First, I have it say that in the days leading up to this surgery, Brad and I pulled out my blog book from 2011 and read the posts from the last reconstructive surgery. It was hard to read the emotional stuff knowing we were about to start again, but it was also so helpful to read what happened day to day as far as improvements, and what medications worked, etc. I find this blog is such a good outlet for me, but is also such a good record in case we find ourselves back in the same boat we have already been in.
Today has had its ups and downs, but there have definitely been improvements. She is no longer on the ventilator, and when awake and alert she is also off oxygen. We have been able to switch back and forth between the humidified collar and a HME which gets the really big tubes off her face so she can move easier. We have been able to hold her a lot which we have all really enjoyed. She has been off the sedation medicine so she is very much alert and aware of what's going on, though physically she is very weak. It's still really hard to tell what she is saying sometimes, and she gets frustrated pretty quickly, but overall I've done really well with reading her lips and knowing what she is trying to communicate. She has told me several times today, "I don't like this mom" "this isn't fair" and "I don't want to be here" but she has also said sweet and happy things like, "I love you mom" and has been incredibly understanding when I explain why we are here and what we are doing. She is so mature, everyone comments on how well she cooperates and how well she is handling all this.
As far as pain control, they have kept the rotation with Tylenol and Toradol pretty constant every three hours. A couple times today she was also given a dose of morphine because she was in pretty bad shape. It's so nice that it starts to work very quickly. She also had to get an anti-nausea medicine because she had some bad dry heaving spells for a bit. That was horrible to watch her body trying to vomit while she has a huge tube through her nose and down her throat. Fortunately that medication helped and she hasn't had more issues with that.
She also started getting some formula through her feeding tube around mid day. I think that has really helped her feel better too. I'm sure all the medications she was getting on an empty stomach weren't helping her to feel too good.
She has been able to start to stretch her body a little. She wanted to stand up on the bed, and she also got up to walk to the potty once too.
We have been watching shows, reading lots of books, and at one point she even wanted to play Legos. I did all the building, but she would choose the picture from the instruction book that she wanted me to build. She loved getting each set up to look just like the picture in the book.
At one point I asked if I could take her picture with what she built. She said yes and then she even tried to smile a little. Sweet girl.
Based on the day we have had today, I feel like it will be a better night tonight. Hopefully we can all get a little sleep. Brad and I will still need to rotate so one of us is awake to see if she is awake and needs something, but I think it should go much better than last night. In the gift shop, Brad found a little toy with a bell in it. He gave it to her and said to shake it loud if she needed something and we couldn't hear her. It was such a great idea and I think it gives her comfort knowing she can be heard on the off chance that we aren't noticing her awake.
Everyday has it's hard setbacks, but overall every day gets a little easier. It's always one step back, but two steps forward and I'm grateful for that.
Stephanie sent me a few pictures of Bentley and Olivia today. I heard they had another fun day, and based on the pictures, they appear to be very happy. :) I miss them and look forward to seeing them soon.
1 comment:
I am glad she is able to move around enough that you guys can hold her!! Yay!! That has got to be the best feeling for her to be in your arms and feel safe. It's probably therapeutic for you and Brad as well. Getting a toy that makes noise was a brilliant idea!! Not only will you hear her well but it gives her something to control in such a helpless position. I loved seeing the happy pictures of Bentley and Olive. What a blessing to know they are happy and doing well.
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