Wednesday, December 28, 2011


It has been exactly one week ago that we flew home from China. What a whirlwind of a week between Joshua's medical issues and Christmas. Unfortunately, Joshua was not doing well from the trip and we had to immediately take him to the ER Thursday morning. They ended up transporting him to Mary Bridge due to his complex heart situation and he ended up in the Pediatric Intensive Care Unit for a few days. He acquired pneumonia caused by the trip and his poor heart, thus they needed to keep an eye on him. The good thing, however, is that we were able to get his heart condition reviewed early as they performed an EKG, Echogram and various other tests and X-Rays.


An area of advice I would like to give upcoming adoptive families; research and study as much as possible on your child's special needs. This preparation and knowledge will arm you with more than just knowledge. It will provide you peace and an aura of calm that you will be surprised will come when you run in to the "kinks" that most likely will occur with their condition. For example, the hospital normally does not allow parents to transport with their children or relative in the ambulance. This is because they are usually highly stressed and overcome by their child's condition that they often panic, causing danger to the patient during transport. However, the nurses were so impressed with how calm and collected I was, they allowed me to ride along. I explained to them that I was very prepared for his severe heart condition and knew he would most likely be in emergent care soon after our return to the states. Thus, nothing was of a shock or surprise to me. Also, when the doctors discussed his condition, they were also impressed with how much I had prepared myself and with the knowledge I acquired regarding his condition. They too were amazed at how calm I was as they told us the serious nature of his condition. It is VERY true that with proper preparation, panic and fear can be decreased dramatically.


Just as we were informed, his heart condition is very complex. And, we now know why China did not perform any surgeries. However, if he had been born in the U.S. his condition would not be so severe as it would have been caught early and surgical procedures would have been done. Nonetheless, we have met with no less than six cardiologist and cardiothoracic surgeons and all of them have told us his condition is found in less than 1% of the human population. It is so complex that they don't even know how it occurs during the development of the heart and they said we will know more about this condition than most doctors due to its rarity. In a nutshell, He has Levo Transposition of the Greater Arteries (L-TGA). On top of this already complex condition, he also has what is called Epstein Anomaly, which causes over 60% regurgitation and has caused his heart to become the largest they have seen in a child his age. His heart has become so large that it is covering almost his entire lung area. Without corrective surgery, they give him a mortality rate of less than 2 years.


We have met with two specialists both from Seattle Children's Hospital and Mary Bridge. The consensus is that we can talk to 30 doctors and all will give us differing opinions due to the rarity of his condition. The main question for the doctors is what "problem" do they repair first that won't exacerbate the other heart issues? Thus, due to such complexity, the physicians at both Mary Bridge and Seattle have agreed that his case be presented to several top pediatric heart surgeons in the world that are located at the top 5 pediatric hospitals such as Boston, Sanford, Ann Arbor, Pennsylvania and Houston. They feel surgery in the Pacific Northwest would not be beneficial for his case.


The current plan is to proceed with a heart catheter, which will be done on Monday, January 9. This procedure will give them more information on his lung capacity and particulars of his heart. This is a mandatory procedure before any surgery is performed. The results of this will be included in their report where we will wait to hear back from the doctors at these hospitals along with the cardio teams at Mary Bridge and Seattle Children's Hospital. Once they have met and discussed their finding, they will sit down with us to present our options and we can decide where we want to go for his surgery. Their hope is that they can perform the first of a number of surgeries in February, if all goes well.


The good news is that we were able to have him home by Christmas Eve and we had a wonderful, active, full, loud and joyous Christmas with the entire clan of 10. MaeLynn, just as I suspected, took a few steps back upon arriving home. She is very clingy and overall just seems miserable. But, if you feed her she becomes happy as can be. But, her neglect from the orphanage and the newness of the situation has taken its toll. However, with each day her whining seems to decrease as she is starting to get use to this rough and tumble crowd. We are confident with time this little girl should blossom. Grandma is definitely enjoying being able to cuddle with her as that is all she seems she wants to do. I pray that in a few days, the MaeLynn that started to blossom at the end of our China trip will once again arise. Next Thursday is her appointment with the cranial-facial team at Madigan Hospital, where we will begin her journey to the hearing world and reconstructive surgery for her ears.


I have received amazing support from my fellow adoptive families and Bloggers. I cannot begin to express my gratitude for the advice, solace and emails of support I have received. You have made this journey so much easier as you held my hand during times of panic and stress, as well as cheer for us during times of joy. For that I thank you all.


Now for my tips/advice to those preparing their adoption journey to China:

1.      The Victory Hotel was fine, but I suggest you try to get a room in the West Building. The buffet wasn't bad, but the food never changed and we got tired of the same breakfast every day. However, we heard the food was better and rooms bigger in their West Building.

