Shao-han Deng

SHAO-HAN DENG

heartline

Shao-Han Sept.'99

Shao-Han at a So. California Heart family gathering, September 1999

heartline

Please forgive me for the delay in updating this site. Our son, Liam, ended up being in Intensive Care for 13 weeks with this last surgery. I never came home during that time nor used the computer. It was an incredibly hard time for us and Liam ended up having a tracheostomy and coming home with a ventilator. He is currently doing well at home and has excellent home nursing. It has taken us all quite a while to recover from this unbelieveable ordeal. We feel so blessed to have our angel back home again. The Deng family would take the bus to visit us at the hospital during the summer and during this time Shao Shao had his 3rd surgery. Thank you for your prayers!

Shao Shao and Liam - Sept.'99

Buddies - Shao Shao and Liam

heartline

UPDATES - page 2

1/30/05

Shao Shao is now 10 years old and has been doing beautifully. He is in the 5th grade and is in a class for gifted children as he is extremely intelligent. He is so mature for his age. His big dream right now is to save enough money for a lap top computer! On Friday 2/04/05 he will have another heart catheterization. His oxygen level is pretty low - low to mid 70's - and the doctors think that they might be able to do some things to improve that. Shao Shao is so polite, mature and happy. He continues to amaze us!

heartline

6/02/99-Liam has his "final repair" open heart surgery today and the Dengs come to UCLA to wait with us. Shao Shao and Liam play until the anesthesiologists came to give Liam sedation and take him to the OR. We all shed lots of tears after handing over our sweet boy. Liam was on bypass for about 2 1/2 hours and all went pretty smoothly.

6/04/99-We extubate Liam today but after 45 minutes he has to be reintubated. He was struggling so hard to breathe. It was horrible. We will try again in a few days.

6/07/99-Liam is extubated again today and only lasts about 1 hour and 15 minutes this time before having to be reintubated. We do a fleuroscopy of his lungs and discover that the phrenic nerve that controls his right diaphragm was damaged in the surgery. His left diaphragm was paralyzed then plicated (surgically tacked down) after his first surgery as an infant. This now means that neither of his diaphragms are working properly. The pulmonologist tells us that Liam will probably need to have a tracheotomy and be on a ventilator for months and months but he feels Liam will eventually be able to breathe on is own. We are devastated.

6/15/99-Liam is moved to the Peds ICU because they need the bed space in the CT ICU. Bill and/or I are with Liam around the clock. Bill stays throughout the night and I come around 9 am and leave about 1 am each day. We have a hotel room across the street from the hospital and take turns sleeping there.

6/30/99-Shao Shao has his 3rd heart surgery today and things go very well! They are calling it a "modified" Stansel. Dr. Laks fixed his leaking Tricuspid valve and cut away the blockage in front of his aorta (bulbular ventricular foramen). Bill stays with Liam this morning so that I can go down to the pre-op room and be with the Dengs and Shao Shao until he is taken to surgery. Once again tears are shed as Shao Shao is taken from us and heads to surgery. Thank goodness all is well!

7/1/99-Shao Shao is successfully extubated today!

7/2/99-Today Shao Shao is moved out of the CT ICU and down to the Pediatric floor. His room is just right down from the hall from the Peds ICU where we are. We can't believe he is already on the floor! Amazing!

7/5/99-Shao Shao goes home today - just 5 days after his open heart surgery. We are so happy for them and at the same time a bit jealous as Liam has been here over a month now.

7/22/99-Shao Shao had his first post op check up with the Ped Card today. He is doing fine except that his sats have been lower since this latest surgery. Before the surgery they were low to mid 80's and now they are mid 70's. He also tires more easily than he used to. Definitely something I need to speak to the PC about.

7/29/99-The LAPD throw a little party for Shao Shao and Tong Tong at the police station. They got to see the police helicopters and Shao Shao even rode on a police horse! Both children received lots of gifts from the police officers. Once again, Officer Marjan Mobasser organized this great day!

8/6/99-The Dengs move into my brother's house (only a few miles from our house!). My brother is planning on being in and out of town a lot over the next 6 months and will pay the Dengs to live at his house and take care of the yard, etc... They are quite excited as his house is huge and they have been living in a one room little guest house. There is a computer there for Yongxin to use and he can get online to job hunt and send out resumes. As money is quite tight, this should be a big help!

