Thursday ... We went to the new nephrologist today. We could have seen Jacob's but she was out of town and this one could see us less than 24 hours after our inital call.
I always think it's hard meeting a new doctor ... they have no perspective of us. There's no context. I don't know their abilities. They don't know about my ridiculously accurate gut. They dont' know how hard we've been fighting or what we've tried or how many things I've caught. We also usually have 15 minutes at most and that isn't enough to cover the emergent things, much less offer any perspective.
THIS IS HARD. And I think it's hard for them too. It's like dancing with a new partner. It just takes a few times of practice to flow together.
So today ... we saw a new doctor. And given the above situation, we did alright.
Basically no urination in 3 days. This was not addressed today directly. I said that I felt he was dehydrated. I think he needs more fluids in his TPN. I dont' know why he is needing extra fluids, but my guess is he is. She agreed to add more fluids. Now, that's great. But what if I'm wrong about the reason he's not urinating? And how long will it be before he gets those fluids? We just got our week worth of TPN tonight. So theoretically they won't give new formula for a week. Wondering if there's a second way of adding fluids. BUT ... no one is working on that since the doctor wrote "add more fluids" and knows it will happen but has no clue it can't happen until next Friday.
Kidneys and kidney function not specifically addressed.
Anion gap, not addressed.
What she was very concerned with was the horrible butt rash he has that he's had since mid December. She is wanting to be aggressive which is great, but what she wants to try is not going to work in my opinion. I'm willing to try it in case I'm wrong and it wont' hurt him if she's wrong. So no biggie. And once the rash is cleared, she wants to do some follow up tests to see if he is metabolizing the TPN. (Something I'm greatly interested in knowing!!)
And she addressed the issues with the TPN and the weekly labs. A funny thing is ... GI doctor had written up some lab orders to do the next time we draw labs. I took those to the Nephrologist so she could see what was already ordered and order more if needed. The Neph said, "The GI is on the right track with these labs. I can see what she was thinking. Good job." and I sadly had to inform her that all of those labs were MY idea! lol From the research I have been doing, these labs should have been done already. Some periodically and some regularly and they have never been done. Nevertheless, they will all get drawn on Monday so all is fine.