Unfortunate Rollercoaster Ride ~ And Special Thanks

It seems like I post that Jiliang has a good day, and then she has a bad day. We had to leave tonight around 7:45 p.m. I wanted to stay, but we all rode in one car and needed to get T.J. home. It was painful to leave. She was having a bad night tonight, but I am hopeful that it is one of those storms we just have to weather so she can get better.

Because of the bacterial pneumonia, she started coughing today. Of course, she has tubes, so she can't really cough. They have to physically go in an suction her out through her nostrils and through her throat. It throws her into a sweat, agitates her, and makes her gag. Because she is being weined off of the Morphine and Adavan, she is less sedated and more aware of these very uncomfortable procedures. Now, she physically fights it, kicking and twisting her body, which makes it worse. It is so hard to see, yet it helps to know that my strong girl is still in that little body. Just for the record, T.J. and I leave the room if it needs to be done while he is there. He would be horrified to see his sister get upset.

The nurse tonight thought that the infection really set her back and it may be 3 more weeks before she leaves the hospital. I believe that when she gets her tube out, she will recover more quickly; although they cannot risk taking the tube out until she has weathered this infection. I personally think that we will have a better picture of her recovery this weekend, but I am not a medical professional.

When she is not being agitated, she pretty much sleeps through the day still. She is still sedated enough that I cannot communicate with her, so it's a Catch 22 - she isn't able to open her eyes. The good news is that she will probably not remember any of this when it is all said and done.

Anyhow, I hate to post these types of posts, because they are so saddening. Please keep her in your prayers. I know that antibiotics tend to heal, but usually it gets worse before it gets better, as far as getting all of the bad stuff out of your system. She is just getting pummeled with trying to recover from a major surgery and dealing with this.

Hopefully, the rollercoaster ride will end soon. I am not liking these good day-bad day reports. My heart feels guilty for putting her through this, when she was seemed perfectly fine up until her surgery. However, my mind knows that without this surgery she would not have made it into adulthood; and every day commenced more damage to her lungs. As much as it pains me to see her go through this, I know that her chance for long, full life are better with this surgery. I only pray that when things settle down with this infection, her body adjusts to accomodate normal lung pressures, so that this surgery will be a success and prolong her life. All I know is that she deserves a special day of pampering when this is all said and done.

On a positive note, T.J. and I went upstairs to the family room tonight for an ice-cream float social event. It was fun. We made artwork and did a puzzle, and relaxed. T.J. is doing much better, and he seems to be in much better spirits since his exciting day yesterday.

Special Thanks: Thanks for all of your prayers encouragement and positive thoughts. I especially wanted to thank T.J.'s teacher, Mrs. Chestney, for your delicious pumpkin muffins that you sent home with T.J. Thanks to Kristy and Phillip for the meals you sent. I can't wait to try them and take them to the hospital with us tomorrow. Laura McNeil, I got your sweet card. Thanks. Aunt Barb, I got the Society of the Little Flower card and prayer cards. That was really nice. St. Therese, with the Roses, was my favorite back in elementary school.

Thanks,
Jill