Thank you again Everyone for another amazing blood drive. I get the chills just thinking about all the good that will come from the blood drives.
I love that I can call the hospital any time of the day or night and talk to the nurse caring for Alice. I can get all the information I want and need to know when I am not able to be there. I have called on a few occasions in the middle of the night because I couldn't sleep, usually I feel better and am able to sleep after checking in. Today Alice stayed awake for most of the day--hopefully she will have a good night. She received more platelets, and as of two days ago requires a nasal cannula to help keep her oxygen levels up. She moves around the bed so much that the blow by doesn't help much--plus it's so loud.
Last week she started having some respiratory issues so we began using a nebulizer. It has seemed to help. Beginning today she will receive less albuteral (nebulizer). I feel like her lungs will not receive complete relief until her own attacking antibodies have died off.
Alice is so funny, she is miserable but willing to do everything she is asked to; the mouth washes are so painful, but she opens her mouth for the nurses without hesitation. She even tells them thank you when they finish. This alone is a huge blessing for us. This whole experience would be more difficult if she weren't so helpful.
She has been retaining a lot of fluid, you can see in her pictures that she looks a bit puffy. She is now on some medicine that will help her body rid of the excess fluid.
As for home, things are moving along. Even though it is Saturday, we had the children do some school work. I must have made it sound really fun, because they were on my case all morning to do school. Finally, I managed to accomplish a bit of school. Recess was decided by Matthew. We pretended to be Rocky Balboa and the Russian while listening to "Eye of the Tiger". I told them not to punch very hard...Blair got me pretty good though. Thanks to Tyler, he has been teaching the boys how to box. I really don't like the idea.
I finally decided to unload the car from when Natalie came home...(a week later) oh well! We have been playing so much, there was no time to do much else. I wasn't too anxious to be productive anyway. Usually after hospital stays we just crash and accomplish little.
It reminds of the when Evie was due to be born, both Natalie and Alice were in the hospital. Natalie in the ICU and Alice in ICS. During hospital stays we are all mostly running on adrenaline. Going into the third week of hospital life and being 8 1/2 months pregnant was a challenge for both Tyler and I. Tyler trying to keep his business running, and me trying to NOT have a baby at a children's hospital was quite an act. Finally, on a Monday morning I went home to find some rest in my own bed. Not realizing just how exhausted I was, Natalie asked the nurse to call me, and all I remember was her saying, "Mom, when are you coming, I'm all alone." I wanted to cry, because I felt so helpless. I think I told her I would be there right away. Next thing I knew, Tyler was home from work and I could hardly move. Needless to say, Evie was born that very night. Once my body was able to rest she came. I hadn't been at the hospital for an hour before she was born.
Looking back at that experience, I've discovered some great blessings. One being that Natalie grew a lot. She seemed to have matured quite a bit during that stay. She became less afraid of the hospital. I think it was helpful for her to realize that she can do it. Just like anything, when presented with a challenge...we arise to the occasion.
Here are a few pictures Grandpa took of Alice.
On Monday, Natalie has another appointment. I had a little talk with her about being kind to the nurses and doctors even if she does not want to be there. They are our friends and have helped us so much. She agreed to be happier. We'll see come Monday. ;)