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