Still in Moderate Care for a few days :)

Sorry I haven't posted much lately. I have been pretty busy with my girl being so active. Yesterday and the previous day, Jiliang was honestly driving me bonkers, to say the least. She is becoming very active, and there is no stopping her, even with all of her tubes. The chest tube in her left side is the scariest. If she trips over it, it would be dangerous. She has no fear. The good news is that the chest tube will probably come out tomorrow. Thank God!
She has been super-cranky and demanding, compared to her usual disposition, which is also a side-effect of coming off of her narcotic and sedative. It is hard to see her like that, but I am happy to see that she is coming off the heavy stuff and getting closer to coming home. She is off of the morphine today, so she is able to walk and stabilize herself MUCH better. She is tapering off the Ativan and hopefully it will be completely done tonight or sometime tomorrow. After that, she will be able to be transferred to a regular room. Yeah!
She is on a low-fat diet now, to help deter fluid retention around her chest. She is doing well. It am not happy about it, because the cheesecake and chocolate cake I have been ordering for "her" ;) are really good. That means I have to eat my own sweets. Seriously, she wasn't getting any sweets, but it ruined it for Mom. I decided to go on a heart-healthy diet myself, in her best interest. It will good for our entire family, but mostly me. Although, for the record, I am not foregoing chocolate or sweets completely. However, we all need to eat better and be more active. That is one good thing that will come out of this ordeal.
Today, she is a little more like herself. I was pretty happy that the lack of meds unveiled a child similar to my little Jiliang. She is not as agitated, demanding, and cranky. I was at the hospital with Scott and T.J. today. Then, my parents came to visit. After everyone left, she fell asleep within 15 minutes at 3:30 p.m. She was asleep when I left at 7:00 p.m. If she has visitors, she fights sleeps. Last night, she stayed awake all day and when I had to leave (since Scott was at work), it was very hard on her. She cried as I left, and the longer I stayed, the more she clung to me. Usually I stay until she is fast asleep, however late that may be. Her sadness put a damper on my Mother's Day, even though I was fortunate enough to spend the day equally with both of my beautiful children. Thankfully, my dad picked up T.J. from the hospital, so I was able to spend time with both children together and individually (I would prefer together over anything). I also came home to a surprise pot of beautiful flowers on my porch from my Aunt Cindy and Uncle Jerry. I love them, and it certainly cheered me up. Of course, I checked on her as soon as I got home, and discovered that she did not cry long. The nurse sat with her and then she was sound asleep 15 minutes later.
The toughest thing that we are dealing with now is Jiliang's oral medicines for her pressures: blood pressure and pulmonary pressure. She gags on her main medicine and if she is really stubborn about swallowing it, or if she is just too tired to swallow it. It makes her throw up. It is so upsetting to see her like that. Yesterday, she got sick in front of T.J. He handled it really well. He waited until later, and then said, "That was really gross, huh Mom?" I was thankful that he was calm in front of her. He is such a supportive big brother.
A few days ago, I left so sad after she ate such a good dinner and then got sick. It broke my heart. Then, I realized that 3 weeks ago we were praying for her to live through the surgery and so dealing with this should be nothing in comparison. Yet, it is still painful. After three weeks in the hospital, it is hard to continuously stay positive when you see your child endure so much agony. Yet, I am extremely thankful that she is recovering. I try to remind myself that this is just a hard thing to go through with a child, and to remind myself to count my blessings -I am praying that she learns to take her medicine without so much trouble and that she continues to have progress.
A few days ago, I requested for her to take it in a pill form orally, instead of with a syringe. They accomodated my request, and even though she is unable to take the pill orally, crushing the pill with some syrup in a syringe is a minute amount compared to the liquid portion. I am glad that I asked. It doesn't help that she gets other oral meds too, but she gags on her most crucial med the most, because it tastes bad.
The nurses have all told me that a child her age can not usually swallow a pill. It is a very small pill. However, I believe that she can do it, if I practice it once we get home. She does well if I reward her with a Skittles candy afterwards, which also relieves the gagging (chewing on something). I just need to learn how to tell her in Mandarin to swallow it without biting it, so she doesn't have to taste it or gag on it. If anyone has any med-giving ideas, please feel free to share. By the way, I do request that no one gives her Skittles, or else that reinforcement will be useless. The hardest time is going to be when I have to give her medicine to her while she's sleeping. She was getting her pressure medicine every 4 hours, and they adjusted it to every 6 hours. Today, I requested for them to regulate it for every 8 hours. I don't want to be setting my alarm for midnight or 2 a.m. That would suck eggs for me and for her.
Two nights ago, I was so sick of being here. On top of that, she was acting up so bad and twisting her cords and tubes so much, that I was exhausted. She was so wobbly and seemed so fragile, in the midst of all of her activity. I was so afraid she was going to fall or rip something out. I am also not able to lift her under her arms, because of her open heart surgery chest sutures. I had to remind myself that I am just sick of the hospital, so she has to be 20 times as sick of it as I am, being that she is the one in all of the pain and going through it all. It reminded me of when I gave birth and had 3 subsequent corrective surgeries within 3 years. Recently, I was commiserating about how thankful I was to have that all behind me and Scott said, "Oh, yeah, that was so miserable. I said, "Hey, wait a minute, I happened to me, not you!" Of course, Scott said, "Hey, I went through it too. I had to deal with you."
The main restriction for her is that she cannot be lifted under the arms. That is hard to do. It is a natural reaction to want to lift her under her arms, or grab her there if she should start to fall. Her chest bone needs to heal and picking her up there could make the bone fragment and heal deformedly. Plus, it would cause her a lot of pain. My own hands have resorted to reaching for her there out of instict, so it is easier said than done, but I just need to let others know: Do not pick her up or lift her under the arms.
Well, this was a long post. If you got to the end of this post, you will be happy to hear that she received a good medical report on her latest Cardiology Echo. I will type a separate post on that above.
Have a good day! :)
Jill

