update!!!!

Ciao a tutti, we are in a new reality now. The kidney doc told us 2 days ago that her kidneys are not responding well to dialisi anymore. She started intervenes feeding one week ago and it is giving her nutrition but with her body basically shutting down it is relative what this will do. The doc in fact told us ,and her, that he thinks she has 2 weeks if all goes well, meaning no complication. On the other hand, its a mystery and maybe she will go loner but the reality is that this is not going to get better, she cannot eat anything, she is managing her pain with a self regulator morphine and she is still pretty lucid when shes not sleeping which is often. But she is getting confused and has had hallucinations , we are hoping that this will all play out with some equilibrium. We are always there and she is aware of what the doc told her ,she had a heavy heart and tears with not many words to follow. Meanwhile we are enjoying being with her as much as possible and ,..the rest is still unwritten.......Sorry if this may seem confusing ,we will let you Know ,it is not shocking and yet it is !!We send love.

Update yaffa!

Ciao a tutti! We have spent the most intense last 2 weeks if you can imagine that. For a series of events , a little over 2 weeks ago we had to stop completely with the tube feeding. She was in a lot of pain and not tolerating the intake of food. After some more tests we established that she has an "ilius" of the intestine, and basically this means she has a very hard time with anything going in. So, they decided to pump everything out of her stomach. With a bigger tube in her nose they are able to slowly pump out. Meanwhile its been over 2 weeks of no nutrition at all ,just liquid intervenes. She had a little less pain but she also started to really loose energy and has spent all this time mostly sleeping. The docs explained that they were hoping to start tube feeding again but all signs show she cannot deal. Last resort ,something we had discussed earlier on and were able to avoid, now is a must. Intervenes feeding. This is the last resort for her to get the nutrition she needs trying to get her stomach as empty as possible and letting her intestine relax. It is very high risk for infection, it could fatigue the liver to the point of having to stop ,and it could also have other complications on the pancreas ect... On the other hand not doing it means certain death.Anyway, she is very aware of all of this, although after more then 2 weeks of no nutrition and pain medication she did have moments of mental confusion, some hallucinations, and anxiety. But, she is aware enough to know whats going on so yesterday the "pick line" was put in to start the intervenes feeding. They say it will take at least 1 week before we will see any changes. In the meantime she sleeps a lot, too weak to even speak. The only good news is she is in a little less pain, and sleeping is helping her cope.Unfortunately, it does not look like leaving the hospital will be realistic for a very, very, long time if ever.So, if she has no complication we are looking at some improvement, more energy, maybe eventually more physical therapy, and maybe she will be able to turn the feeding off at night and have a little food during the day just for the pure pleasure. If she can tolerate it ,if not the intervenes feeding will be her source of nutrition. She is still dialisi 4 days a week and considering that everything is relative ,and you can get used to anything, this is the good news!Now it is truly a day at a time, we shall see, hopefully she will be stronger and able to move a bit and this should all start happening soon. Meanwhile we are carrying on as best as can be expected and really hope to give you all better news very soon. We send love and thanks to all of you and hope to see you soon.Orly, Miriam ,Dylan