We saw the pulmonologist on Friday afternoon and they noticed that she had a fever of 102. That is the first time Tori has ever had a fever.
They gave her Tylenol around 3pm and it kept the temperature down until 6:30am on Saturday, when it was back to 102. We gave her Tylenol again and checked her temperature every two hours and it was normal until 6:00pm.
She didn’t have a wet diaper all day which concerned us. We spoke with Dr. Escolar’s nurse practitioner and she gave us suggestions of what to try.
We waited the appointed length of time, and when she still hadn’t peed we knew it was time to head to the Emergency Room.
The triage nurse was concerned by how few breaths she was taking per minute and that got us into a room very quickly.
When we walked in, we were immediately surrounded by four nurses and a doctor. Brennan and I were concerned because of their urgency.
They drew blood, put her on a small amount of oxygen as a precaution, and made her mad by messing with her 😉 They put an IV in to get some fluids into her body as well.
They came in and did a chest x-ray in the room and it came back clear. No pneumonia. That was our biggest fear.
Grandma Amy came to visit and be there with us…
They put a catheter in to draw urine to test and that was apparently the trick! After they pulled the catheter out a waterfall of pee appeared! She decided to poop again as well. The whole room was cracking up! It was all over the table!
Tori slept while we waited and visited with Grandma Amy. They had us give her 4 ounces of Pedialyte through her g-tube to see how she would tolerate it while we waited for the results from the urine test.
All the labs came back clear; however, the last temperature they took was low – 95.3 – so they consulted with another doctor about it.
They said that it is likely that the Krabbe is progressing since there is no other medical explanation they can find. Not good news but not unexpected.
They are waiting for the respiratory lab results to come in but said we can go home and wait.
We were there a total of four hours and were back at Milton Hershey School by 2:00am.
Thank you all for praying! Now we just have to monitor her body temperature and keep her warm.