Lily remains in ICU at Millers. We originally thought we’d be here a few days but it will be 3 weeks on Sunday. Lily has had a few more hurdles along the way. The jtube she had placed last Friday seems to be going pretty well. However she did catch a cold and has had a lot of secretions accumulating in her chest. She’s been coughing and gagging a lot. This has brought her much discomfort. The last couple days have been rough. She is experiencing pain and it’s hard for any of us to know what’s causing it since she cannot tell us. We’ve had to resort to additional pain medications to keep her comfortable. We’re unsure whether its stems from her cold or if its GI tract related. But when she has discomfort from anything it increases her tone/spasticity and this in itself creates pain. One thing we do know is that a plastic disk popped off the end of her g-tube when the doctor pulled it out last week. He said it would pass through her system….but the other GI doctors disagree. I was thinking this could be causing her discomfort so they did an X-ray yesterday and found that it indeed has not passed and is still in her stomach. So her feeds are stopped for now so she can undergo a surgery to remove the disk. They will intubate her and remove it through her throat. They also will do a GI exploratory study and biopsy while she is under anesthesia to expose any possible GI issues she may have. She just received her IV (poor thing it took 5 tries to get one–her veins are all used up) so we will be ready for the procedure which will take place tomorrow. Aside from her hurdles–in the windows of calm and comfortable times her tracking continues to improve. She also has been turning her head more to follow her gaze. She seems to be more alert and aware. Her therapists also are beginning to see some purposeful actions.
Thank you for all of your cards, notes, pictures and prayers. We continue to be ever-so-hopeful that we will get her back to the life she knows and loves. Keep dreaming about her and visualizing her the way she was which is the way we plan to see her in the future!