Friday was the last day of tests for this trip. And it began in the ER again.
When we had the tube reinserted on Wednesday night, my Dad and I noticed that they didn’t measure it – they just did it. We thought that maybe Hershey just did it differently and didn’t question it.
Thursday afternoon, Tori started to be very angry during feeds and sounded very uncomfortable. She then started vomiting a little bit during the feeds – not milk, but this yellow liquid. She also had not gone #2 since before the MRI. We thought it might just be from the anesthesia, so we let her do a few more feeds to be sure, after I consulted a nurse friend.
By Friday morning, she was still crying as if she were in pain during feeds and she was still vomiting a little. So, we left early for the hospital to try to ensure that she would still make her appointments.
Yeah, that didn’t happen. We missed the first one entirely, and were 45 minutes late for the second. There is no such thing as a quick ER visit.
They took her to have an X-ray of her stomach to see where the tube was, and while we waited for the results they took her vitals. When they went to take her temperature rectally, she got SO mad and ended up solving one of the problems! Haha. We were laughing SO hard because so much came out! I know this is TMI…😉 but with babies, you have to watch things like this.
The X-ray showed that the tube was coiled in her stomach, meaning that it was far too long. Amazing how, in just two weeks, Brennan and I have become so knowledgeable about NG tubes. This explained the yellow liquid somehow, but I can’t remember.
So, lucky Tori got to have another tube replacement! Poor baby. They did a second X-ray to confirm placement and we were free to go. She has been fine ever since.
After over 3 hours in the ER, we ran upstairs to her first opthamology appointment where they tested her Visual Evoked Potentials (VEPs).
She was so tired that I had to work to keep her awake!
Then, her final appointment of the day was another opthamology one. They dilated her eyes and looked at the anatomy.
We will know the results at some point next week.
We then headed back to the hotel where some friends came to see us and brought me Chipotle for dinner! We had a wonderful visit and we spent time in prayer for Tori.
We got up early this morning to catch our train. We are being followed by a huge snow storm so we are very thankful to be in a train, again.
We were amazed to find out yesterday that country star Rodney Atkins had tweeted about Tori! A friend of ours grew up with him and he shared Tori’s story with Rodney. We hope this will help raise awareness of Krabbe and help the fight for newborn screening across the nation.
We will soon be reunited with Brennan and we can’t wait!
Next week, Tori will see a geneticist, a G.I. doctor, possibly Early Intervention, and I think that is it. I also have a podiatrist appointment. It will be another busy week, but we will at least be home.
We will return to Pittsburgh in late May for an evaluation and follow up testing. Brennan will be able to make the trip with us this time, thankfully! Please pray that her brain will be healed by the time we go back – what a testament to God’s power that would be to even more medical professionals!
Even So, Joy 
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