Hey guys. Yesterday was a very eventful day for the three of us. The morning began with Ellie being taken off of her paralytic, again. Matt and I were a little alarmed by this at first. Don't get me wrong, we don't want her on it all. We just know that until something can be done to correct her airway the possibility of her having clamp down episodes when not on the paralytic is very possible. However, the reasoning yesterday was because she was only a half dose of the paralytic and pretty much awake, how fair or how frustrating was it to her to not be able to move if she wanted to. Could you imagine being able to look around and hear things and not react with your arms or legs or mouth? No, I wouldn't want to be that way either. So, the paralytic was turned off around 9 that morning. By about 11:30 we were already starting to see Ellie awake and more like she was a couple weeks ago. It was so sweet to see those eyes open and not be so groggy. However, with this she was clamping down pretty much every time she was awake and needed an extra dose of her pain and sedative to calm her back down. These extra doses were happening about every hour. Not a good thing.
When Matt and I finally headed to the waiting room to have lunch (we don't go very far from Ellie at all anymore), her nurse yesterday came out and let us know that since she was requiring the extra dose of medicine every hour, the were going to restart the paralytic at a full dose and her full dosing weight. Before they took it off yesterday morning, she was on a half dose of the paralytic and was not dosed at her correct weight. We threw they rest of our food away and asked for a few minutes with Ellie before they restarted the paralytic. When we came back in the room, she was sleeping and was pretty comfortable. We talked to her and Matt took some pictures. Then, Ellie began to wake up again. Her eyes were bright eyed and she was just looking at Matt and her mobile. Her mobile is a whole other story. She loves that thing when she is awake. It was going yesterday and I tried to look at her and tell her hi and she started crying. As soon as I moved and she could see it again, she was just fine. Makes a mommy feel so good, doesn't it? I love her little personality. So, when she was awake again, I decided to let let Matt have some alone time with her. He needed it. He is such a good dad and so protective of her. I couldn't watch her be paralyzed again. It hurts too much. No parent should ever have to see this happen to their child. It's something I won't describe.
About an hour later Matt called and informed me that they had decided to hold off on the paralytic. Ellie was seeming more stable and they wanted to give her more time to get adjusted. She was seeming to do pretty good at this point. Her night nurse came on and we stayed with her and Ellie for a little bit. We then decided we were going to go and get some dinner. We checked in on Ellie several times while we were eating and she was doing ok. When we made it back to the hospital, on the way to check in is when we got the phone call, Ellie had clamped down again and was not coming back up. She had been like this for a half hour and things were not getting better. Matt and I hurried back there and at this point held her like we are able to (which is putting our hand on her head and hand on her feet) and were informed that they had to start the paralytic drip again. We knew it had to be done, but it is SO hard to admit that. It's so hard to see your child this way. I am not sure if we have told you or you realize that Ellie is been paralyzed over half her life now. That is not the best or most ideal situation. Another thing, we had to watch our baby girl be paralyzed again. It's horrible. I won't describe it. Honestly, I can't. So, late last night we again watched our little girl go in to what I think of as dream land. Easy for me to say, hard for me to think about and see. I know it's whats best for her until the doctors come up with some sort of plan, but it's so hard to sit and here day in, day out and feel like nothing is getting accomplished or done. It's just a hard feeling to describe.
So, with that said, I would ask for your prayers. Prayers for Ellie. Prayers for Ellie's doctors and nurses. Prayers that they would have wisdom and guidance in their decision making. Prayers for Ellie to get stronger and to be more healthy. We know with God, all things are possible. Even on the hardest of days, I do my best to cling to that. I have to. On days like these, it's the only way to get through the day.
Another thing I would ask of you all today with children, look in to their eyes. Deep in to them. Cherish those beautiful eyes looking back at you. Every time I get to do that with Ellie, I cherish it. They are precious moments to me. Beautiful eyes that her mommy and daddy love so much. But then, we love everything about our Ellie.
Thank you all for everything.
Love,
Ellie's Mommy
