Friday, September 04, 2009
Doing well and going home?
Ellie has been doing much better in the past two days. We got the right sensitivity for her UTI and weened her off of all pain meds. She has been up and moving. We took a big wheel ride to the garden and playground yesterday and today she has spent most of her time in the playroom.
We talked to Dr. Jennings about "the plan" for her feeds. He wants us to do as much by mouth as we can. Then supplement with the feeding pump. The goal at this point is not to ramp up her feeds and get off of TPN, it is let her bowels wake up and recover from the insult of the stricture. After a week or so we will start pushing and see how she does.
We thought we would be doing a slow ramp up over the weekend and then go home on Monday, but after talking to Dr. Jennings this morning, we are looking at tomorrow morning as our possible discharge.
We were surprised but also very happy. Hospitals are dirty places and we would like to get out of here before she picks something up. We do have to go home on IV antibiotics for her UTI. IV antibiotics since she is not really eating yet, and because at this point she may not absorb enough to make them work. This means we need our first "teach" on how to do antibiotics at home. Everyone was shocked when we said we didn't know how to do it and I think we have knocked on wood 50 times already today when we explained why.
Ellis hasn't eaten in 3 weeks so her bowels are going to need time to get moving, and time to regrow all that fantastic short gut lining of her small bowel. ( the absorptive layer of short gut bowel can be 3x the thickness of typical bowel) Give her a few weeks, and assuming this surgery was successful, then she should be back to her old self. I am very excited to get her home and do the recovery at home.
School starts next week and we have not been mentioning a date since we didn't' know if she was going to make it. But things are looking like she will be starting school with all the other kids. She may not be eating, but she will be there.
I will update when we know more.