Today has been tedious.
We finally got our records from our local gastroenterologist (the one that did the endoscopy.) I fumed as I read the records because it is so far from what happened. Things are so misconstrued I had to double check to see if we got the right chart!
Then we headed to our Primary Care Provider for a weight check. He was just speechless as we laid out the whole story. He said he was embarrassed we had been let down by so many medical professionals.
We brainstormed a few foods to try to get Xander to eat in a last ditch effort to prevent an NG tube from being placed on Monday. He told us he doesn't care what Xander eats. That now calories matter more than basic nutrition. So we'll attempt those things.
Our little Xander is terrified of medical settings now. Even putting a thermometer under his arm is met with hysteria. It is heartbreaking to watch our outgoing guy turn into a fearful, withdrawn child. He all out refused to sit on the examination table today.
Our doctor thinks that Xander limiting his intake is a combination of Xander trying to control the situation due to the pain and trauma and that perhaps he is now psychologically averse to eating.
He explained it like this: If you had severe food poisoning from say, tuna salad, after you recovered would you want tuna salad? Or if you happened to catch a stomach flu and vomited your mexican takeout, would you be in a hurry to eat mexican again?
It was hard to hear and to think that the one thing that every human must do to live (eat) is the one thing he may be truly terrified to do. My heart just shattered in bits as I wondered what is going on in his little head.
I'm so worn down. Brandon is concerned so he called my OB and let them know what was going on. Tomorrow, I have an appointment. Knowing the baby is doing okay, would relieve a burden for me. Would you pray for my appointment tomorrow? I am having an ultrasound and will discuss with the doctor the stress that we are currently under.
The children are returning Saturday! I'm so happy about this. I was meant to be a mama to many. The house here is so quiet and lonely. I am NOT one to look forward to an empty nest.
I can't wait to smother them in kisses and have them smother me too! I think seeing all their little faces will help my spirits.
Sunday, we will be celebrating DeLainey's 9th birthday even though her true birthday is Monday. It is hard to believe I've been a mama for 9 years! We have a big surprise up our sleeves for this birthday and I can't wait to see her face!
Monday, Brandon and I will be waking up bright and early to beat DC traffic on our way to Wilmington. We have two appointments there and hopefully will be able to return home that afternoon. If we end up going the NG tube route, Xander will have to stay for observation to make sure he can tolerate it. My aunt will be here with the other three children.
While I expressed frustration and annoyance with going the NG route in my last post, I don't want to be misunderstood. I want Xander better and I'm willing to do whatever it takes. Part of me just feels like this will be a band aid and no one will look any deeper. I've lost a lot of trust for the medical community and I'm just a little gunshy. I had a little chat with a medical professional friend and she gently reminded me that NG tubes aren't the end of the world and that they are temporary. She said that this could possibly relieve some of our daily worry about his intake. I get that. But as his mama, I also want a long term solution. I'm willing to do whatever it takes to see that my children reach their full potential.
I love each of them and I tell them several times a day. I love them, always, forever and no matter what.