Ellis is resting well today after a rough start to the week yesterday. Before she can have surgery for her feeding tube, she had to have a 24 hour probe test in her stomach, which kept her very uncomfortable and made it harder for her to breathe. She handled it like the strong little girl she is. I think it might have been harder on us than on her. But the test is over now and she has been sound asleep all morning, catching up on some much needed rest. Our little wonder woman.
I have been asked many times lately how much longer we will be here and how we are holding up. We still do not have an estimate of when she can leave the hospital, nor do we know when her next surgery will be or what will need to be done about her breathing issues. At times the slow pace has been discouraging and the uncertainty frustrating. Yesterday after watching her struggle all through the day, I was exhausted and disheartened that we still had a long time to go before she would be able to feel better and rest well again. I took a break from watching her and went to the cafeteria for a few minutes. On the way down the elevator, I met and began talking to a lady whose little grandson was having brain surgery here that day, the first of many it sounded like. After that first surgery, they would have to wait for his next seizure and do more testing. Then when I got back to Ellis's room, I walked in on two nurses discussing the little baby in the room next door, who is "a DNR," meaning they will keep him comfortable but can not do any more. I have many encounters everyday here just like those. We pray daily for all the little children here who need healing and for their families. And even on bad days like yesterday, I am reminded that we are so blessed to have our little girl and the promise that we will be able to take her home, whenever that is. We are so thankful that there are solutions to her problems, even if we are uncomfortable for the present time. We know God has his hand on Ellis and is in control of her life and ours. Love to all of you who have been supporting us and praying!
I hear ya. The only time I have been to a "children's" hospital was to see Ellis. The hospital is huge, the parking structure goes on and on and around and around. And there are people everywhere. It was almost overwhelming to think there are that many children who have medical problems. And this is just one hospital; I know there are many all over the world.
ReplyDeleteYou have such a wonderful attitude. I know Ellis is soothed by your calmness.