I think she looks like a cute little piece of candy, smiling in her monkey slippers and electrode fashions.
On Friday, we had a winter advisory and a snow day for me - not the kids. That night, Jili and I had to venture to U of M for Jiliang's Sleep Study at 7:30 p.m. The roads were treacherous for about 10 miles, and then nothing but clear roads.
Jiliang came home in the year 2010 with some sleep apnea and snoring. The sleep apnea seemed subside over the year following her heart surgery. Her cardiologist said he had seen a correlation between Truncus Arteriosis patients and ENT structural issues. At first, it wasn't really an option to fix the sleeping and possible apnea, until she was one year post-surgery and recovering well - of course.
The snoring has been pretty scary. In the past, all I had to do was adjust her, and her snoring subsided. Most recently, it had worsened. It became so bad that turning her no longer helped, except on mild occasions. I became afraid for Jili's erratic breathing. In January, it was so bad that she would startle herself and gasp and jump, and then go right back to snoring. I videotaped it, just in case in she did not do it at the sleep study. Of course, during the entire month of February, her snoring reverted to mild, as it periodically does. At the sleep study, of course, it was mild, until the day after she came home. It will be interesting to see the results. The ENT doctor had recommended a tonsilectomy for her enlarged tonsils and snoring. Because of her heart condition, however, he wanted to make sure that he weighed the risks, in case there were any complications during her tonsilectomy (NOT a comforting thought). Her cardiologist concurs with tonsilectomy, and believes she is in a healthy place to have the correction done - we will see him in a weeks to get his approval, of course. Her pediatrician also suggested that her breathing was putting a lot of unneccessary pressure on her heart and lungs. That is my absolute main concern. I just pray that the sleep study concludes that she is eligible for a tonsilectomy to alleviate unneccessary pressure on her heart and lungs - and of course, rule out sleep apnea, which is scary in itself. I will definitely show her ENT the video of her gasping and jumping in her sleep.
Jiliang did a great job at the sleep study. I was so proud of her, because she was not afraid to go to the hospital. She actually trusted that I was going to be with her and that we were going to have a girl's night out. Never once did she fear the hospital or fear our separation. She was looking forward to an overnight with Mama, where we watched Lady and the Tramp.
The sleep clinic said that it would take approximately 45 minutes to hook her up to the electrodes and get her ready to settle in for the night, depending on how cooperative the child was. Jiliang was so cooperative that the technicians commended her, and the female told me that she did better than any other child that she had encountered. I am so proud of Jiliang. The staff, especially the male and female technicians, and the gentleman who checked us in, were exceptionally kind, helpful and professional.
The sleep study was only a little grueling. I woke up several times to Jiliang tossing and turning; and at 2:00 a.m., a nurse flickered the light 3 times and creaked the door open and closed three times, only to turn the light on fully. The last time she said, "Oh, we're done now." I tend to talk in my sleep, so I cautioned myself, think before you speak Jill, and asked, "Are you done with the sleep study? We can go home now?" The nurse responded adjusted a few of Jili's electrodes that had come off during her stirring and said, "No, I'm just done turning off and on the light." She told me that Jili had been tossing and turning, and the staff couldn't see what she was doing, so they were checking on her. I was happy that they were so diligent about keeping Jili safe and watched over. Did her charts flag her as a flight risk from her heart surgery days? Hmmm. Either way, I wasn't complaining at their attempts to keep her safe. Six o-clock came quickly, and we wasted no time getting out the door. Unfortunately, the roads were icy, and our drive home was slow, but uneventful.
When Jiliang and I got home, she said, "Mom, I had a fun day with you today." I was really happy that her hospital experience was associated with something positive, and that she considered having Mommy-Jili time special and fun, even though we spent it in a hospital. The truth is that Jili never fails to remind me of the important things in life: it doesn't really matter where you are, but who you are with and what you make of your time that truly matters in life.
Later that Saturday night, Jiliang told me that her tummy was itchy. Lo and behold, Jiliang had a really bad contact rash from the electrode glue, with raised red patches and little white, itchy bumps. Uggh - my poor baby. On Sunday, she developed a rash all over her face (where each electrode was placed), under her chin, on her neck and more on her belly. Benedryl and Hydrocortisone were not helping much, so she was prescribed some Zyrtec and she is continuing with the Hydrocortizone cream. Hopefully it works. When I picked my baby after school today, the shape of her face had changed due to the swelling. I am just praying that the prescriptions work and that we can determine what she is allergic to, for future reference. Hopefully, we will not have to take her in the doctor's office - that would mean it has worsened - and I can only imagine how uncomfortable that would be for her. Anyhow, she is not complaining much. She is being a real trooper.
Please keep my girl in your thoughts and prayers this week for a speedy recovery. I am also praying that doctors can fix her nighttime sleeping and breathing issues to keep our little girl safe and healthy.
Thanks,
Jill :)
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