Day of life #49

Madeline is currently crying in her father's arms- Poor thing- She has been pretty crabby/upset last night and today.... Got her Renal panel today- her createnine is 3.57 (i think or something close to that). The Nephrologist said that this is good but that we have to watch her trend as her trend over the last few weeks has been to go down then up-so we will have to see what it says on thursday and if she goes down more.

We are talking about possibly going home next week- we were hoping this week -but we waited this long what's a few more days ! :) The Dr. believes we are close to getting her blood pressure under control -they would like to get her medication schedule to every 8 hrs instead of every 6 so that it will be easier for her to maintain at home. She wasn't able to take 100% of her feeds yesterday so the ng tube stayed in- but she did pretty good- So far today , from 12 am she had only one feeding where she did not take a full bottle. I am hopeful she will be able to take them all 100% of the time here on out but we will learn the ng tube anyways today.

The nephrologist says she will probably get renal panels every two weeks after going home for a while--- he said that whenever she has to go back on dialysis she will also probably have an in home nurse to assist with the dialysis.

We are hopeful for the future-even with the idea of a transplant looming over us we feel confident we can handle whatever God puts our way.

Everett- Have not talked to mom today but I see through her facebook that her family has signed up for a Congenital Heart Disease Walk and they need sponsors to meet their goal- Looks like they are halfway there! Click Here to Donate and help them out!

Adalee- Have not seen mom and dad today but we will be giving you an update as soon as we know how the transition room was!

Thanks all!