2.      Do not get a room any smaller than the Business Suite (DO NOT mistake business room for business suite). This room accommodated both my husband and I and our two toddler children just fine. It had a separate room for our bed and both children preferred sleeping on the floor with just blankets and pillows.

3.      If your child is not an infant, I recommend you NOT pay extra for a crib. I have heard from other families that their child was terrified at the site of a crib. I know our daughter would have probably freaked out, especially knowing she lived in a crib and I can only imagine it symbolizes a prison to them.

4.      We had the Victory arrange for a van to take us back to the airport. We expected to pay around 70 USD, but come to find out, it was free and part of our cost to stay at the Victory. Thus, check on this option as it could be part of your room cost and it is much more convenient than cramming your luggage in a small taxi.

5.      The beds are hard as nails. I felt like it was no different than sleeping on the floor. Get use to it as there really isn't a way around it as that is the standard in China.

6.      In the Business Suite we had a fridge but no kitchenette so don't plan on cooking your own meals unless you get a hotel that specifically has that option.

7.      You HAVE to meet Judy who owns her store called Judy. She is located around the corner of the Victory's East Building. You pass the 7-11 and continue down until you see her store on the right (just past the park). Her laundry fees are the cheapest and she is VERY personable. She gave us little freebies as well.

8.      We highly recommend you go to the Safari Park. Don't waste your time or money at the other zoo. The Safari Park is huge and we only got to see half of the park, but worth every penny.

9.      Take a small card with you with the hotel's address in China wherever you go. Taxis are pretty cheap. Take at least one evening to tour the Pearl River and city at night. They do an amazing job at lighting their cities in China, it is a camera haven.

10.   DO NOT TAKE A TAXI THAT DOES NOT HAVE A METER. We made this mistake when we first were picked up at the airport. We paid 400 Yuan, even after dickering, whereas we would have only paid 150 Yuan with a meter taxi. They will be aggressive as soon as you leave the baggage claim in the airport to catch a taxi so make sure you ask them before you even follow them if their taxi has a meter. They took us all the way to the other side of the airport and even though we kept asking, "where is your meter," and dickered with them, we just didn't feel like walking all the way back through the airport to get another taxi with all our luggage. So learn from our mistake.

11.   We found that there really aren't too many "deals" in China. We did get a great price on pearls at the pearl market, but that was about it. You can always dicker, but considering the quality and that they see you coming a mile away, you don't really get a whole lot of savings buying items in China. Phil had pajamas and I had a traditional Chinese dress tailored. They do it quick and it shows in the quality. We most likely would have paid the same with better quality in the states. Nonetheless, it was fun to get done.

12.   We ate at the Orient express on Shamian Island, which is a French restaurant that has original train cars. Not a bad place to eat. Service wasn't great, but the food wasn't bad and a nice change.

13.   You will hear a lot about Lucy's. The food wasn't bad, but nothing to rave about. There is a children's park next to the restaurant which is a good place to let the children play and get their wiggles out.

14.   We brought our double stroller and it was the BEST thing we did the whole trip. If you are only adopting one, you can use strollers that many stores offer free of charge. But, If you are adopting two, I highly recommend you bring a double stroller. We got stopped so many times by the local Chinese as they thought it was the coolest thing they've seen.

15.   We went to the Beijing Road/Grandview Mall. Beijing Road was not very long and didn't seem to have anything special or unique for sale. However, it is the oldest part of the city and they unearthed parts of the original road built over 2000 years ago. They have glass over these portions and they are fascinating to see. However, the shopping experience was poor and the Grandview Mall a waste of our time. We spent more time waiting for the elevator than shopping.

16.   The Pearl/Jade Market is fairly close to Shamian Island, about a 15 minute walk, and that was a lot of fun as there is more to see and prices are much better.


If you have any questions, feel free to contact me directly. Thank you all for following our journey and I pray you all had a wonderful Christmas and will have a very festive and Merry New Year!!


Lee and Sarah VanGrunsven said...

So glade he was able to be home for Christmas, and thank you for the tips! I have printed them and will tuck them away in my notebook for our upcoming trip!
Our daughter, whom is also a heart baby, will hopefully be seen at Seattle Childrens. We have heard the best places for the actual procedures are the same as you listed above. I feel a bit overwhelmed at times as we are still learning day by day exactly what her condition is. But I know as we get closer to traveling we will have this all lined up:)

Rebecca said...

Thanks for the tips - they are greatly appreciated! We leave for China in a few weeks. We had the choice of a suite in east victory or exec room in the west and went with the smaller room in the west since we're leaving our kids home...hope we don't regret it! :)

Glad you made it back safe but sorry to hear your son got so sick. I hope the doctors are able to repair his heart - he looks like such a sweetie!


Anonymous said...

Its April and there are no updates.
I'm almost afraid to ask if Joshua is ok? I do hope he has
had his surgery, and all is well?
Bless you all, mm, vancouver,wa.