Something sad and something happy

We have to switch nostrils when using the NG tube. We did it last week and this happened (graphic, sorry):

It is never fun to do this. We have to check for placement to make sure it isn’t in her airway. Well, we weren’t getting drawback on it and she seemed really uncomfortable and so I nervously pulled the whole thing out, thinking it could be in her airway. That meant we had to do it again.

Later, when we had to give her the rest of her feed by tube, we first checked for placement, and started drawing so much blood out of her stomach! I am guessing she would have thrown it up anyway, so I was glad we could get it out. With her blood not clotting like it should, I get nervous that she still bleeds from her bottom and when I see things like this.

With Brody getting sick and things being so crazy at the start of this year, I pretty much gave up on trying to plan anything for her birthday.   My mom told me she would take over and do something small for her. I didn’t want anything too big knowing we would see people at the pancake breakfast and I wanted to keep germs to a minimum if possible. My mom ended up surprising me with a beautiful “Somebunny is One” tablescape for her. I hated that she would have her NG tube in the pics, but I knew it wasn’t worth it to take it out, only to have to put it back in, just for pictures, especially after what happened with the bleeding.  

I wonder the kinds of questions she’ll ask me later in life.

Over ten years ago, I gave my mom some Peter Rabbit little teacup stuff that reminded me of a set I had in my bedroom growing up.  She gave it all to Zoe!  So special. 

There were 3 pediatric liver transplants last Friday across the country, and then one yesterday in Indy. I follow their stories. I talk to some of the moms and it seems all are doing well. That really puts into perspective that it could be ANY time. I don’t know why, but I just dread the phone call. We are trying to just not even think about it and just live normally. I think it must be fear of the unknown.

Sometimes my mind plays tricks on me, like “Does she REALLY need it now?!” Especially seeing her happy and wanting to do more. With her first PT appointment last week, she is already WANTING to do the things they set for goals, so that makes me happy. She just has a sweet little personality. Then, I’ll see her bleeding from her bottom, or her green looking eyes, her skin looking so different and I’ll remember that the only way she is going to thrive and get better is with the transplant. She is still taking most of her feeds via the NG tube. It takes FOREVER and I’ll be happy when we never have to use that thing again.  

The boys are good. Keegan had a low fever yesterday and so he rested on the couch and Brody and I played a game we made up called “Grounders and Pop Flies.”

All is good.

Comments

  • Jackie Sloan

    Love and prayers from the Sloan's, Doyle's, and Denning's...and thank you, so much, for keeping us all updated and being so inspirational!

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