DAY 60- better explanation

So I just talked to Pediatric surgery and have a better explanation of what is going on. Unfortunately, I have not been well so haven't been able to hear it myself the past few days and have been getting second hand information.

I said that Faith is considered on "comfort care" and essentially that is true. We want to keep her as comfortable as possible. The other part that is true is that if Faith's blood pressure drops, they will not be using medication to bring it up due to the fact that it has too much of a negative effect on her digestive tract.

Now for the part that leads us to why she may be at the end of her stay here on Earth. She has had more blood coming out of her wound-vac and G-Tube site. Because of that, they did an exploratory scope which showed that 50-70% of her stomach was dead. Not good. However, the stomach has lots of vessels that bring blood supply to it, so there is still some hope (although small) that we can get the stomach to replenish itself. That is where hope and prayer come in.

The extremely concerning part is that output stopped out of her ostomy last night. That leads to concern that there is a hole that has developed in the stomach which leads to the even bigger concern that more of the intestine has now died (become necrotic). Surgery is not an option because all of her digestive tract is too fragile and the fact that we cannot give her blood pressure medication before, during or after surgery because it will cause more damage to the areas we are trying to fix. Again, going in that circle.

However, at this point we (and her doctors and surgeons) are not willing to throw in the towel because of two things: one is if the one of the vessels that goes to the stomach clotted and has now broken lose, maybe the stomach will gain the blood supply it needs to replenish itself. Two is that if there is a hole, if it is small enough, it has the potential of closing on its own. We will know if it starts closing if there is output out of her ostomy.

Only time will tell us if there is a hole. If there is she will get bacteria in her bloodstream and become septic. If she becomes septic, we cannot use the bloodpressure medication to help her get through it. Not to mention, she is already in multiple organ failure and sepsis causes more of that.

At this point, Faith is a DNR if her heart stops because we feel that is her way of telling us she is done. She is also DNR with blood pressure medication induced by the physicians.

When to say enough is enough: if her heart stops, if she bleeds more than we can give and/or she becomes septic. We just have to wait it out, which is the worst part of it all and why both mom and dad need to be here because things can change so quickly.

There is minimal hope, but still a small window. If fluid comes out of her ostomy we will be throwing a party! But, at this point there is none and she continues to have blood loss.

Hope that helps explain things a little better and I will let everyone know when we are 100% in full comfort care and have absolutely no hope left. Until then................we Keep Faith and pray, pray, pray.