I've been wanting to blog about this since Tuesday, but I've been putting it off. I actually thought about not blogging in general. I know it will make me angry. I figure what better day to do it then Friday. Who can stay angry on a Friday.
Two weeks ago we took Lynlee for her scheduled ammonia draw. I nearly threw up when they told me it was 119. We rushed her back in for a redraw and I called Pittsburgh while we waited. The second draw came back at 79. Ugh.. So we done a redraw 48 hours later (on her birthday) and it came at 101. I called Pittsburgh and they said to drive her up to do some labs. Her ammonia came back at 58 and after a few hours in the ER we were released to come home. They wanted a redraw on Friday to make sure everything had stabilized. First draw 131, second draw 62. I called Pittsburgh again and they told me that this is impossible. The body can not fluctuate this much.
So frustrating. What was going on?
So I got online. I started emailing some moms that have hopefully been down this road, emailed the president of NUCDF. Let me tell you, I've learned more from these women than any MD. So after a few emails and answering some questions I figured out something was missing at her draws this week. They weren't flushing it with saline when they accessed her port. So I did some research, made a few phone calls, they made some phone calls, etc..
On Monday I got on the phone with our team at Pittsburgh and told them what I thought was going on. They agreed this could be the problem and I asked to not get Lynlee checked this week. She had just been through so much and was starting to cry when she walked into the hospital! They okayed it.
So this Tuesday we went to have her ammonia checked again. I watched to make sure the saline was used, to make sure there was enough waste, and that the blood was put on ice instantly...
The result 21!
I was happy, but instantly pissed off. Because of one simple little thing (that now I have to watch to make sure they are doing there job) Lynlee had a terrible week. 7 needles to her port, and one long trip to Pittsburgh on her birthday. And it's not just there, we have to watch them even at Pittsburgh. They are especially bad at not putting in on ice instantly. I've made more than one nurse mad, but I'm okay with that.
I feel like when this is all said and done I'm going to make a lot of people made, but I'll be the best nurse for my daughter!