Big Day

Today I was able to listen in on rounds and ask my questions about the 2nd MRI. The PICU doctor is awesome and a great communicator. She really listened to my concerns. She explained the MRI results to mean that it is naturally evolving as it should and the reduction I was concerned about was a color change not a size reduction. I felt good after talking to her. She said she would send ophthalmology to evaluate Kaylee's eyes as we noticed some reading deficits where she missed the first letter 4x in a row while waiting for her MRI. She also complained about blurred vision and no peripheral vision at one point. Thankfully they came and assessed her and found no deficits. Praise God!

They also worked on decreasing the IV fluids so she can get her appetite back and be thirsty. They will also try to switch her IV meds to oral meds.

Physical Therapy and Occupational Therapy came to evaluate Kaylee since she has been on bed rest since discovering the hemorrhage on Sunday. OT came in first and raised the head of the bed to 20 degrees, which she protested. They played a game of UNO with her to get her arms and eyes moving. They noticed that she has difficulty scanning up and to the left. They pooped her out and five minutes later in walked PT.

Kayla, the PT was awesome. She recognized that Kaylee did not want to move anymore because she was nauseous and her head hurt, so instead of making her get up she wrote down some goals. It was around 10:30 am when she came, so she wanted Kaylee to try to elevate the head of her bed 15 degrees every hour until she got to 60 degrees, which should be by 2:00 pm. 

Kaylee was given Tylenol for her head and zofran for the nausea. It took awhile for them to work, so going from 20-40 degrees was super slow, but once they kicked in she was able to get to 60 degrees just as Kayla was returning. Kaylee reluctantly sat on the edge of the bed with her, then stood up, then walked down the hallway, then went to the bathroom for the first time. She then sat up in a chair and watched "Hunger Games". She ended up sitting for 2-2.5 hours before her head started to hurt again. Unfortunately, she needed to have her first bowel movement at the same time, which didn't help her headache any...

By the time she got back to bed, she was pooped and had a pretty bad headache. Around this time we got orders to transfer off PICU to the 10th floor on pediatrics. She went via wheelchair and was miserable. She complained of 6/10 pain in her eyes, which was new causing us to page neurosurgery, who quickly came to assess her.

This was one of my personal low points. I had been on such a high from seeing Kaylee walk again, enjoy a movie, and joke around that when she crashed due to the pain, I was devastated. I had hoped we were improving and then she regressed...