[/caption]So here is my favorite hospital e-mail I sent out during our last hospital stay. The e-mail just flowed out of me at the time and as I read it now I feel completely amazed. Amazed at Ellie, amazed at her body's ability to overcome, amazed at all the wonderful support we had while she was in the hospital, amazed that we all survived to blog about it.
At the time I wrote it, Ellie was intubated and sedated after her severe seizure during her second hospital stay. She developed pneumonia in her lungs during the seizure, so the tube was helping her to breathe. We had just discovered that Ellie was experiencing Diabetes Insidious, which is basically where you are urinating out your water (not diabetes that you can't eat cake, though, thank goodness!!) Here's the e-mail I sent:
Hey all-- It has become very apparent after our last experiment with vasopressin that her body is not producing it at this time. The plan right now is to do an MRI in the morning just to get a clearer picture of what is going on in her brain (and to do it while she is still under sedation). She has been more restless with the sedation the last 2 days, coming out of it, trying to sit up, opening her eyes. So it actually seems like a good time to be discussing extubation. Her lungs are looking better and she continues to be weaned from the tube to her own breathing. The plan is to extubate her tomorrow afternoon (unfortunately during my shift at the hospital, I think this would be better job for Dr. Daddy. I guess I will just have to call in Super Mommy to do the job.)
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[/caption]The entire endocrine team at the hospital sat around for an hour discussing Ellie and exchanging ideas of how best to treat her. That is pretty astounding having all of these brillant minds collaborating on our daughter. Over the next few days the endocrine team will be coming up with the amount of sodium, water, and vasopressin (through the G-tube, Thank God! They were talking about using a nose spray for the vasopressin which I didn't think Ellie would appreciate at all AND would encourage Ben to stick things up his nose...not something we wanted to deal with.)
So everything is moving along here. Before we were in the hospital, we had Ellie's sodium level checked. It came back that she wasn't needing as much sodium as she had needed prior to surgery. I shared this with Ellie and she looked at me with those eyes filled with wisdom and said, "Now, why would that be good?" What a response. Because to her it really doesn't matter if we give her more sodium or less sodium through her g-tube. Our goal is for her to feel good and whether that means giving her sodium or water or vasopressin or yellow jello it doesn't matter.
[caption id="attachment_238" align="alignleft" width="300" caption="Squishy cheeks"]
[/caption]One day when I was with Ellie in the hospital she started to feel nauseated. You know how awful it is to feel nauseated (and if you are pregnant, I am sure you have had some recent experiences with that feeling.) She said to me and to our rockin' friend Cynthia, I want EVERYONE to feel good. Even in that moment when she was feeling crummy she continued to want EVERYONE to feel good, not just herself. I say this because I know even though she is sedated right now she wants YOU to feel good right now even while she is in the hospital. Ellie is amazing and strong and stupendous and fabulous. I know seeing and hearing about her going through something like this can be maddening and saddening and a whole myriad of crazy emotions. I invite you to fully feel that sadness, disappointment, frustration, anger or whatever combination you may be experiencing. Then, I invite you to have the most fabulous best love-filled day that you could possibly have. Because that is exactly what Ellie would want you to do. She would not want anyone wallowing in worry or fear or sadness in her name. She would want everyone to be hugging and loving and having the most favorite day that they could.
Shine on--Debi
So can't we put this last paragraph on banners and fly them from airplanes in the sky so that the whole world will remember to have their favorite day! It is easy to forget to remember how blessed we all are and especially how much we have learned from Ellie's experiences. thank you for reminding us.
ReplyDeleteLove and hugs to you and Ellie and Ben and Thom.
...and can't we make: "What Would Ellie Want (or do)?" into a bumper sticker?
ReplyDeleteIncredible. I remember so vividly that moment with her in the hospital saying she wants everyone to feel good. What an old soul she is.
I am so glad that you were there to share that moment with us, Cynthia, it sure was an astounding one.
ReplyDelete