Praise God for Chocolate!
Sorry for the lapse in posting... for me it has been a long, frustrating and emotionally trying few days.
Ellie continues to do well physically as the days pass. She is moving around with a walker and sitting up in the playroom. She even made a couple of craft projects!
Mentally and emotionally have been a different matter altogether. For days Ellie has been - for lack of a better description... numb. The smiling picture that I posted a couple days ago was one of the only brief happy moments that she has had. She pulled into herself and wouldn't talk much - even to me. Most questions were answered with a mumbled "I don't know" and there was no life in her face. I can only imagine what it must be like to be in Ellie's head and have lived through the past three weeks. So much of it is unknown, even to her, because of the drugs... Then this afternoon I was able to have a wonderful talk with her. We talked about what happend to her. She is so sensitive and smart and really does want to know what's going on, so I told her that she almost died. Someway, somehow, in her heart she already knows that. She has to. I told her how pleased the doctors were at how strong she was to fight and get better so quickly. (One doctor today even told me "On March 28, I don't think anyone here thought that she would make it. But here she is and all of her organs are fine... I don't know what she's made of...") I also tried to find out what things she does remember and began to carefully and selectively fill her in on what was going on from our side of things - what was REAL. Her memories are a mix of real and non-real - mostly like a very vivid dream that has pieces of reality interspersed throughout. And there are, I think, blocks of missing time... mercifully. I was able to make some of it light - I teased her about how she got superhuman strength and she just giggled over that! I know that she's not finished sorting everything out yet, or possibly remembering - but she is beginning to. And for that I am thankful, because for the first time in weeks Ellie is really here. She smiled and laughed and TALKED. A non-talking Ellie is unthinkable... some of you out there know what I mean!
I have been fighting some discouragement (which I suppose is an understatement) regarding the process of changing hospitals and doctors. Everyone has been so good to us - it's not that - it's just the whole process... I have counted 5 attendings, somewhere between 5-10 fellows and 5-10 residents that we dealt with over in the PICU. Oh yeah, plus about 5 surgeons... Of those 20-30 doctors, there were only TWO that I can say were following Ellie's case (and staying in contact with us) off and on for the whole 18 days - one fellow and one surgeon (whose contact with us was often through his team, but we always knew he was consulted). And then we left there and came to this hospital where we have so far had 4 nurse practitioners, a team of 3 "pain management" doctors, and 1 attending physician (so far), and 1 psychiatrist, plus our oncologist (who is part of a team of doctors and nurse practitioners). I know that everything was charted properly and they can all read the data and they're all competent and respectable individuals, but yesterday something snapped in me and I lost it. It was all simply too much! I just wanted to look in the face of one doctor and know that he or she was there when Ellie coded... and when she was intubated, and extubated - three times... and when we had to hold her down while she was hallucinating... and when she went through withdrawals... and when she looked at us with clear eyes and smiled... and the list goes on. I was just so TIRED of fighting to be understood and listened to. I actually wished we were back in the PICU. (Yes, I know... the Israelites longed for Egypt too...) I left Ellie with John in the playroom, and left Belinda to unpack into our new (non-private) room and I walked away from the hospital in a fine fury - without telling them where I was going or why. Once out on the street I quickly realized that there was no place to be alone. I didn't have a plan when I left... I just walked away and hoped that something dramatic and helpful would materialize. I actually momentarily contemplated finding a bar (hey - don't be shocked... I promised you guys I would be honest and share with you where I'm really at...) but the image of myself sobbing into a drink just didn't sit right, plus it scared me a little. Then I decided Starbucks was a much saner choice but was too far to walk because by then I was hyperventilating from walking fast and trying to hold back the violent tears that were threatening burst forth all over the unassuming masses. (And quite frankly I'm tired of crying all over the unassuming masses - they don't deserve that...) The image of myself passed out on the streets of New York scared me to death. So I did the only rational thing I could do and went home. How boring! It was, however, the only place I could think of to be alone - and I was lucid enough to realize that it was the safest place to be given my alarming train of thought. Of course I didn't have my room key - that would be too easy. So I had to interact with two people without crying before being let into my room. I promptly threw myself across the bed in a fit of angry tears. And that is how I learned that it is not wise to stuff angry tears that long. I nearly had a panic attack trying to catch my breath. I eventually checked in to let the team know that I hadn't gone AWOL - well I guess I did go absent without leave, but confessing and reporting for duty within so little time should at least count for something! I then just vegged out on the couch and watched TV and ate chocolate. I awoke after about 9 hours of good sleep feeling much better about coming back to the hospital and dealing with it all. Somewhere in the midst of it all (I suspect it was at some point after the little talk I had with God where I appologized for the rage part...) I realized that sometimes there are just things that can't be changed - the process, the not being able to choose who you get to deal with and how well they will understand you. And in times like those, God still makes provisions. True, I didn't go home and read my Bible and pray (things which I will admit are always a great idea) but really what I needed in that moment was for the dam of emotions to break and to rest. And the chocolate was just the cherry on top. I can't tell you how many times I've been thankful that God made the cacao tree!
Today went much better. Things are falling into a rythm at this hospital now and I'm feeling much more comfortable with everyone and everything that is being done. It also helps that Ellie is much more herself. That great big elephant stood up and got off my chest. It's amazing what breathing can do for a body...
Thank you all for hanging in there with us. I love how happy you get over seeing Ellie smile and hearing good news. You are such a part of our lives each and every day. When something bad happens I know that you cry with us and when our hearts overflow with joy, sharing it with you is the first thing on my mind. And when I go into a funk like I have the last few days, you patiently wait for me to be able to express myself again and then you accept me where I'm at. I am so greatful.