[/caption]Yesterday (Monday, June 14) we decided to go ahead and take Ellie in to get her sodium checked. We were scheduled to go in on Tuesday anyway to get her checked, and we thought that if her sodium had continued to rise, then that might be causing some of her symptoms. Thom said once he started talking to doctors, everyone saw Ellie and it was quickly agreed that she needed to be re-admitted. The general hypothesis was that perhaps she has some kind of infection, so she is now being treated with not one but two kinds of antibiotics. Our nurse yesterday (who just happened to be a previous roommate of our brilliant friend Brittany) tried explaining the different types of bacterias, along with the different types of antibiotics to treat them. I tried to take it all in, but I was totally having a Homer Simpson moment where all I could think of was donuts or music playing in my brain. At one point she noticed the not so bright look on my face and said, "Are you getting this?" I was totally bummed when she asked me that because then I had to admit that, yeah, I hadn't really gotten much of what she said.
If possible, it seems like Ellie is actually doing worse since our admission. She is now drooling, barely able to talk and this morning she keeps feeling as if she has hair in her mouth. Oh and that is in addition to the general weakness and exhaustion she was feeling before. Honestly, I do not recall her ever feeling this bad for this long and being this out of it. I mean yesterday when someone asked her how she was feeling, she whispered, "Happy." In my head I was screaming, "Happy???? She never says something un-fancified like 'happy'!!" And I think any of you who have seen Ellie in the last 6 months know that how she usually feels is "jilled" (joy + filled). But perhaps I always feel like she has never been this bad off? Maybe? I don't think it is over stating things to say she is certainly not herself.The plan is to do a full brain MRI tomorrow (that usually takes 45 minutes-1 hour and is with sedation). Then we will be moved back to the PICU so they can do a pressure study of her brain. Dr. Iskandar thinks that perhaps Ellie is having pressure changes in her brain that explain all of these rather unusual, debilitating symptoms she is having. When we were first admitted, Ellie's body temp was measured at 89 degrees (normal 98.7) and her heart rate was low but her blood pressure was not as low as it had been. One of our favorite endocrinologists came in and said they'd thought that perhaps after Ellie's last surgery, she lost the part of her hypothalamus that controls body temperature regulation which is why we are seeing her body temp so low. As you can imagine, I am just racking my brain trying to put all the puzzle pieces together. It feels like Ellie keeps giving us more and more clues as to what is going on, which also feels like she is getting worse every day (that thought does not feel as good as the one about her giving us clues, so I am working on focusing on that one.)
[caption id="attachment_2653" align="alignright" width="300" caption="Ben being a T-Rex at the Science Museum. "]
[/caption]One of the oncology residents or doctors told Thom that he did not believe we should be under the care of oncology services. The thing is Ellie's oncologist is also the brain tumor expert at our hospital and she coordinates quite often with the neurosurgeon. When I told her, because I wanted to make sure we were under either oncology or endocrinology and not hospital service (which seems to be so much more generalized than the other services that they may not be able to understand the scope and complexity of Ellie), she was appalled that someone would say that to us. After Dr. Pucchetti left, her nurse practioner came by to say that we should absolutely be under their care as we are in here for cancer related reasons and even if we are not continuing with chemo, there is a whole scope of care outside of chemo. Both Dr. Pucchetti and Kristin are going out of town next week, but they assured me that they would send out an e-mail letting everyone know that we definately should be under oncology's care (when we are out of the PICU). We all talked about the importance at this point of having doctors who have a history with Ellie so there is an understanding that her current state is in no way typical. The take-away lesson for me was that we have people here who will definately stand up and watch our backs, we are all on the same team wanting Ellie to feel better as quickly and easily as possible.
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