Monday, November 26, 2012

Visit from Grandma!

Today the pain was still there, and her fever was still coming and going. Without the pain medicine, Vivi was pretty miserable when she wasn't sleeping. Grandma came to visit after she dropped Owen off at preschool. Vivi was really happy to see her.

After Grandma left around 3:30, I had the nurse come in to take Vivi's temperature since she felt warm to me and was pretty fussy. Sure enough, her temp had gone back up and it was the highest it had been since we were re-admitted - 103. The Infectious Disease doctor on staff came in to see her since he had been brought in on her case. He said we'd give it one more day and then he'd start looking outside the initial diagnosis of pneumonia.

I was not happy. I was scared to wait another day when it was day 10 of her fever. I called Molly for her opinion, then Brett, then Vivian's pediatrician. I was starting to worry it could be something more serious than just pneumonia, especially since all of her chest x-rays showed a minimal pneumonia in her lungs.

Vivi's pediatrician had the paperwork from the hospital and from our doctor's notes, she agreed with her that they should probably treat her for Kawasaki disease, especially since the fever had been lingering so long and at that point Viv was on 3 different antibiotics. Our doctor at the hospital came in and talked with us and said they were going to go ahead with the IVIG treatment for Kawasaki since Vivian had most of the symptoms (albeit not classic symptoms, but similar enough that it warranted moving forward with IVIG to protect her heart). I was in the middle of driving back to the hospital from showering and gathering clothes at home when Dr. S called me saying she was in the room discussing the procedure with Ben. I joined in on the conversation until I was actually in the room too, and Dr S stayed to answer all of our questions before they started.

I was pretty nervous about the whole thing because it is an inflammatory process so to protect her hear from an aneurism, they have to give her a big (for a child) dose of aspirin before, during, and after the procedure. Then, they start it very slowly so that if there is an allergic reaction, they can immediately stop and treat the allergy. Poor baby had to get a new IV put in and on top of that, her original IV from when she was readmitted had to be taken out and placed in another spot because it had started leaking a tiny bit. She was a trooper through it all. At the end she said "All done!" and got to pick a prize out from the toy box.

 They started the IVIG at 9:20pm and I stayed awake until 11pm because I was worried about how she would handle it. Of course, she slept through the entire thing. Even when I had to wake her up at 9pm to give her the first aspirin dose (they let the parents do the medicine by mouth since the kids take it better that way) she went right back to sleep within 30 seconds. The nurses were checking her vitals every 15 minutes in the beginning, then as she was showing signs of handling the treatment well, their vital checks moved further apart.

At 11pm, I decided to head down the hall to the "parent sleep room" to try to get some good rest while Ben was staying overnight. I gave him instructions to please wake up at 4am when the nurse comes in to give the aspirin so that he could give it. But unfortunately, he wasn't able to wake up. I woke up at 4:15am to sounds of Vivi screaming from down the hall. Yes, the door to my room was closed; hers, not so much. She was so sleepy though that she went back to sleep by 4:30, and so did Ben and I.

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