We are Home

And VERY exhausted. I sure did not expect to stay this long. I truely thought we would be out by Friday the latest. Should have learned by now. The week started out pretty good with Avery not needing to be sedated and getting some answers from the testing. He kept running fevers so they were needing to check labs to make sure his line was not infected. I think he just had some virus that was everywhere in that hospital.

We are in a major catch 22 now. Currently, Avery is getting all of his nutrition from the IV (TPN)and like I have said in the past, this is not something you want t be on longterm b/c it can kill the liver. So the goal ALWAYS is to keep feeding the gut with the feeding tube. We tried the one med. Avery could you and it was a total bust. After only 2 doses he was screaming in pain for a couple of hrs. So needless to say he will not be taking that. So we are left with nothing to help increase his feeds. Metabolism also informed me that he is at his maximum calories on his TPN.

So what does this all mean in laymans terms? We are screwed if Avery cannot gain weight on his new TPN. Or if by some miracle he starts tolerating more j feeds then we are in a better place. ALso he is severely anemic and this is why he required a transfusion. Because he is not getting formula in his stomach he is not getting the iron he needs. We are trying to give it in his stomach to see if that helps but we all know what iron pills do to your system. So we will see how long this lasts without its own complications. This would mean that he would need to get regular blood transfusions or IV iron infusions which we are debating about.

Basically we give him meds to help something, then we have to give another med to offset the side affect of the med. we just gave. It is sooo very frustrating. I am just praying that he is able to gain and get the adequate nutrition on his TPN and slowly increase his j feeds. Just one day at a time I guess.

I have not mention that during this whole time, Isaiah has been home sick as a dog. He has a nasty cough and the ped. who I think is clueless and useless at this point would not call anything in even though I was just there with Isaiah a week ago. Knowing that I have been in the hospital with Avery. Grrrrr.

I am leaving in a couple of days I will be safe :) as I am getting people asking about the whole drug cartel thing. We are 4 grown women not spring breakers. We will be fine. Just cannot wait to sit on a beach.

Thanks for all the prayers.