SHAO-HAN DENG

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Liam (22months) and Shao-Shao (3 1/2), March 1998

3/19/98-Los Angeles Times article on Shao-Shao appears. Local and national media cover the story! NBC news crew is with us all day filming for broadcasts to be aired tomorrow. We hold press conference at the CCHC.

3/20/98- NBC "Today Show" airs a segment on Shao-Shao and the "NBC Nightly News" airs another segment! I get a call from NBC telling me that Mayor Riordan of Los Angeles and Fred Rosen of Ticketmaster have each pledged $25,000. I burst into tears. We are on our way! People care!

3/23/98-We learn that an anonymous donor wishes to pay the deposit to UCLA for the first surgery! More rejoicing!

4/02/98-We get a date for Shao-Shao's surgery at UCLA - April 14!

4/10/98-We meet with Dr. Laks at UCLA to discuss Shao-Shao's surgery. He informs us that Shao-Shao might need another surgery in 3 to 6 months. So, thank goodness we are still receiving donations! Then we meet with the play therapist to work with Sho-Sho about his surgery. NBC films the meetings and LA Times sends photographer. People from the church the Dengs are attending donate blood.

4/12/98-We have an Easter egg hunt for Shao-Shao and Liam at our house. NBC films this and does interviews with Yongxin and me. I move the Dengs to the hotel near UCLA in preparation for Sho-Sho's pre-op testing tomorrow.

4/13/98-Pre-op tests and exam for Shao-Shao today. He had to have bloodwork twice. He was not happy! Chest x-ray and EKG also done. Tomorrow is a go!

4/14/98-I pick up the Dengs and take them to UCLA for a 9 am check in at the admissions office. Shao-Shao's surgery gets bumped to 2nd case as Dr. Laks doesn't want to have to leave the OR after Shao-Shao to rush to another case in the event there are any complications. Shao-Shao is very thirsty and hungry! We do our best to play with him and distract him from thoughts of food or drink. He keeps saying things in Chinese which I ask Yongxin to translate. It's usually something about food! Finally around 2:30 anesthesia comes and sedates him and his parents have to turn him over to the doctors. A very hard and emotional moment. We hug and cry and then wait. Shao-Shao's surgery is a success! We get updates from the nurse and Dr. Laks comes to see us after surgery. Shao-Shao had no complications in the OR and is tolerating the PA(Pulmonary Artery) banding very well!!! We rejoice! It has been a day of media frenzy. NBC was with us throughout the day filming as well as an LA Times reporter and photographer. My beeper is constantly going off with reporters wanting interviews. Today Show, NBC Nightly News and lots of local news airs stories about Shao-Shao! It's been a long but wonderful day! We see Shao-Shao and he looks good!

4/15/98-Shao-Shao had a bit of a rough morning. They started to let him wake up and his pressures and heart rate eccelerated quite a bit. There was concern about whether the band was tight enough and talk of taking him back to the OR to tighten it. They decided to keep him quiet and very sedated. Word from Dr. Laks tonight is that he thinks that the banding is okay and doesn't need to be adjusted as of yet. They will continue to keep him quiet and watch for another 48 hours. We had a press conference at noon today at UCLA. TONS of press in attendance!!! Everybody wants to hear about the surgery and how Shao-Shao is doing. We are so blessed that so many people care! Today Show airs another segment.

4/16/97-Shao-Shao is extubated (off of the ventilator!) Everything looks pretty good. There is still talk of tightening the PA band, perhaps tomorrow or Saturday. Liam and I go to visit and Liam keeps blowing Shao-Shao kisses.

4/17/98-A VERY rough day for Shao-Shao and his parents! They decided to pull the PA line and gave him some platelets before doing so in case of bleeding. Shao-Shao had a terrible reaction to the platelets. His PA pressures went sky high and he spiked a very high fever - 40.5C. It was very scary. He went into respiratory distress and had to be re-intubated (put back on the ventilator). As of tonight he is stable again, thank God!!! Poor little guy! Still talk of taking him back to the OR tomorrow.