Mott's Social Event

Every Thursday night, Mott's Family Resource Center has a social dinner. It is complimentary for families. T.J. and I enjoyed a dinner and Zingerman's bread, along with a live folk singer. They told us that the area had extended hours tonight for an ice cream social with some Michigan athletes.
T.J. worked on making some arts and crafts for Jiliang. I was typing my blog when all of the athletes showed up to mingle with families, and the ice cream social began. It was a very nice event. As I was typing, some athletes came over to talk with T.J. about his artwork. T.J. made an ice cream sundae and then he was wisked away by some female track runners to play Candland. There were some U of M football players, men's and women's track players, and some wrestlers.
All of the athletes were signing hats, so T.J. got a few hats with several signatures. They passed out the hats afterwards. I wasn't about to go ask for autographs, because I had no idea who anyone was. Luckily, they passed around hats for signatures and just gave them to the kids after they were signed. It was a very nice gesture.
I know I have a lot of Michigan football fans reading, so the football players were were #60, #65, and #44. Sadly, I admit, I am not much of a sports fan myself, but it was a really nice thing to do for the kids.
T.J. wore his hat; he set one aside for Papa Harvey's sports basement; and saved another for someone special. One gentleman kindly took a picture of T.J. playing Candyland and printed a picture off for us.
Lastly, we scooped up a bowl of ice cream to take to Scott, who waited back at the room with Jiliang. It had more topping and sprinkles on it than ice cream. Yummy! :)

Today's Update

Jiliang is doing well. She is so active. She does testy things just in spite of being here. I am being pretty strict with her though, so she doesn't pick up bad habits. For example, when I unveiled her peas, corn and hot dog today, she dug in like an animal, so I took it away and we started over. This morning, when the morning nurse came on, Jiliang handed her heart monitor leads to her. So much for the protective netting they put on her to prevent her from pulling them off.
The main line in her neck accidently got yanked out last night. The placed an IV in her right hand, but Jiliang messed with it so much that they had to call in a new nurse to place a new IV in her right arm. So far it's still there. Like I said yesterday, she is going to have holes and stitches everywhere when she leaves the hospital.
The nurses are shocked that she is not sedated or agitated, with as much medicine as she is still getting. They are slowly weaning her off the meds. I, however, know that she is slap-happy and a little agitated. I supposed it is nice to know that my child is pretty agitated and strangers still find her in good, cheerful spirits.

