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 :)