Latest Update on Jiliang ~ Please read all the way for the positive news

This was taken on 5/3/10 in the ICU, from my cellphone. It was her first full day of being awake, after be on a vent for over a week. She was laughing, and sounded like a baby jaguar, "Rar", every time she laughed because of her hoarseness from the breathing tube being in for so long. She sounded so cute. She was so happy to finally be awake. She is no longer wearing the nasal tubes. :)

Jiliang has been through so much. She is still recovering nicely, but there is so much more that needs to take place before she can leave the hospital. Her breathing is raspy and rattley (Is that a word?). She is on a lot of meds still and they are giving her additional meds to get her off of the Morphine and Ativan to avoid withdrawals. She was having withdrawals yesterday: sweating, shaking, upset stomach. She is not eating great and she has been choking on her liquids. I requested that the respiratory therapist check her out, so there are 2 R.T.s there checking her out now as I type from home. (I left just after midnight tonight, because she was up partying until 11:30 p.m.) She may also undergo a Barrium Swallow tomorrow, or a chest x-ray. I thought a Barrium Swallow was what I had many years ago, and was really concerned; but I was told that I had an upper G.I. years ago. I felt much better knowing that her barrium swallow, if ordered, will be pain-free, and not super-scary or terribly discomforting.
She is mischevious as it gets. She has been pulling on her stitches, pulling off her electrodes, and unplugging her chest tube connections. She is cracking everyone up. It is exhausting for me, because so is so active, yet so wobbly. She cannot stand on her own yet. I absolutely cannot hold her under her arms for 6 weeks, or I could do damage to her chest bone and stitches. She asks to go to the bathroom, but getting her there is a chore with all of her fixtures she still has.
Last night, I stayed with her until 1 a.m., because when she got her 9:00 dose of her pulmonary medicine, she gagged and got sick on it. She told me her tummy was upset, and they gave her some anti-nausea medicine. I waited until her next dose at 1:00 a.m. She took it without any problem. The good news is that she is trying to verbally and non-verbally communicate with me more.
Despite all of the upsets, she is handling everything like a trooper. She doesn't cease to smile, laugh, crack everyone up, and be her old, or shall I say, new-and-improved mischievious self. Tonight, I had to lock her bed, because she loves to play with the bed settings: up, down, backwards, forwards. I am waiting for her to sandwich herself in it. She also loves to hit the Nurse's call button. She thinks it's so funny when the red light comes on and then a nurse's voice comes on - she looks up like she has a personal channel to the heaven's. Her face almost speaks, "Hello, is that you God? Yes, I beckoned you with the call button once again." Who knows, maybe she really does. :) Then, when the nurse walks in, she laughs and Scott and/or I get flushed.
After the translators - Alice, the translator; and two Mandarin-speaking nurses - she finally understands that she has NOT been abandoned by us. She understands that she is there to get better and go HOME. Tonight, she looked at me and said, "Home". I just reassured her that she would when she was better. She understands when I leave the room to get her food or drink or have to use the restroom. She doesn't try to climb out of bed and follow me. That is huge progress!
I think that I proved my theory on whether or not she heard us during her heavy sedation: Yes! She did. She is pretty shy, although she is less inhibited with the medications that she is on. She seems to shy away from strangers. However, after she hears them speak, she recognizes their voices - although she may not understand why - and warms up to them quickly. Kayla, a special nurse who cared for her often, stopped in. Jiliang hid her face at first, thinking it was another medical professional who was going to do something to her. Yet, after Kayla starting talking to her, she warmed up drastically, joking and laughing with her, playing peek-a-boo with her, teasing her.
The other day, when she was still in the ICU, her Godfather, Sean, stopped by to visit her. She was heavily sedated. Therefore, she thought he was a doctor, so she hid from him. Finally, she realized who he was, and starting playing with him. Sean said goodbye and played Peek-a-boo with her in the window. Every time she thought that he was gone, his hand or face would pop back up in the window. She laughed so hard. I didn't get a chance to tell Sean, but when he left, she stared and pointed at the window for about 3 more minutes, waiting for him to pop out again, with both of her arms outstretched waving goodbye.