4/18/98-A relatively calm day today. They are keeping Shao-Shao very sedated and mostly sleeping. He did get quite agitated this morning when they did a chest x-ray and his pressures shot up. The plan seems to be to keep him quiet for a few days. Dr. Alejos (the PC - Pediatric Cardiologist) informed me that they would definitely tighten the PA band before Shao-Shao was released from the hospital. His oxygen staurations are in the 90's and they would like them to be around 80. Many folks have been bringing little gifts to Shao-Shao. Someone from Disney came and brought a whole bag of goodies - Mickey and Minnie dolls, t-shirts, hat, videos, etc.. It was so wonderful, I almost cried!

4/19/98-Shao-Shao's PA line, RA line and chest tube were all removed today and he is extubated again (off the ventilator)! I spoke with Dr. Laks tonight while visiting and he said that he doesn't feel that Shao-Shao needs to go back to surgery to have the band tightened! Hurray! If the night is calm them Shao-Shao will be allowed clear liquids in the morning. A happy day today!

4/20/98-Shao-Shao was moved to the Pediatric Floor today!!! He also was allowed to eat this afternoon. Yongxin says that all day long Shao-Shao was saying in Chinese things about food! He was very hungry. Things are looking very good for his release from the hospital soon.Life is good!

4/21/98-Shao-Shao is still very weak and cannot walk yet but his appetite is pretty good. If he continues to eat well, he will be released tomorrow. Can you believe it? What an amazing little boy he is! The Dengs will stay with Shao-Shao at the hotel down the street from the hospital for a few days after Shao-Shao's release. They are feeling very nervous about being too far away from the hospital. Where they are living is a good hour from UCLA (and they don't know how to drive, so rely on rides from others) so I agree with them to stay around UCLA for a few days. Dr. Alejos says that they will do a heart catheterization in about 3 months to see how Shao-Shao's pressures and saturations are doing. We will hold a press conference tomorrow at UCLA if the release is still a "go"!

4/22/98-Shao-Shao is released from the hospital today! He has an echo before his release and everyone agrees that the banding looks perfect! I go to the hospital, we have a press conference and then I take them to the hotel. I got Shao-Shao to laugh and smile by singing silly songs and dancing around the room! No words can express the joy of this child doing so well and being given a chance at life! We hope that the atricle in the CCHC publication will bring in more funds for Shao-Shao's expenses.

4/23/98-Shao-han is still very weak and hasn't eaten or drinken much today. Yongxin calls me a bit worried. I page Dr. Alejos and speak with him. The Dengs are instructed to give him plenty of fluids and to "spoil" him with any foods that he may want. I told them that if they are still real concerned tomorrow to take Shao-Shao to UCLA for Dr. ALejos to check out.

4/28/98-Shao-Shao had his first post-op check up today and everything looks great! They removed a stitch from where his chest tube was. The blood pressure meds seem to be working great as his BP was excellent! He is to return May 13th for his next check up. Tomorrow the Dengs will go back to Simi Valley. After the appointment I take them to visit an elderly lady in Santa Monica who has offered her home to the Dengs. She says that she would love for them to come and live with her. They might do it!

4/30/98-The Dengs move in with the lady in Santa Monica!

5/1/98-Yongxin tells me that Shao-Shao is very different now (since surgery). He says that Shao-Shao isn't nearly as moody or fussy and is much happier and has more energy! Isn't that wonderful?!!! He says that Shao-Shao is doing beautifully.

5/14/98-Shao-Shao has another check up with the PC today. They do another echo. Everything looks great and he doesn't need to go back until July. At that time, they will arrange another heart catheterization to see if his pressures have come down enough to do the next surgery - the Glenn.

5/30/98-The Dengs move in to a guest house about 10 minutes from us. The woman who owns it is a single mom who adopted a baby from China. Her daughter is now 4, Shao Shao's age. It's a wonderful situation for them. They are so close to us and now Shao-Shao has a playmate!

6/04/98-NBC comes to the Dengs new home and films an update story on Shao-Shao.

6/19/98-Liam has his third heart surgery at UCLA. The Dengs take the bus (a 2 hour trip!) to visit us every day. What wonderful friends we have in them! If Liam cries then Shao-Shao gets upset too! He loves Liam so.

6/25/98-Reader's Digest contacts us and interviews the Dengs today.

6/27/98-Reader's Digest comes to my home to interview me. The story should be published in their November issue.

