and stopped to take pictures of the Prize Center, The Skeet Ball Center, Under the Rainbow, Marini’s at the beach, Casino’s Arcade, where inside was laser tag, prize center, food, and restrooms.
We saw a huge black spider, that was sitting on top of The Haunted Castle, also on the outside of the castle walls hung a weird clock, its hands were moving counterclockwise, and these hands pointed toward black Roman numerals. 

Next, we saw Fright Walk,  it is a walk-through attraction, where we saw two black, scary gargle statues, they were showing their teeth, perched on two columns near the entrance of the building to frighten off small children and the not-so-young or weak at heart.

We saw several empty red, blue, black, and green chair lifts traveling across the boardwalk. 
Lora purchased Marcus and Madison some souvenirs from the gift shop.

Lora and Meadow rode a horse on the 1911 Looff Carousel, their heads bounced up and down as the carousel went round and round.
Waiting to ride the Loof Carousel 
We saw the heart-pounding Giant Dipper, a white wooden roller coaster, with a handful of people sitting in blue seats, come bumbling down the tracks, only to be pulled back up.

Another ride we saw was The Fireball which has red and yellow mechanical arms, with six red extensions, each extension had four seats and the backs were covered in red and blue lights that lit up.
The mechanical arms that twist around and turn people upside down, were only half full of people because it was off-season at the park.

The Fireball
We walked through Neptune’s Kingdom which is a nautical-themed Buccaneer Bay two-story 18-hole miniature golf course.

It was off-season and many of the hot dogs, burgers, and pizza restaurants were closed.

After a jaw-dropping day of adventure, we rode back to Palo Alto where we enjoyed a night of dining at PF Chang Chinese Restaurant, an American Chinese chain restaurant.

While waiting to be seated, we were given a beeper, and both Lora and I went to the restroom for an adventure of our own.
I started to sit down on the toilet when I heard a splash and I said to Lora you will never guess what I just did. 
I had dropped the beeper that was in my back pocket into the toilet.
I retrieved the beeper, took it to the sink, washed it off, and turned it in when we were called to be seated.

I ordered fried chicken with rice and Lora ordered fried shrimp with rice and we had enough food left over to get a takeaway bag. 

At 6:00 P.M. rode back to the RMH, I called hubby took a shower, put pajamas on, dressed Meadow in her PJs, and put her in her crib to play.

Lora had gone to the computer room to print out some pictures for her scrapbook. 
At the RMH you are allowed to print two eight-by-ten pictures per day. 
I took some pictures on my cell phone so I could email them.


Lora was updating Meadow's CaringBridge website until 10:30 P.M.

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