She has really been talking in English a lot. I was trying to determine whether or not she would wake up speaking Chinese, English, or advanced cardiology medical terminology. :) She still understands Mandarin. She has also been talking in more English. Before her surgery, she stopped speaking Mandarin and English and did not even acknowledge yes or no by shaking her head, or even point to a choice. Now, she is saying words, even though she sounds like Chucky, from the horror movie. She is also adamantly nodding yes and no. It's pretty cool.
It looks like she is going to have a lot of scars from this surgery. She has stitches and scars from 2 chest chest tubes, a pulmonary line, a pericardial tube, a main arterial line that was ripped out when she fell, and the one one on the other side where the arterial line was replaced. Of course, she has a scar down her chest. Scott joked that when she took a drink, she would be like swiss cheese.
It's really not funny, but we have to laugh it off, or we would go crazy with too much seriousness with everything going on.
All of the nurses have badges, and they all have pictures of their children behind their identification badges. She calls me Mama; but she calls everyone Ma, and wants to see their children. She knows that they are not her mom, but she understands that they are somebody's mother, and asks to see the nurses' children.
Two days ago, when we moved out of the private ICU room to a room with babies, she was doing something cute. Scott showed up, and she was a little drugged up, and making a number one to him while she slid sideways into a half-jacked postion in the bed. I thought she was trying to say, "One more" something. Later, after she gained composure of her motor skills a little better, she put her hand to her mouth very gently, as one would do if they were dramatically tiptoeing through a baby nursery. She put one finger to her mouth and made a gentle, "Shh" sound and lipped, "baby", pointing to a baby on a respirator in a crib. I noticed that she always looked at babies in China. I can only wonder what her experience with babies was like in her orphanage. It was not something that I taught her. It was obviously something endearing that she took from her nanny at her orphanage. She loves babies. She pointed to the baby in the room today and said aloud, "Shh. Baby." However, her pronunciation of baby is much different.
She is in excellent care at Mott's. They are taking wonderful care of her. Many people come by to check up on her from the ICU and from her current floor. People come by to say, "I took care of you while you were sleeping." They are so impressed by her liveliness and smile. I am very touched by their kindness. Today, Jiliang received a visit from a Therapaws dog, which she really enjoyed. She has also been serenaded by a wonderful Music Therapy woman named Betsy. Jiliang loves the music and lullabies to Betsy's guitar. The Child Life Specialists also continue to stop in with books and toys for her to entertain her. She is learning to make the most of her stay at Mott's.
Last, but not least, one of the nurses offered to do something especially kind. She is Chinese-American and offered to cut her locks of hair to be used for a hairpiece for Jiliang's scarred and bald spot on her head. I was taken aback by that generous offer. Thanks Pauline for that offer, which I will gladly accept. I look forward to that day. Thank you to Diane as well for informing me about the hair organization.
I also want to thank Mrs. Chestney for the wonderful dinner she sent to us. Thank you to Mrs. Chestney's Kindergarten class at Patterson Elementary in Tecumseh for your wonderful cards for Jiliang.
Thanks to my brother-in-law, Greg, for the chicken dinner you dropped off recently. Sorry I missed you. Yum. Thanks Kristy and Phil for the awesome enchiladas and potatoes. They fed us for days. It was awesome! Thanks Lori and Sean for the Chinese treats from the Asian market, for Jiliang. She is crazy about the crackers and the Gelatins.
There are so many people to thank, and I am so greatful for all of the kind efforts and wonderful prayers. I will continue to report Jiliang's successes and obstacles. I know that she will do well. Right now, it is just a matter of time before she can come home. I may be a week to 10 days, but hopefully sooner.
When we leave the hospital, we will get to see where her pulmonary pressures are. We haven't been able to see those pressures for about a week. That is hard not to know, but that was a line to the pulmonary vasculature that needed to come out. I truly believe that this was not all in vain, and I hopefully await joyful news. As for the medicines she will be on, I certainly pray that they are not as overwhelming to her sleep as they are right now. I am not looking forward to that, but I am committed to doing whatever keeps her safe. Right now, they have to give her medicine every 4 hours, which includes waking her throughout the night. My friend Natalie has a daughter with diabetes and she understands, if any mom does, about the intrusiveness of medicines during sleep. However, I am sure that my little super-trooper will handle it fine, and will just be thankful to be HOME! I will enjoy seeing her thrive after this surgery.
As always, God Bless you all and thanks for the prayers. Through the difficult times, we continue to receive blessings in unexpected places. Please know that your prayers and positive encouragement have carried us through.
Jill :)