8/11/99-Today is Shao Shao's 5th birthday! We're still in the hospital so we can't celebrate with him but we wish him a very happy birthday!

8/13/99-Liam goes back to the OR today for his tracheotomy. We are nervous and sad that this has to be done to him but we must get him out of this hospital and home so that he has some kind of life other than laying in a hospital bed! The surgery goes very smoothly with no complications. The Deng and Hao families come to be with us while we wait in the surgical waiting area. Later, the Dengs take Shao Shao for another check up with the PC.

8/31/99-Liam is released from the hospital today and we get to go home. One of the home nurses comes to the hospital to help us with the move back home. Liam is so excited when we get to the parking lot and he sees my car. He starts kicking and bouncing up and down. He smiles and hugs me the whole way home!

9/7/99-Shao Shao begins Kindergarten today and loves it! I am so happy that he is in school!

10/9/99-Liam and I go over to my brother's house to visit the Dengs. Yehong and Tong Tong come too. It is so wonderful to see Liam, Shao Shao and Tong Tong playing together once again. It is the first time since before Liam's surgery that they have been able to do this!

10/18/99-A producer from a TV show called "It's a Miracle" is interested in doing a segment on Shao Shao's story. We welcome opportunities to let the public know about how prevalent congenital heart defects are. Also it's important for people to realize how many children are in need of surgery and can't receive any due to financial burdens or just lack of technology in their own country.

10/27/99-Shao Shao and Liam are both excited about Halloween. They will be characters from "Toy Story". Shao Shao will be "Buzz" and Liam will be "Woody". The Dengs will come to our house and we will take the kids trick or treating in our neighborhood. What fun!

11/24/99-Once again the LAPD comes through for the Deng Family! They came over and brought lots of food and goodies for Thanksgiving!

12/10/99-A very horrifing and scary day today! Dan, Shao Shao's mom was hit by a car today while riding a bicycle. She was taken by ambulance to a local hospital. By the grace of God, she is okay but badly brusied, head concussion and lots of bad abrasions. When I raced to the ER and saw her, I almost passed out. The police informed me that the man who hit her is at fault and thank goodness he has insurance. Poor thing. I picked Shao Shao up at school and took him to the hospital to visit his mom then brought him back to the house to play with Liam until the hospital released her. Please say prayers for her quick recovery.

12/22/99-Dan continues a very slow recovery. She gets nauseated and very dizzy anytime she tries to walk and the doctor has ordered complete bedrest for her. The odcs say it's a miracle that she wasn't more seriously injured. She is also being seen by a neuroligst to assess her head trauma.

12/23/99-Shao Shao and Liam's pedicatrician's office came to the Dengs and brought them a very cute Xmas tree and lots of toys for Shao Shao for Xmas. How sweet!

12/25/99-The LAPD made a Xmas visit bearing gifts for Shao Shao. Our family went over in the afternoon and visited with the Dengs for a while as well. Dan is looking better but still feeling pretty miserable!

1/30/00-Shao Shao has a bad stomach flu - vomiting, etc... Poor little guy!

2/4/00-Shao Shao has recovered from that bad bug and is back in Kindergarten. Dan continues her slow recovery. They will be with us tonight to watch the "It's A Miracle" show which is airing the story of me helping to bring Shao Shao to the US!

3/15/00-Shao Shao saw Dr. Alejos, the PC, today. He thinks that Shao Shao is doing well but that it's time in the next few months to do another heart cath to check pressures and see how Shao Shao's heart is doing. Shao Shao has a lot of veins sticking out on his chest and the doc says that these are veinous collaterals. These collaterals are one of the reasons that Shao Shao's sats are lower - mid 70's. Alejos is a bit nervous about doing another surgery for he says that Shao Shao has done so well thus far that his concern is that his "Luck" will take a turn and that the next surgery just might be too high of a risk. It all depends on what the pressures are in his pulmonaries with this next cath. Please pray that the pressure is low!

3/22/00-Yongxin, Shao Shao's dad, just got a letter of acceptance to the PhD program at USC!!!! We are all so elated. They have offered him a 2 year fellowship and a 3 year assistantship. He'll be able to get a student visa now! Rejoicing here!

