up date yaffa

Once again, more of the same. Not really worst, but not really better.Just last week she started again with nose feeding because she is not eating well, not putting on weight and not gaining any strength.It is not without problems they had to stop it a few times, today they will change the quality of the "formula" because her potassium is way too high and they dont really know why. So, then they had to stop antibiotics to find out 1 week later she had a UIT urinary track infection, started antibiotics again then realized maybe its not an infection so stop ed again. She is struggling to do her physical therapy, has been able to sit only little bit @ a time not strong enough to walk and the docs, are still talking of discharge without real reason or improvement. She is still on 4 days a week dialysis and no transitional place will even consider taking her unless she is on a 3 day plan. So we are waiting to speak to the entire team for some clarity any day and meanwhile we keep on keeping on!!!!It is a bit crazy making ,not only her 3 steps forward and 5 back but the docs who cannot stick to a plan .We are looking for some stability before talk of discharge and we have not had that yet. Hopefully she will do o.k. with the tube feeding and gain some real strength and weight. We will keep you informed and forgive us again for not writing more often, it is hard. Thank you all for everything and all the support we surely feel. Hope soon to give some better news. We love you and we will write soon again.