Last night was a very, very long night. It was just me and Claire in her hospital room after 9:30 pm. She went to sleep in the bouncy chair and I thought we were in for some good sleep. But at 11 pm on the dot, she woke up crying and upset. So I changed her diaper, asked the nurse for some pain medicine, and tried to feed her. In the middle of feeding Claire, they had to get her weight. So she was even more upset with me after that. I kept trying to feed her knowing that the way we would get home quicker is for her to be eating well. I went to burp her and as I did, she vomited all that she had eaten (and felt like more) all over me.
This made her even more upset and sore. The nurse decided to give her some Zofran for the nausea. I knew it was my fault for moving her all around to quickly after eating. But I feared they would take it as a set back. Instead they just increased her IV fluids and told me to just feed her what she wanted when she wanted instead of trying to get her to eat her normal amount. This seemed to work the rest of the night as she didn't vomit anymore.
But the AC in our room didn't work yesterday and all last night. It would be like 80 degrees if we shut our door. Maintenance came to try to fix it, but couldn't. So we were sweating in our room. We had to leave the door open to be able to get some cool air. This wouldn't have been so bad but our room is directly across from the ice machine (you'd be surprised how many people need ice all during the night!), the hall bathroom, the linen closet for the floor, and the pyxis system (the medical cabinet with all of the medical supplies). So whenever one of these things were in use, we were awake. So total we probably slept a total of 3-4 hours. Not enough.
So as the morning went on, Claire ate more and they have said they were going to take her off the IV fluids but they have not done it yet. They have also discontinued her oxycodone and decreased her Tylenol. The hope is that we can go home tomorrow. We are working on trying to convince them to take the drainage tube out tonight. It's just draining out all around the site and onto Claire's diaper and our clothes. It's red and sore. It doesn't seem to be even draining into the actual tubing. But on the floor, things don't get done like they do in the ICU. So we are STILL waiting.
Claire has been having good diapers today and actually played in her bouncy seat some like at home. So that's a good thing. She has been able to get some good naps today, so I hope that means a good night. We also got our AC fixed in the room, so maybe we will sleep better without being hot. Claire's blood pressure has also been a little high today. I am attributing this to being uncomfortable and tired.
They weighed Claire last night and she had lost about 1 pound since the pre-op day. I figured she would lose at least a pound with all the liver fluid and and liver tissue that they removed. So she's back down to about 13 lbs. Claire still seems sore and cries a lot. But we think she would feel much better if we could just get home. I know it will be a LONG and trying ride home in the car. But if we can just get there, maybe she will feel better in her own room, home, and crib.
Thank you for all of the continued prayers and concerns. We are truly grateful for each and every one.
The Scott Family