6/29/98-NBC's Today Show airs today with the update.

7/3 and 7/4/98-Reader's Digest sends out a photographer to shoot the Dengs and Liam and me. Liam was not too cooperative. Poor little guy. It's only been a few weeks since his surgery. I'd be grumpy too! We take the Dengs to see a 4th of July fireworks display. It was great fun!

7/7/98-Shao-Shao has his cath today. We receive wonderful news. He is eligible for the Glenn. Our long, hard work is paying off! I could hardly contain myself today at UCLA when Dr. Alejos came out after doing the cath. I said, "Well???? Tell me!" We are all so elated!

7/14/98-Dr. Alejos calls me today and says that they have decided that they want to go back in to tighten Shao-Shao's PA banding and they want to do it next week! It is disappointing as this means another surgery for Shao-Shao but we are still very happy that Shao-han's pressures are so close to where they need to be to be eligible for the Glenn. They want his pressure down a bit more before attempting the Glenn and we all want what is safest for Shao-Shao.

7/22/98-We are shocked and stunned!!!!! The nurse comes to give us our 2nd update on how Shao-Shao is doing in surgery and tells us that Dr. Laks wants to go ahead with the Glenn! Dan and I begin crying and Yongxin's mouth is down around his knees! This is such a miracle! When Dr. Laks got in there the pressures were much lower than was thought so Shao-Shao now has the Glenn. This is the child who was supposedly inoperable and would never be eligible for this surgery. Our hearts our singing to the heavens with joy!

7/23/98-Shao-Shao is extubated today! Can you believe it?

7/24/98-We have a press conference today at UCLA. Shao-Shao once again is a media star!

7/29/98-Shao-Shao is released from the hospital today. He is amazing! There is some concern about pericardial effusions so they did an echo before releasing him today and want him back on Friday to do another. His face is still pretty swollen which is fairly common with the Glenn surgery as the upper half of your body's blood has been re-routed. Now instead of returning to the heart to be pumped to the lungs to get oxygenated the blood goes directly to the lungs, bypassing the heart. Thus, half of the work load on the heart is reduced.

8/10/98-Shao-Shao is four years old today! We bought him a really cool little bicycle with training wheels. He loves it. We'll have a party for him on Saturday.

8/15/98-We had a birthday party for Shao-Shao today. It was lots of fun and he got lots of goodies!

9/05/98-Yongxin goes with me to the airport to pick up Yehong and baby Shu-tong, arriving from China. Please read more about Tong-Tong.

9/10/98-Shao-Shao started pre-school today! He loves it and already has a little girlfriend! :-) He asked her to give him "five" and when she did he grabbed her hand. (He had wanted to hold hands with her but was too shy to try!) Too cute. What a clever little guy!

9/14/98-Yongxin goes with me to take the Hao family to the hospital for Tong-Tong's cath. The Dengs have been so wonderful in helping me with this new family!!! Aside from serving as my interpretor, they have been cooking meals and doing all sorts of things for the Haos. Yongxin has been sleeping at the terrible motel where the Haos are staying so that the mom and baby can stay with Dan and Shao-Shao. What wonderful people these are!

9/16/98-Police officers from the LAPD came to visit Shao-Shao and his family today. Lots of press were there. They showed up in 2 patrol cars and brought a huge bouquet of balloons and toys and household items for the family. It was so wonderful! They had even taken up a donation for the family. Seeing our community reach out like this brought tears to me eyes. They gave Shao-Shao a ride in the police car, let him push the lights and siren and then took him to school. What a wonderful day!

9/18/98-Shao-Shao had a PC appointment today and they did another echo. His tricuspid valve is still leaking significantly. They want to do a cath at the end of October and then decide what and when his next surgery will be. They are talking about surgery at the end of November.

10/12/98-I just read the Reader's Digest article online. It is great! To read it go to http://www.readersdigest1.com/rdmagazine/specfeat/archives/angelsontheinternet.htm

10/30/98-We found out today that Shao-Shao's next heart catheterization will be on November 24th at UCLA. They will check his tricuspid valve and the thickening of his ventricle. If things aren't much improved then he will probably have open heart surgery the following week. They will tighten the tricuspid valve and do the "Stansel" procedure. Let's hope and pray that surgery can wait until spring!