She got to see her Godfather, Sean, today. She hammed it up for him while he was there. Before Sean left, Jiliang was able to have another therapy dog visitor. Sean was able to get a few pictures, which I will post later. Jiliang got scared when the therapy dog was going to climb in bed with her. After warming up to the Golden Retriever, she enjoyed the visit and cried when he departed.

Jiliang is working with a physical therapist. She is unable to walk right now, but is active in every other way, other than her balance issues. It's all related to the medicine.
I so greatful that our cardiology team put in a craniofacial consult. We missed our appointment and they refused to allow us to keep it and just see her in the hospital. Because of her fall here and our concern for her safety with playing at home, the cardiology nurses suggested having a consult for a helmet before she left the hospital. She now has a helmet. Yeah! It was especially fitted just for her, so that it would not irritate her open fontanelle area. Now, she can ride her bike and play on a swingset without my worrying about her incurring a head injury over minute things. It is good to have connections with the right people. :) The fellow that came down from the craniofacial department also told Scott that once Jiliang recovers from her heart procedure, that they can successfully repair her skull and add hair!!!!! Great news.
She is having trouble swallowing liquids. They are going to do a barrium swallow tomorrow morning to make sure she is not aspirating her liquids. The medications could also be relaxing her esophagus too much. Additionally, she is still having difficulty talking. She has not regained her voice much. It is raspy, and we are hoping that it is just irritated and will return by the end of the weekend.
Tomorrow, she has physical therapy, the barrium swallow and then a chest x-ray. We have asked for the staff to try to get her in bed by 8:00 or 8:30 p.m. Last night was 11:30 p.m. and then she slept in to 9:00 a.m. That cannot continue to happen. They are aiming for an earlier bedtime for her.
Gotta go! There is some athlete talking to T.J. and making arts and crafts with him. I don't want to neglect my boy.
Jill :)

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 :)

Jiliang is Recovering Very Well

I can't post too much, because Jiliang is waiting to watch her favorite Youtube video of a little boy singing a Chinese song. :)
I meant to post yesterday, but didn't get a chance, because she kept me busy. She is doing great: laughing, smiling, talking. Her mischievious personality is coming out. Yesterday, her medication left her normally shy disposition inhibited. :)
Lots of stories and praise reports, but she is being mischievious to get my attention, so I will write later.

Good News! Sorry for the late posts.

Jiliang is doing much better. I always love posting good news. The only bad thing is that she cries when I am not there; and I cannot sleep or eat in the room. Today, she sat up when the doctors did rounds in her room. She stretched, gave a big smile and went back to sleep. I heard that the doctors loved it and it made their day.
My mom came up around 9:30 or 10:00 a.m., and reported that she was awake. My mom laid with her, and Jiliang kissed her hand several times. I took some time to pack an overnight bag and food, since I figured I was going to be at the hospital for a while. Jiliang wanted to talk on the phone to me, so my mom let her say hi to me. She can't talk yet, but listened to me and didn't want to give the phone back. After I hung up, she was unconsolable. She cried hard, she cried soft. It was saddening for my mom and the nurse to endure. The nurse gave her a sedative, because her heart rate increased. No more talking on the phone with her, if I am not close by her.
The nurse also reported that she pulled out her feeding tube through her nose and her oxygen tube. Muntaz, her nurse, couldn't stop her in time. The doctor said that it could stay out if she tolerated taking her medicine and food orally. She drank some juice and had 2 bites of Jello.
When I arrived, she was sedated. :( I had to give her blood pressure medicine to her. She needs this medicine! That little stinker took it and held it in her cheek somewhere. She opened her mouth to drink water afterwards, and took a few sips. Then, all of the medicine went to her cheeks, making her resemble a chipmunk. That little stinkpot had all her medicine in her mouth. She held it and refused to swallow. The nurse said, "Let's see who wins," thinking I was surely going to win the battle. I pinched her nose shut, and then the nurse squeezed and pushed her cheeks. Jiliang started to squirt it out the sides of her cheeks and tried to dribble it down her neck. Jiliang won, but not for long. The feeding tube went back in her nose.
She had a lot of separation anxiety from me, despite the medicine torture I put her through. She curled up with me, placing her foot in between my knees, a leg over me, one arm around me, and her hand in mine. She had to make sure I wasn't going anywhere.
We had to change rooms later in the evening. We were spoiled to have a private room to ourselves, but the PCTU (Cardio-Thracic ICU) got a heart transplant baby, so they needed a private room for him or her. I am thankful for the private time we had for the last week and a half.
I told a nurse that Jiliang had pneumonia, and she thanked me for letting her know, but told me not to worry, because they take everything out of the room, including the curtains; and do a "transplant sterilization" of everything. I am fascinated about organ donations, and I need to take the time to sign up as an organ donor myself. That is such an amazing gift to bless someone with in the midst of sorrow.

