Well that was a week!

Where do I even start??

Let's rewind 2 weeks. Evie started her appetite stimulant medicine and it did nothing. If anything it decreased her appetite. She was a cranky tired mess. We stopped it before going up north last weekend.

When we got back we called Children's to go ahead and schedule the G tube. The nurse called us back and said they are not doing a G tube. They will only do a NG tube. We explained why we felt that wasn't a good idea considering her age, her oral aversions and her sensory issues. Plus going to school in fall. She said most kids do fine. (yeah lady, let me shove one down your throat and see how easy it is!). Then she made up every excuse in the book. It would take too long to get in. Months probably. Then she said it's a major procedure with a lot of complications. It's not. It's a fairly minor procedure and the NG tube has lots of complications as well! Then she said she's too underweight to go under general anesthesia. That's interesting. She had it 3 weeks ago and did just fine. Patrick told her we are not doing the NG tube and will call her pediatrician. The GI nruse did not like that!

So we called our pediatrician and he agreed an NG tube was not the right choice. He said Children's told him they woudl do a G tube (the same thing they told us). So we were confused. He said he'd call Dr Goday and talk to him. He said to get a hold of Madison's Children's Hospital and get her going there. Patrick talked to the nurses and scheduling there to get her set up. We had no clue how we were going to pull off going 2 hours away for appiontments, being admitted etc. Where in the world would sophie go and how would we pull off working? I was very upset.

He called back and said Dr. Goday seemed to agree with the G tube but to call him. Patrick called him and he called back and said he was fine with a G tube and to skip the NG tube. He said he could probably get her in very soon (maybe 2-3 weeks). So much for the "months" thing.

We are mad because it sounds like the GI was fine with this all along and the nurse never even asked him and lied to us. She made us go through all that stress thinking we had to go to Madison, made us waste our ped's time and the GI's time. We are filing a formal complaint about everything she's done after this is over.

So Dr Goday has to figure out scheduling but can get her in soon. We go on Monday for our little "class" on how to take care of the tube.

I'm nervous that this is becoming real though. I mean your child has a perfect body and I feel like we are scarring her for life. Even though she needs it, it is still hard. Because it's still something we are doing to her :( Plus our lives are going to change drastically. A tube fed child is not a regular child. They have so many other issues. So please pray that all goes well during surgery, that she has very few complications and that she grows and thrives with the tube. Thanks