I feel like I have watched the seasons change looking out of our hospital room window. The leaves are past peak now and some of the trees are bare. It has most defiantly gotten cooler as we see people wearing warmer clothing. However, in Lucy’s room it feels like the tropics, everyone that comes in comments on the change in climate the moment they enter our room. They have turned up the heat in our room in an effort to keep Lucy’s body temperatures up. Our girly does not like to wear any clothes, she is hypersensitive to any weight on her body which includes clothing. Thankfully she will wear a hat and a pair of baby legs leg warmers but no socks. What can I say, our girl is all about the accessories!
Medically speaking we had a quiet day. The on call doctor came in to check with us this morning and talked to me about Lucy’s J-tube placement. At first glance it looked as if her J-tube had migrated up and into the stomach, but after much debate they do not feel that to be the case. Lucy’s anatomy is a bit unique, big surprise, and because of this it makes it look as thought the tube is feeding up and into the stomach. If this was the case then we would be seeing all of what we have been putting into Lucy’s J-tube come out her G-tube drainage bag, we are not seeing this. She also added Senna to Lucy’s prescription regimen because until Lucy’s gi tract starts working again we can not use Miralax. It was decided that we would start Lucy back on 1/4 strength Elecare at 5 mls/hr and work our way back to 1/2 strength at 5 mls/hr in morning. I’m Looking forward to talking with Dr R in the morning.
The kids came to the hospital with all their Halloween gear and pumpkins today. Since we could not carve pumpkins together at home we did it here. I was actually surprised to see how quickly things got done. Lucy seemed to enjoy all of the activity and the kids had fun carving and getting ready. Sophie was a wee bit whiney (I may be underestimating this a bit) again, I know she is struggling with all of this change.
It was really difficult to wave good-bye to all of the kids tonight as they were leaving to go home and Trick or Treat. I wish that we could have been all together as a family this evening. These are the moments that make this so real. I hope and pray that we will be able to take all of our kids Trick or Treating next year.