Nurse or Mother?

We tried our best to have a nice weekend and succeeded in doing nothing. It's so hard to get back into the swing of things after being that long away from home. There is so much to be done here at home as well as getting used to the IV feeds. I didn't know I needed to be a nurse when I applied for being a mother???!!!!! Hey, I never applied, Christina just gave me the job............(Trying to keep a sense of humor as usual.)

Anyway, we've had some difficulties with the amount of fluid that Jack is retaining from all the TPN and we called down to CHOP everyday all weekend. Jack always has this problem with the constant battle of low protein levels which contributes to his swelling. We were able to give him a diruetic to help him loose some of the fluid and against doctors orders, Roy and I decided to not give him his TPN on Sunday night. Jack weighed 16.9 kilo's on Sunday and on Monday morning after giving him the Lasic's he weighed 15.6 kilo's. He lost more the 2 pounds of fluid over night. Tell me that's not crazy. So wether the doctors liked our decision or not, I was certainly glad we did what we did.

We went to clinic yesterday and Jack's labs actually looked pretty good. His potassium level is on the low side so they have to add more to his TPN. So we are waiting on a new delivery with the new formulation. I was all freaked out last night again with the amount of fluid he was retaining and I didn't want to hook him up to the TPN. I called down to CHOP and spoke with the fellow on call, Dr. Carly, who is so bright and wonderful to talk to, and she reassured me that he would be fine. Roy gave Jack the lasic's and thankfully during the night Jack didn't hold on to too much fluid. We need to go back down to Philly on Thursday to get lab's and hopefully his platelet level will be fine. Jack hasn't been making his own platelets and has had to get them once a week while we were inpatient, so we are praying that with the better nutrition he will start to hold on to his and make more.

Thank you for all the thoughts and prayers.

God Bless