I have been wanting to post an update on Emerson because I know a lot of people have reached out asking how she's doing. I just haven't known what to write because we think we figure it out are making progress and then as soon as I say that it's like taking two steps back and what we thought was working wasn't. So I just decided to wait a while until I knew more.♥️

The ER doctor that told me her left ventricle was completely collapsed was not entirely true. It is very different from how it was 5 months ago and there's not much fluid in there but she doesn't have any signs of fast overdrainage with little blood clots you can get from the tears when it shrinks down that fast. So they aren't very concerned about that and they wanted us to check other things. Since we had Imaging done here they pushed out our next appointment to the beginning of March and they will do a full MRI with sedation instead of just the rapid mri. Neurology wants that as well. They saw some calcification on her brain tissue which can happen from damage to the brain or infections which she has had both. So her neurosurgeon was not surprised to see that. But either way it will give us a better idea of what's going on.

They also did an x-ray of her abdomen as part of the shunt series because the tubing for her shunt goes down into her belly and that's where it drains. But they were able to see she was completely blocked up in her intestines and bowels. There was so much it was like little baseballs. So when you're that blocked up nothing can move through your stomach which would explain her vomiting.

They also did a viral panel as part of the precaution that neurosurgery suggested and she did come back positive for the original coronavirus from years ago. They call it the "OG coronavirus" and say its like the common cold now. It's strange though because she has no symptoms and never has of being sick. But apparently viruses can slow down your gut and I think that's what happened.

They did a bowel cleanse on Thursday night with a constant drip of Golightly through a feeding tube into her stomach. Let me tell you it was messy!💩 Even after the cleanse this weekend she continued to throw up. We did an upper GI study on Monday morning where she drank barium and they watched it to see if there any abnormalities with her stomach or narrowing of the tubes that leave the stomach. That all came back normal. They think everything just slowed down from being backed up and the virus, so we have to get it working again.

The GI team put her on erythromycin on Monday. It's an antibiotic but they found that it actually works to make the stomach contract and help push things through. It can also cause cramping in these little kids. They could also see that her reflux was pretty bad on the GI study so they put her on pantropazole here in the hospital to help cut down on the stomach acid. The stuff she was on at home for reflux just isn't enough. Yesterday and today the poor girl screams and cries so hard before she toots. You can tell she's in pain but it is helping push things through. She still threw up yesterday but it was less than the day before which is progress.

We've been here 7 days now and I have not been home yet. So they added us to the laundry service and they just brought me back my bag of clean clothes for her and I. 😁

I was really hoping she'd be home by Thursday night because I am having an endoscopy done on Friday with sedation so I won't be able to be up here. But it's not looking like that will be the case because I don't think she'll be taking enough volume of her food at home yet.😔 And they have her on an IV drip with electrolytes and fluids here to keep her hydrated until she can drink more.

As you can see from the pics, she's a mixed bag of emotions depending on the gas pains.

** and thank you to Leah Bonine for coming down last minute to help with Avery since Tyler had to be in Wichita this week.🤗