Going back on TPN tomorrow. :(

Not much to report...nothing good, of course. The doc called me this afternoon and Kade lost 2 ounces last night which is a significant loss and he is now dumping.  We normally get between 50-80cc out a day...on a bad day, we get out 120.  Today Kade's output was well over that which means he has malabsorption and is not keeping anything in his intestines that helps him gain weight or get nutrition.  The doc wanted to put him on it today, but I begged him to give Kade another day. They started another antibiotic yesterday that is supposed to help him digest his food.  He hadn't even been on that 24 hours.  I wanted them to at least give him a fair chance.

The other big issue with going back on TPN is I feel like he'll never get off.  :((  His liver is already compromised from being on it for 7 weeks and now we are putting him BACK on it.  I am very concerned about the possibility of permanent liver damage or need for liver transplant. This is a possibility for sure. The longer he is on TPN, the more likely of long term liver damage.  However, the TPN is the only way he can gain weight.

Josh and I have thrown the idea around about calling Children's Hospital in Boston.  I haven't done it yet, because I am scared if they say to bring him then I would have to figure out something with poor Kenli and I just can't do that to her.  Totally one of the harder parts of this...being split between kids. You throw the idea up between possibly REALLY helping Kade in Boston or giving him more time here. So I think we will call Monday just to see what they think and if they could help him.

I would tell you what he weighs, etc tonight but I haven't called and I don't think I will. I have cried a lot of today and I certainly don't want them to tell me that he lost again (which I know he did based on his output) and I get more down and won't be able to sleep.  I was trying to make Josh call, but he doesn't want to either.  So, tomorrow when we get there, we will learn the weight and the options we'll have. 

The baby next to Kade is going home tomorrow and I think the one all the way at the end of his room is leaving too. I surely don't want to be there for that! We are definitely seeing people coming and going.  That really SUCKS!!

Well, hope everyone has a good night!

Please keep the prayers coming Kade's way! I am surely ready to give positive news instead of bad news!!

xoxo
G