3/28/00-We will go to visit the Dengs today. Liam misses Shao Shao so much! Liam has had a cold these past 2 weeks so I wanted to keep him away from Shao Shao. Liam is now 4 weeks off of the ventilator and we are delighted! We will start downsizing Liam's trach this week and hopefully in May or June the trach can be removed and our little guy will be able to speak normally again!

4/3/00-The Dengs and I fly to Chicago today to appear on the "Oprah" show. I am so excited about getting the word out about CHDs and hope it will be a great avenue to raise some more funds! Shao Shao is very excited about riding on the airplane and insists on sitting with me. His mom and dad were a few rows behind us. I ordered oxygen for him for the flight but he really didn't need it. A limo picked us up at the airport and the Dengs were so impressed - having never been in one before. The hotel in Chicago is very nice and Shao Shao loves it! We had a wonderful dinner (courtesy of the show) and took a walk around downtown Chicago. I miss Liam but they wouldn't pay for him to come. :-(

4/4/00-We taped the show today and Oprah seemed to really take a shine to Shao Shao. At the end of the show she picked him up and left the studio with him! We all got to meet Mary Anne for the first time. She is the woman who helped me bring the Deng family here from China. She did not know that we would be here. It was a very teary reunion. We got to visit a bit after the show then flew back to LA.

4/10/00-The Oprah show aired today and was a huge disappointment to me. They edited out all information I gave about CHDs and also everything about my organization. I was soooo upset. I feel like they lied to me to get me on the show. They kept telling me how we would be discussing Little Hearts on the Mend. What a terrible letdown this was. I called them and told them how I felt.

5/2/00-Shao Shao had another heart cath today at UCLA. We were hoping that his pulmonary pressures would be low enough to make him eligible for the next surgery - the Fontan. His pressures had come down considerably to 15 but still a bit too high and the docs felt that it was still too risky to move ahead. They will probably check him again next summer to see if the pressure has come down some more. They like the PA pressure to be around 12. So, there is still great hope that Shao Shao will be able to have the Fontan. This gives me more time to keep raising money!

5/19/00-Liam has his trach removed today!!!! Yipeee! The Dengs take the bus to UCLA to visit us in the ICU. We are so elated that our little guy will now be able to speak again! He was so happy to see Shao Shao.

6/22/00-Shao Shao graduated Kindergarten today!

7/4/00-The Dengs go into Hollywood today in hopes of catching glimpses of the firework show at the Hollywood Bowl. The Bowl is sold out but one of the managers at the Bowl sees them and ends up giving them one of the most expensive boxes at the Bowl to see the show and fireworks (would cost about $750!). They loved it and had a great time!

8/10/00-Shao Shao turns 6 years old today! We had a little party for him at my brother's house. He got lots of cool presents! He continues to do well - growing and gaining weight.

9/3/00-We are concerned as Shao Shao seems to be doing some strange tic like behavior with his eyes and head. We are concerned about possible neurological damage. We take him to the pediatrician and discover that he has almost no vision in his right eye! We are not sure if this is the cause of the strange head and eye movements so we will take him to a neurologist and optomologist.

10/22/00-Shao Shao now is wearing glasses! He looks so cute! The optomologist thinks that the strange behavior is just a bad habit and not neurological (which a neurologist later confirms!) Shao Shao has to wear a patch on his good eye so that the weak eye will work better.

12/10/00-Shao Shao has made incredible progress with his eyesight and doesn't have to wear the patch any longer. He will probably always need the glasses though.

1/24/01-Shao Shao's 1st grade teacher says that he is her best math student! He has received an academic achievement award and is so proud! Shao Shao just loves school!

2/14/01-UCLA has it's Congenital Heart Defect Awareness Day celebration today! Liam and Shao Shao have so much fun playing together! They haven't seen each other in 5 weeks!!! I just found out that I'm pregnant!!! We are praying for a healthy baby!!!

Little Hearts on the Mend

chd day

For more information, please write:

e-mail
lilhearts@earthlink.net

Brenda Isaacs-Booth

bless your heart

Your tax-deductible donations can be sent to:
The Heart of a Child Foundation - Little Hearts on the Mend
26710 Fond Du Lac Road
Rancho Palos Verdes, CA 90275
please note on your donation: Shao Shao Fund

Please visit their website at www.heartofachild.org

Home
BACK TO LIAM'S HEART PAGE

This page created and maintained by Brenda Isaacs-Booth

You are visitor since October 10, 1999

Grandma's Graphics