10/31/98-Shao Shao experienced his first Halloween! He dressed as Simba from The Lion King and Liam was Winnie the Pooh. We took them around the neighborhood trick or treating. They both loved it! Shao Shao got very bold near the end of the evening, knocking on doors himself and saying "trick or treat!". It was so cute!

11/20/98-The LAPD (Police)came out to Shao-Shao's house again today and brought more goodies! They brought Shao-Shao a big truck, some little cars, a really cute outfit and lots of household goods. What sweethearts! They even brought several boxs of things for Shu-tong's family. The officers have seemed to have "adopted" little Shao-Shao. They certainly have hearts of gold! Some press was there to cover this as well!

11/21/98-A very sweet article was in the LA Times today about the police visiting Shao-Shao. There was a great photo of Shao-Shao and Officer Marjan Mobasser, the wonderful woman who keeps organizing these acts of kindness!

11/24/98-An "attempt" was made today to do another heart catheterization on Shao-Shao. I say an attempt for it was not successful. They decided to intubate (put him on the ventilator) to do the cath because they wanted to go in through the neck as well as the groin. Well, Shao-Shao had a very bad allergic reaction to the anesthesia which caused his muscles to stiffen, his mouth to clamp down and very bad swelling. They had to abort the cath attempt and instead did another echo. Quite scary!!! They feel they got the needed info from the echo which does show his tricuspid valve to be leaking significantly and surgery will probably be in January. The surgeon, Dr. Laks, will be consulted and I'll post when I know more. Shao-Shao is doing fine now. He had some blood in his urine the day of the cath but is now showing no ill effects! Bless his little heart! Media was present again today and the police also went to visit Shu-tong and her family in the ICU.

12/03/98-UCLA called me today and said that the police want to give the Dengs MORE things! Can you believe it? They will give them a TV and more canned goods.

12/15/98-I talked with Dr. Alejos today and he said that they want to try to do another cath on Shao Shao in January so that they can get his Pulmonary pressures and then they will decide on a date for surgery. This time they will not attempt to intubate him for the cath!

12/19/98-Officer Marjan from the LAPD and another officer visited the Dengs today and brought Christmas presents for Shao Shao and more food for the family. I just can't get over this outpouring of love!

12/22/98-Our Pediatrician's office came over to the Dengs today and brought a darling Christmas tree (complete with handmade ornaments) and presents for Shao Shao. They also brought them a complete turkey dinner. What angels!

12/25/98-We brought the Deng and Hao families over to our home this evening to celebrate Christmas. We had gifts for the children and the families. The children loved their gifts, we fixed a lovely meal and had such a nice evening!

1/19/99-UCLA called today to say that Shao Shao's next heart catheterization would be on February 1. His parents are nervous because of the complications last time but Shao Shao will not be intubated this time. Please keep him in your prayers for a successful and uncomplicated cath!

2/1/99-Shao Shao had his cath today and all went well with no complications this time. He was intubated but they took extra precautions because of what happened last time. His Glenn is working very well with his PA pressures 16-18 which is pretty good! His sats are in the 80's. His tricuspid valve is still leaking quite a bit but the PC doesn't think that this has to be addressed immediately! The surgeon, Dr. Laks, will be consulted with and we will discuss it further. All in all the cardiologist was quite pleased with Shao Shao's condition and progress. We are all so very happy!

3/16/99-Shao Shao continues to do so well. He,Liam and Tong Tong (our 3 heart kids!) all play together so very well. They are too cute! I will scan a photo of the 3 of them together and add it to the site soon. Shao Shao is slowly gaining weight and is quite a happy child. We are still waiting to see what the next step will be.

3/23/99-We got Liam's cath and surgery dates today. Liam will have a heart cath on 4/14 and his final repair surgery on 6/2. Please keep him in your prayers. We are still waiting to see when Shao Shao's next surgery will be. It's great to have the Deng family to share my worries and concerns with!

3/27/99-I got an e-mail from Shao Shao's PC, Dr. Alejos, saying that they conferenced Shao Shao's heart cath and they feel that "it's now time for his next surgery"! Boy, was this a surprise. I am not sure what "now" means. I should hear from him any day to clarify this. Now Liam and Shao Shao will both be having surgery soon. When it rains it pours! They want to fix Shao Shao's leaky tricuspid valve, cut away the foramen obstructing his aorta and do an atrial septectomy. It will be a very big surgery for both of our boys! Say prayers, please!

