My gorgeous angel-girl, Cassie, had a long hard day. After being awake much of the night, once the anesthesia had worn off, mom and dad didn't get much sleep either. Grandma showed on the scene about 10:30 am and gave them a much needed break from being the person at the center of Cassie's universe. After Cassie discovered she was hooked up to a morphine pump, and that pushing the button was a way to fight back against the pain, the day progresses with a bit more humor. She wanted to hold the button, which mommy and daddy had been pushing for her originally. She knew there were several things hooked up to her that beeped periodically when they needed attention, like the infustion pump controlling the antibiotics, and the O2 monitor attached to her finger. She also knew she couldn't exactly control those beeps, although breathing deeper could make the O2 one stop beeping once it started. We were talking about the beeps, and other odd noises in the room and coming from the TV speaker.
Well, mom and dad were both on laptop computers and checking on various things, not really paying attention to Cassie and grandma. Suddenly the morphine pump went Beep-Beep, and daddy said, uhoh what was that. Cassie said, "Daddy, it was me." She loved the sound it made, but she also loved the fact she could control or at least effect the pain level she was experiencing. We talked about her pain, and that it would get better over the next few days. The nurse came in and wanted to move her to change the bedding. Cassie didn't want to be moved, she was very afraid of what it would do to the pain level. I tried to explain to her that yes, it would hurt worse for a minute or so but it would get better fast. I don't know whether she really believed me, but she knows I won't lie to her about things not hurting when in fact they do. So she agreed to being picked up if it meant she could lie in mommy's arms for a while. The nurse and I picked her up and gently slid her into Tess's arms, which was no small feat. She has 4 tubes coming from various location in her abdomen, and each tube is attached to a different drain pouch. They are each clipped onto her sheet when she is in bed, but had to be moved and reattached to her diaper for moving her. She is also attached to a couple of different IV lines and infusion pumps, and a picc-line. So it was interesting trying to make sure all the things moved in unison and nothing pulled on her tender little belly. She slept on mommy for nearly an hour, then wanted to go back to her bed. The photos on today's post show her smiling at the joke of her being the cause of the beeps, as well as a couple of shots of her various hoses and one special one of her just after being moved with mommy. She was still hurting there, but wanted her photo taken anyway.
Once she got back to bed, my being there gave Tess and Brian a chance to eat, and just breathe without worrying about her. They had a leisurely lunch break, and returned in time to find Cassie and grandma both asleep. Like I said, it was a hard day, but the fact Cassie was finally asleep meant we were making progress. Not too much later she woke up and wanted to paint, I know at last count she had completed four paintings and was looking forward to doing more tomorrow. She won't get anything to eat for at least another day or two, and won't get solids for about another week. This is probably the hardest part of all since she has always loved her food, especially her pancakes and scrambled eggs. She is getting nothing by mouth at this point in time, and didn't say a thing about it today. She is so tiny, I worry about her losing weight. She barely hits 30 pounds and at 6 years old there is none to spare. She is quite tall, but has always been very tiny due to her being such a busy girl. I know she will rebound quickly once she is allowed to eat, but until then we just keep hoping and praying she won't lose too much.
