Friday, December 27, 2013

What a crazy day... Our first night at duke was rough...they do vitals every four hours and then she was evaluated eating at 430 this morning... So overnight they did the first urine analysis... And the way they did it was by putting cotton balls in her diaper... Which I didn't even know they could do... But it came back unusual because it has looked quite clear meaning that her urine is not as concentrated as it should be...they then had to run it again, and this time she had to be bagged..just like at UVA, it only took one time but again it was clear, and sure enough it came back the same... they did it a third time by a cathater, and it still looks like water, but we are waiting on the results, but more than likely we will be seeing a renal doctor... she has had different problems with her urine before, at roanoke there was "cast" cells, which is why they did the kidney ultrasound (which was fine), then at UVA she had reducing cells, which means glucose in her urine (but second time they did it was fine), so we don't know why she is having so much problem with her urine, especially with the amounts she is eating..they did do a heart ultrasound today, and the person who did it said it looked fine, but still waiting on the final reading by the radiologist...she did weigh in at 8.5 oz this morning at 8am which was a 3 oz gain which is good...overall through our journey she is making her own growing curve which is reassuring even though it is under what its suppose to be...so as long as she continues to go upwards that is what we want...we have mentioned that we want all her bowels checked but they haven't mentioned doing anything with it yet... they have noticed that she is getting way to much protein from the formula...which is making her kidneys work harder than they are supposed to.. so they are going to start her on a 24 calorie diet, and if she needs the extra calories then they can add stuff to the formula, like cereal or fat tablets to help instead of piling on more protein... we have been able to walk around the unit, and all the windows are painted and she loves to look at them... we did see a geneticist also, but right now she didn't have any more ideas on what to do..i think that sums up everything of our crazy first day, but as always ill post every night...