I got to hold Jiliang tonight and rock her. She loved being rocked. One of the nurses even took pictures. :)
Jiliang is doing so well, but she is also so scared. She is afraid of being left, abandoned, and she is also afraid of every poke, procedure, stitch. For all I know, she may think that this is her new life. That breaks my heart. The thing that really breaks my heart is that through all of this scariness and medical torture, she still looks to me and trusts me. She trusted me today when I held her down - to keep her from moving - when they took out her pericardial tube around her heart today and stitched the hole back up.
In the midst of everything today, I knew that she didn't understand why all of this was happening. What must she think? She came in on surgery day feeling better than ever. We told her not to be afraid, and she woke up full of tubes, in pain, fighting sedation, and fighting sickness as well.
Therefore, I asked for a translator tonight to reassure her that Mom, Dad and T.J. loved her. I need her to feel safe and reassured that we want her to get better, so we can take her back home; we are never leaving her; we love her; she is here to get better and go home.
The translator was our wonderful Alice, who we had the first time, back in March - for our first cardiology appointment. She remembered us. Unfortunately, Jiliang was not fully awake. She was still under the sedatives from the pericardial tube that was removed. It wasn't supposed to last that long, but it did. I really hope that she remembers what Alice said.
She needs to take her medicine for her pulmonary hypertension. We can take out her feeding tube if she obediently takes it. We used Alice to explain. She wasn't due for oral medicine until 9:00 a.m., and I didn't want to just use water. I wanted something that didn't taste good. Poor baby. This is important medicine though, not optional, so it had to be a teachable moment. One of the nurses suggested Pedialyte. Yeah! Jiliang hated it. She made the sourest face I have seen, and once again, held it in. Alice told her to swallow. She opened her mouth, and I could see her holding it like a dam behind her teeth, mouth agape, just waiting for me to cup my hand and let her spit it out. Alice told her to swallow and she could have juice. She did it!
When I have a chance to give her the next dose of pulmonary pressure medicine, I want to show her a tube and a syringe, and let her choose to drink it. I am sure that she will make the right choice and then we can take out that darn feeding tube in her nose.
By the way, she is almost weaned from her Oxygen. She still has one chest tube, sedatives, Morphine, and a main line for taking blood. Every day she has less and less medicines, tubes and gadgets, which is one step closer to her being in a regular room and then going home. I am hoping and praying that she is in a regular room by Tuesday or Wednesday. Then, I can sleep and have meals in her room and never have to leave her, except to shower, of course.
I can't wait to get her home. We miss her so much. She has a strong will at home too, but in a more sweet, dainty, subtle and sneaky way. I miss my girl's smile and laugh; but I will settle her her stable health right now. I loved holding and rocking her today; and I also loved it when she whispered "Mama". Babysteps!

