last updated 2/17/01
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Shu-tong and her mother Yehong arrived here in the US on September 6, 1998. We had a terrible time getting them here due to the US Embassy in China refusing their visas twice. We had letters from the doctor and hospital that would be seeing Shu-tong as well as countless other documentation but still they were refused. It was incredibly frustrating and sad. This only child's chance at living was to come to the US for treatment. Finally, we got Senator Barbara Boxer's office involved who helped us to intervene and obtain their visas. This entire process took several months. Shu-tong's father, Zhentao, was here in the US waiting for them as his company had sent him here for training for a few weeks. I had been in communication with the family, via the internet, since April. Shu-tong, whose nickname is Tong-Tong, was diagnosed as inoperable in China. Her parents took her to the 2 top heart institutes in Beijing. They were told that nothing could or should be done and that they should give up. Her parents were not willing to do that!
My baby's cardiologist, Dr. David Ferry, agreed to donate his services as Tong-Tong's cardiologist. On September 14, 1998 Tong-Tong underwent a heart catheterization at Cedar's Sinai Medical Center. We received the wonderful news that Shu-tong was eligible for surgery. It would be high risk because of her frail condition and her pulmonary hypertension but what are the alternatives? Certain death - not an option! Her diagnosis is single ventricle, severe pulmonary hypertension and cortriatriatum.
The family has scraped together every penny they had and could borrow but we will need much more to save Shu-tong's life. Every child deserves a chance at life. She is a very clever and sweet baby and desperately needs our help!!! Tong-Tong is 28 months old and cannot yet even crawl! A series of heart surgeries will reduce the work load on her heart and enable her to lead a normal life.
For more information, please write:
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: Tong Tong Fund
Please visit their website at www.heartofachild.org
10/29/98-We just got Shu-tong's surgery date! It will be on November 10th, 1998 with Dr. Hillel Laks at UCLA. (Dr. Laks is my baby Liam's surgeon and Shao Shao's surgeon as well!) It will be an open heart surgery where they will do a Pulmonary Artery banding and a resection of her cortriatratum. Tong Tong was born with a very rare heart defect. One of her atria has a membrane dividing it in half. So, it's like she has three atria instead of two. This has cause tremendously high pulmonary pressures and has increased her pulmonary hypertension significantly. We will meet with Dr. Laks on Nov. 6th to discuss the surgery.
11/7/98-We met with Dr. Laks yesterday about Tong Tong's surgery. He will be doing one additional thing during surgery that we hadn't expected. Her AV valve is leaking significantly and he will be repairing that as well. He thinks that she will only have to spend about 40 minutes on bypass (heart/lung machine) which is good. He expects her to be hospitalized about 10 days if all goes smoothly. Please pray that it does!
11/9/98-Tong Tong had her pre-op testing today - EKG, chest x-ray, blood work and exam. It was very hard to get the blood as her hematocrit is very high so her blood is very sluggish. All is in order for surgery tomorrow.
11/10/98-We arrived at UCLA at noon today but they didn't actually take Tong Tong from us until 3:30. Frost and Yehong were sobbing after they took her and Shao Shao's mom, Dan, and I were as well. It is one of the most difficult things a p0erson would ever have to do - hand their child over for heart surgery not knowing if you'll ever see them alive again. It was a very emotional day. Tong Tong did quite well with the surgery!!! She had no problems with the heart/lung machine. Dr.Laks removed the membrane/septum in the atria, repaired her A-V valve and banded her pulmonary artery. He is a miracle worker! The surgery was over at about 9:30 pm but we didn't get to see her until about 11:30 pm. She looked good! Her PA pressures came down from 70 to 22 in the OR! Dr. Laks says that he thinks that she will definitely be eligible for the Glenn surgery! The Hao's are so relieved and elated that Shu-tong did so well! More tears but of joy!
11/11/98-Tong Tong is doing pretty well. She is in heart block so an external pacemaker is being used. They are very heopful that in the coming days her heart will regain a normal rhythm. We went and visited tonight. Her PA pressures are kind of jumping around quite a bit and they are keeping her very heavily sedated as when she wakes up she is very agitated and her pressures shoot up. They think she is having some bronchial spasms for several times today her saturations begin falling and her PA pressures rising for no apparant reason. They have to "bag" her (manually pump extra breaths into the ventilator tube) then everything stabilizes again. Please keep your thoughts and prayers with this child!
11/14/98-Tong Tong was extubated today (of of the ventilator)!!! Yehong got to hold her! Things are looking pretty good but she is still on the external pacemaker.
11/15/98-A pretty rough day today! Tong Tong has a very high fevor and is showing signs of infection from a culture they did from her Arterial line site. She had to be re-intubated. Yehong had held her today for 5 hours and was quite upset tonight. Yehong was crying most of the evening, very fearful. We spent about 3 hours with them tonight and I had a long talk with the cardiologist. Tong Tong's fevor was about 41C - very scary. When we left they were putting her on a cooling blanket. Please let her get through this!
11/16/98-Tong Tong's fevor stayed high all day but finally came down tonight- hooray! It looks like the antibiotics are working. It is looking more and more like they will need to put in a permanent pacemaker :-(
11/18/98-Dr. Laks is now talking about taking Tong Tong back to surgery to tighten her PA band and to implant a pacemaker. Frost and Yehong are glad about the PA band tightening because it will bring Tong Tong's pressures down more and get her closer to being eligible for the Glenn surgery but they are quite nervous about the pacemaker. They will look at her fevor tomorrow to see if the surgery can be done then or wait until Friday.
