The Plan (For now anyway)...

Six weeks!!! This is our longest stay to date at Childrens. Unfortunately there's not much new to report... James is doing about the same... Still over loading on fluid, docs are trying to get him balanced, but every time they do, it seems another problem arises... This week it's his kidneys... Numbers are high, which means his kidneys are "dry" or dehydrated, even though his lungs are filled with fluid... So, now we are cutting back on the diuretics, which means, maybe he'll get more fluid on his lungs... But if we don't and his kidneys get too dry, that's a whole new bag of worms...

His red blood cell levels were low again today, if they stay low tomorrow, he will be getting another blood transfusion... Anybody A+???

I wish I knew the answer to just get him where he needs to be... I think the more the docs "try" new things to understand his little body, the more he gets behind on recovery... They have also talked to us about maybe this being his new "well" and that he won't get better than this to be able to go home...

So they left Joe and I with the decision of trying to get through this and staying in the PICU, or, putting him in a room upstairs and keeping him comfortable until he can no longer fight...

As of now, Joe and I have decided that he still has too much fight in him to give up... So we have told the docs we want to give him his own time to recover... He may take a little longer than the average baby, but I think the more we push him on their timeline, the more he regresses... So we came up with a plan today with the new docs that took over (residents change every month) and I hope they continue to listen to our wishes as to indicators that James is ready to try new things... So far, so good, but today was only the first day... We'll see how it goes... Wish us luck...

Love to all,
Nichole