Thursday, March 26, 2015

Morphine stopped and Necrotizing Fasciitis appeared

After a few days of giving Molly the morphine, she was still getting doses a few times a day. It was managing her pain too well and the doctors wanted to see how she would do switching the morphine with oxycodone. They did that switch on Thursday March 19, 2015. They also gave her the peg-aspargase chemo. She was doing pretty well on Friday while I was there, and overnight as well. She was still a bit cranky as she was on the steroid pulse again for the week, and still NPO (nil per os, Latin for “nothing by mouth”) though she was talking about food quite a lot. Fries and fry sauce (two cups so she can share with me), healthy pizza, healthy ice cream, healthy milk, applesauce with the green twisty lid... yeah food is the only thing she wants to talk about. And the movie she’s watching over and over again for this hospital stay is Ratatouille. 

On Saturday morning Grandpa Wayne came to stay with Molly while Daddy went to be with Big Sis at her tumbling competition. I was back at home helping to run a fundraiser yardsale for Molly. We called it “Molly’s BIG Yardsale” and advertised it pretty well, and ended up getting a very good turnout! I overheard people talking on their phones about “Molly’s BIG Yardsale” like it was a legitimate event. We had a lot of item donations from the community, and a lot of money donations as well. It made me cry a few times that day. There was also a yardsale going on in Phoenix, which was even more successful than the one here! Big thanks to everyone who donated and helped, and especially to Aunt Ashlyn for coming up with the idea and running with it!

While Daddy was at the tumbling meet, Molly noticed some “bumps” on her bottom when she used the toilet and the nurse looked it over and drew some lines around the rash she saw there on Molly’s left butt cheek and in towards her anus. After a little while, the rash had spread past the lines up toward the front and a little on the right butt cheek and the nurse called in the infectious diseases team and the surgical team to check it out. Molly didn’t want them looking at the rash out on the bed but let them look at it in the privacy of the bathroom (what a mature little girl!). Daddy had come back from the meet by then and they told him that this rash is a necrotizing fasciitis (flesh-eating infection) and they need to perform a biopsy to find out if it’s a bacterial or fungal infection. The rash was painful and Molly couldn’t walk or even sit up without needing Daddy to support her.

After the biopsy, Daddy called me and told me that they confirmed the rash is a bacterial infection caused by the bacteria Pseudomonas, and gave us a couple options for what we could do at this point. They said they could take her in to surgery right away, perform a debridement (removal) of the infected tissue, and cover the wound with a wound VAC until her immune system is back at which point they will do a skin graft to cover the area. They said this option presents many serious risks as her immune system is nonexistent and if there were any complications she would almost surely die. The second option was to wake her up from the biopsy sedation, make her very comfortable with morphine, and let us have some time with her until the bacteria took her life, which they said would happen later that night. 

I almost died when I heard the second option. I couldn’t believe that my baby could die that night. I told Daddy that obviously we have to do the surgery. We can’t not try to save her. He agreed with me, saying if we didn’t try, then we’d hate ourselves for the rest of our lives. So he told the surgeons to start the surgery, and I packed Big Sis and Little Brother up to drive down to the hospital. While I was getting the bags ready, I got a text from Daddy saying they were finished with the surgery and I should go down there now. I got really scared at that message, because it didn’t seem like the surgery took long enough, and that must mean there was nothing they could do about the infection. 

To be

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