May God Bless Jiliang and heal her, so that she may come home to us soon.
God Bless you all this Sunday evening. Thanks for the prayers. I feel so blessed by your compassionate hearts!
Thanks,
Jill :)

Long Day But Making Progress

I arrived at 7:30 a.m. today, and Jiliang had her breathing tube removed today around 9:30 a.m. It is definitely a step in the right direction. However, it was very scary for her. She was breathing very labored and had so much swelling in her throat that she was making a scary sound. They gave her a breathing treatment, and later determined that she also needed a steroid treatment at 2:00 to help her swelling, which was 1 of 4 treatments. The steroid didn't really do its job until around 6:00 p.m. It had been a long day, filled with pain from her persistent pneumonia cough and discomfort from decreasing her Morphine and other drugs. It was hard for her to breath and created a heart rate of about 180 at rest. Luckily, it came down once the steroid decreased the swelling. It was nice to see her finally be in a relaxed state.

Now, she can continue to her recovery process without that uncomfortable tube. It will probably take a few days to get her breathing situated, and to get her voice back. However, she still has a feeding tube in her nose.

Amazingly, she was on 10 drug pumps last week, but she is only on 4 now. She is getting some through the IVs too, as ordered, but this is a huge milestone. Because she has been on Morphine for over a week, they are weining her down and plan to put her on Methadone to avoid her from enduring withdrawals.

Today was a long, long day. She was more sedate today, but more aware of all of the medical tortures (chest tubes, pounding on chest to break up secretions, suctions up the nose and down the throat, etc.) and fear of the unknowns; as well as her fear of what has happened to her: surgery. I was with her all morning, afternoon and evening. I was planning on staying the night, but decided to go home, since tomorrow will be another long day, and she will be less sedated during the day. When I left tonight at 10 p.m., she was doing well. I just called to do a status check and she is still comfortable and resting peacefully.

Jiliang hates coughing. It hurts for her to cough, so she tries to avoid it. She also holds her urine. I have no worries about her regressing back to diapers after this as a few nurses warned during pre-op. She holds it until she cannot do it any more. Then, she gets a mad face and becomes a victim to a diaper after holding for hours to her defeat. Then, she gets a sad, shameful face, because she is upset about going in a diaper. My poor girl. I wish she didn't feel so bad. She is such a good girl.

I am hoping that tomorrow will be better for her. If she has breathing troubles tonight, they could intubate her again, but I don't anticipate that, because she is doing well. Around 3 p.m., however, the afternoon thought that they were going to put the tube back in. Ugghh! Luckily, Jiliang made a huge turnaround.
I am hoping that her infection subsides, and that her left lung sounds more clear tomorrow. I am not sure why there are less breath sounds there. There is still a chest tube there, so hopefully it is just swelling. Anyhow, they will do an x-ray of her chest in the morning. As for the breathing, it sounds much better, and she is looking comfortable.

I am hoping that her chest looks good in the morning, and her breathing is going well. I can't wait to be able to communicate with her. She lipped "Mama" today and only a whisper came out. Then, she lipped something else and looked at Scott and T.J. I had to tell her not too talk, because I could it was painful for her to talk.
It was a very rough day, yet a very successful day for her. She may have a long recovery ahead still - it's hard to say. All I can do is keep you posted each day as we learn to accept this road to recovery one step at a time.

She has had really great nurses all day. By the way, it didn't get passed on to the newest nurse that Jiliang was a flight risk. No one is supposed to leave her unattended. If they step out, someone needs to step in. The nurse told me not to worry about her alarms, because if they go off and she is out of the room, the desk sees them. I made sure to relay the message that Jiliang is a flight risk, and no one is to leave her unattended. She promised not to after that. We might not be so lucky the next time she decided to fall out of bed. In fact, she tried it yesterday with me. When she goes to the regular floor, one of us will have to be there 24/7.

Thank you for your amazing prayers. I will keep you all posted. Hopefully, this all makes sense, because I am falling asleep writing it. :)
Jill