11/21/98-Tong Tong continues to spike fevors. So far none of the cultures done have shown anything growing. An infectious disease consult was called in yesterday but he is not too concerned at this point. Tong Tong does have pnuemonia so they have her on antibiotics and they are still holding off taking her back to surgery. We have got to get her through this!!!
11/24/98-Tong Tong was taken back to the OR today. They tightened her PA banding and implanted a pacemaker. The poor little thing has been through so much. We are quite hopeful that the worst is over. The infectious diseases team thinks that there is no infection. They believe that she is just one of those children who spikes fevors. We pray they are right! After the surgery they moved her to the Peds ICU which is a good sign.
11/29/98- Tong Tong is still in the Peds ICU and we are worried as she does not seem very responsive. I think that she is going through drug withdrawals as when I visited her today she was shaking a bit and would go in and out of being responsive. Yehong and Frost are holding up fairly well but are very concerned about Tong Tong's lack of response. WHen she saw me she got very excited, smiled and kicked her legs, but a few minutes later you could get no reaction out of her at all.
12/1/98-A team of neurologists have been called in to examine Tong Tong. There is concern about possible brain damage. The parents are quite worried and so am I. I am still thinking and praying that it's drug withdrawal. They did a CT scan and the results were good. Tomorrow they will do an EEG.
12/2/98-The EEG was done today but I don't know the results yet. Pain Management is being called in (a group of anesthesiologists) to access Tong Tong and see if this is all drug related. Tong Tong was put on Ativan and slept for the first time in 4 days!
12/3/98-An MRI was done today but there was quite a scare as they didn't know Tong Tong had a pacemaker and shouldn't have had an MRI! An MRI machine can de-magnetize the pacer and cause it to malfunction! Thank goodness when the parents notified them about the pacer (about 20 minutes into the test) they immediately stopped the test and there were no ill effects! Whew!!! What a terrible rollercoaster this family has been on! Tong Tong is now seeming more responsive after re-evaluating her meds which supports my theory that this is drug related not neurologically related.
12/4/98-Frost called me this morning and said that Tong Tong is doing well! The neurologists have now confirmed that they think all of her weird behavior is due to the drugs not her brain. We are so happy and grateful!!! She has an NJ tube for feeding (Goes through the nose). The docs have said that as soon as Tong Tong will eat by mouth that she can be released! Happy dances being done here!!!!
12/11/98-Tong Tong was released from the hospital today! I spent most of the day at UCLA with them waiting on one of the prescriptions. It was so frusytrating. After a month being there, they were ready to leave and so was I! Tong Tong came home on a very slow wean of Methadone and Ativan as well as various heart, blood pressure and dieuretic meds. Tong Tong was so happy to see me. She just grinned from ear to ear and wanted me to hold her!
12/16/98-I took Tong Tong for her post-op check up today. The PC feels that she is doing quite well except there is concern about her eating enough and gaining weight. I will be weighing her each week or so and reporting the progress to the PC. If she does not gain weight then they will want to insert an feeding tube (NJ)through her nose. Hopefully her appetite will increase.
12/25/98-As I posted in Shao Shao's diary, we picked up the Deng and the Hao families and brought them to our home Christmas night. A good time was had by all!
1/19/99-I took Tong Tong for her first pacemaker clinic at UCLA today. It was quite extensive testing they did. They turned the pacer down to 100 beats per minute. We got some very good news. Tong Tong's heart has regained it's atrial beating - meaning that she is only partially dependent on the pacer now. Her heart is beating every other beat on it's own! Her parents are relieved and elated! Tong Tong continues to get stronger and has really started to gain some good weight. She still cannot stand unassisted but is definitely improving! I am so impressed at the recovery this little one continues to make!
3/5/99-Today I took Tong Tong and her parents to UCLA for a cardiology check up. Dr. Alejos is pleased with her progress but would like her to gain more weight. The bigger she gets, the tighter the PA band will get and this will help to bring her pulmonary pressures down. He wants to do a sedated echo soon to check on the banding to see if it's tight enough. Tong Tong will probably have another heart catheterization this summer to check on her pressures to see if she is eligible for the Glenn surgery. We are still struggling to raise money for Tong Tong. I have faith that somehow we will be able to raise enough for her next surgery! She is a precious child and my son, Liam, is quite taken with her. They both squeal with delight when they see one another!
3/16/99-Tong Tong continues to get stronger. When she is sitting on a little chair she can grab onto the bed and pull herself up and stand. This is great progress. She will be 3 years old in May and we are hoping to have her walking or at least cruising around the furniture by then!
3/30/99-I took Tong Tong and her parents to UCLA today for a sedated echo. We don't know the results yet but I'll post as soon as I hear. We are all starting to get nervous about paying for these tests and Tong Tong's next surgery. We are keeping faith that the money will come!
5/18/99-Tong Tong is doing so beautifully! She can cruise now! We are all elated. Hopefully, it won't be much longer until she can walk all by herself! She will turn 3 this Saturday so we will have a little party for her. She loves Teletubbies so we have lots of Tubby gifts for her. We haven't been too successful in raising much money for Tong Tong so I have serious doubts that we will be able to do her next surgery at UCLA. We will be looking into Children's Hospital LA and Cedar's as possible options. She needs to have a cath in mid June but we need to figure out where her next surgery will be. Please pray that whatever hospital works out is the right choice for her!
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