4/9/99-We know have a surgery date for Shao Shao. His surgery will be on May 11th at UCLA. This is exactly 3 weeks before Liam's surgery. We are trying to brace ourselves for the stress of the next few months. We'll meet with Dr. Laks soon to discuss exactly what will be done during this surgery.

4/30/99-Liam had his heart catheterization today and all went pretty well! We will give him a few days of rest then he'll get to play with his buddy Shao Shao again. They really love each other now and play very well together. It is so sweet to watch them together! We are all starting to get nervous about both boys surgeries!

5/8/99- Liam turned 3 years old on the 6th but we had his party today! Everyone had such a good time - especially Shao Shao. He played so well with the other children. Liam was too adorable for words when we all sang happy birthday to him. I love my angel so much!!!

5/9/99-Shao Shao is showing signs of a cold today! I guess he picked up something from one of the kids at the party! :-( We hope his recovery is quick as they want to do another heart cath before his next surgery on the 25th. They found some collateral vessels that they want to try to close with coils. It's much easier to address these during a cath than during surgery. I'll post when we get the date for Shao Shao's cath!

5/11/99-Shao Shao's surgery has been postponed until May 25th. We did this for several reasons. One big one being that we don't have enough money for this surgery! So, it's back to the ol' fundraising and phone calls again! I have faith that this will all work out and that we will be able to get enough money together for Shao Shao to have his surgery at UCLA. We will meet with Dr. Laks on May 21st to discuss Shao Shao and Liam's surgeries. Since Shao Shao's surgery is just 8 days before Liam's, I have a feeling that they will be in the hospital at the same time for at least a few days. Please pray and send good thoughts to both our families!

5/18/99-We will meet with Dr. Laks early tomorrow morning to discuss Shao Shao's surgery (rescheduled from 5/21). We will meet with him on 5/26 to discuss Liam's surgery. Shao Shao is still showing some signs of having a cold so we hope that this will totally clear up by next week. We now know that they will do a heart catheterization the day before Shao Shao's surgery, 5/24, to coil some collaterals that they saw in his last cath. He'll have all of his pre-op testing done the same day as the cath. I'll keep this site updated!

5/19/99-We met with Dr. Laks and discussed Shao Shao's surgery this morning. It is a big surgery and considered pretty risky. It was hard hearing all of the possible complications, etc... He said that the surgery has a 6-8% risk factor. Shao Shao will be on bypass (heart/lung machine) for about 1 - 1 1/2 hours. Dr. Laks was concerned about some mosquito bites that Shao Shao has so they will have to be sure that he doesn't scratch them. If any of them open up then the surgery would be postponed. They will try to fix the leaky tricuspid valve and if that doesn't work then they will close the valve and then open up a hole between the atria. They will also remove an obstruction near his aorta. Shao Shao's cath will be on May 24th, the day before surgery.

5/24/99-Shao Shao had his cath today and they coiled four collaterals. They actually found more than that but felt that the remaining collaterals would be okay after this next surgery. He had no problems with the anesthesia this time, thank goodness! Some officers from the LA Police came to visit him before the cath this morning and there were a few press people there. He did run some fever tonight so they decided to postpone the surgery. Dr. Laks isn't comfortable proceeding because of this. They will let us know the new surgery date.

5/26/99-We met with Dr. Laks to discuss Liam's surgery. I am so scared but I have faith that Liam will do well. He will be on bypass for 1 1/2 - 2 hours, even longer than Shao Shao. This is a very stressful and scary time for all of us.

5/30/99-Well, we still have no set date for Shao Shao. They will try to fit him into the schedule this next week. Liam's surgery is this Wednesday, June 2nd. Please, please pray for my little angel and pray for me to have strength to support Shao Shao's family if his surgery ends up being this week as well. There is talk of Shao Shao's surgery being on June 8th or 10th. Since we will be in the hospital with Liam, I don't know when I'll be able to update about Shao Shao or Liam but will do so as soon as I can. Thank you for your prayers and support!

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