SHU-TONG HAO

update1/30/05

- In June it will be FOUR years since Tong Tong had her heart transplant. She is doing beautifully. Tong Tong is in the 3rd grade and is amazingly smart! She has grown into such a little lady! I saw her here in LA in July when she was here for a heart biopsy and then again in Texas in August. What a joy to be around this vibrant child. A true miracle!!!

2/17/01

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 Hao family would take the bus to visit us at the hospital during the summer and during this time Tong Tong had another heart catheterization. Thank you for your prayers!

UPDATES - PAGE 2

6/02/99- The Hao family along with the Dengs come to UCLA to be with us as Liam undergoes his 4th heart surgery. It is so wonderful to have the support of both of these families!

6/04/99- The Hao family moves to the Ronald McDonald House. It is much more economical for them but they are quite a bit farther away from us and the Dengs. It will be a wonderful environment for Tong Tong as there will be a lot of children there for her to play with. It should also really help her learn English!

7/14/99- Frost gets a job and moves to Dallas! The company he will work for will help him to get a working visa! He will come back for Tong Tong's next surgery and then after her recovery, Tong Tong and Yehong will join him in Dallas.

8/10/99- Tong Tong has another heart cath today. As we are still in the ICU with Liam, I periodically run down to the surgical waiting area to hear updates. All goes very well with her cath. Her PA pressures are still a bit too high for the Glenn :-( The PA pressure is 28 and it needs to be around 20 so we don't know if Dr. Laks will just tighten her PA band or do that and the Glenn surgery at the same time. We are praying that he can do the latter.

8/30/99- Tong Tong walks alone for the first time!!! We are all so excited. Frost and Yehong wondered if they would ever see their precious daughter walk. The day has come!!!

8/31/99- Liam is FINALLY released from UCLA and we go home!!!

9/05/99- We hear that Dr. Laks will do the PA band tightening and the Glenn at the same time! Halleluah!

10/13/99- Tong Tong has a sedated echo done today. Dan and Shao Shao go with Yehong and her to UCLA for this. We don't know the results yet. Will post when I hear. Liam is having a lot of seperation anxiety so it's hard for me to leave him!

10/20/99- Well, the echo results are still indicating that Tong Tong's PA pressures are higher than they would like. Surgery is scheduled for November. We are keeping our fingers crossed!

11/8/99 - Dr. Alejos calls me today and says that they have decided to postpone Tong Tong's surgery. They want her to grow and gain more weight so that the PA band will tighten on it's own. They are scared that if they surgically try to tighten the banding,her oxygen sats will end up being too low or that when they get in there the band just won't be able to be tightened any further. We are all quite disappointed but realize that they are trying to do what is safest for her. It would be horrible for them to do a surgery and find once they got in, that nothing could or should be done at this time. Dr. Alejos wants to see Tong Tong this next week and evaluate her and talk about her diet.

11/15/99- Tong Tong saw Dr. Alejos today and they discussed why the surgery was postponed and the importance of Tong Tong to gain weight. He wants her to drink more Pediasure and to see a nutritionist. He said that they would like to wait 6 months and do another heart cath to see if her PA pressures have come down enough for the Glenn surgery. Please pray that they do!

12/10/99- Yehong and Tong Tong come over to our house tonight for a farewell party. They will move to Dallas tomorrow to join Frost there. Shao Shao and his mom join us. We give Tong Tong her Christmas gifts and we all shed a few tears as we will miss them greatly!

1/09/00- Tong Tong visits her new PC in Dallas today. I found a wonderful PC for her through the internet parent CHD support group. There is concern because Tong Tong looks bluer than she used to. An exam and echo is done. Her sats in the office are 80-82 - not bad - and the echo shows that her heart is doing pretty good.

1/11/00- Tong Tong has blood work done today to check her hematocrit and hemoglobin. The PC called me from Dallas, concerned because Tong Tong's is pretty high - crit is 58. I call Dr. Alejos and he says to do another H & H in one month to see if it is the same or continuing to increase. He theorizes that because Tong Tong is now more active from starting to walk, that she is bluer and therefore her body is creating more red blood cells. Let's hope and pray that it has stabalized and will not climb any higher.

2/02/00- Talked to Frost today. Tong Tong is doing well and her English is getting so good! She continues to have her pacemaker checks via phone with UCLA as it is much cheaper than having it done in Dallas. They are nervous about the cost of all of the recent tests and very scared that Tong Tong won't be eligible for the Glenn. I try to comfort them. I am still continuing to try to raise money for her and have faith that we will be able to cover all of her medical expenses.

3/28/00- We have decided to put Tong Tong in the hospital to have a feeding tube, NG tube in the nose, inserted. She is just not eating and hasn't gained any weight in almost a year. We must put some weight on her to help the PA banding tighten and hopefully lower the pressures in her heart. This will mean an overnight stay in the hospital, training for her paretns on how to feed her with the tube and use the feeding pump at hom, etc... It will be quite costly not only for the hospitalization for this procedure but for the monthly fees for the feeding equipment for home. Once again, I have to have faith that the money WILL come! Say prayers that Tong Tong tolerates the tube. If she does not, then we will have to have a feeding tube surgically placed in her tummy.

5/15/00- Tong Tong now has her feeding tube and Yehong tells me that she is adjusting well to it. They ended up giving her an NJ tube instead of an NG. An NJ tube goes through the nose and down into the intestines as opposed to the stomach. This will help her not to throw up.

7/10/00- Tong Tong is gaining weight well! So, the plan is for her and her mom to come here to LA in a few weeks for another heart catheterization at UCLA. We are so hopeful that this weight gain will have tightened her PA band and allowed her pulmonary pressures to come down.

8/28/00- Well, Tong Tong and Yehong have arrived and are staying at the Ronald McDonald House but we keep having to postpone her cath because she keeps getting colds! She looks great! Almost chubby! I took Liam and Shao Shao to see her and they had such a great time together!

10/20/00- Tong Tong had her cath and it was pretty scary. She had a terrible reaction to the procedure and ended up having to stay on the ventilator for several days in the ICU. All of the nurses were telking me that her heart was so terribly sick. We were devastated to hear that her pulmonary pressures have not come down even with all of the weight gain. Yehong, Shao Shao's mom (Dan) and I all held each other and cried and cried upon hearing the news from the cardiologist. We fear that there is nothing that can be done for her short of a heart/lung transplant. Devastating news!

11/17/00- We have received wonderful news that Dr. Laks and the cardiology team at UCLA feel that Tong Tong is eligible for a heart transplant NOT a heart/lung transplant! We are so happy and relieved to hear this! Now the task of figuring out how in the neck to raise that kind of money!!

12/7/00- Again God has smiled on us!!!!! Tong Tong's dad, Frost, has insurance through his job in Dallas and the insurance will cover the transplant! I can't believe it!!! I have been lying in bed at night wondering how I was going to manage this! I will have to raise some money for the deductible and some out of pocket expenses but I know that I can handle that chore! We are doing the Snoopy dance here!

1/03/01- Tong Tong is officially listed for the heart transplant!

2/13/01- We met with a general pediatric surgeon today. We have learned that Tong Tong has malrotation - which basically means that her intestines are twisted and this is quite dangerous and will require surgery to correct. Poor little thing! There is discussion going on right now as to whether this should be done immediately or wait until after her heart transplant. At the time of the stomach surgery they will also surgically place a feeding tube in her tummy. It is much safer that the feeding tube currently in her nose.Please pray for this little girl!

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