All weekend her temperature has varied significantly. Anywhere from 100.4 to 96.5. It flies up and drops just as quickly. That may explain the sweating. I checked her blood sugar during one of the sweaty, pale episodes and it was 84, so that's not it. Because she's on TPN now, we have a nurse that checks in once a week. She saw her Friday night when we got home. Abby's heart rate was in the 40s, and she asked me if she had end of life care. Ouch.
It hurts just to say it. I did not sleep well that night. Neither did Abby, so at least I was reassured that she was alright. Sunday was her best day. Her color was definitely better. Today was harder.
The last few days when I flushed her Broviac, I thought I felt it leaking, but I couldn't see anything wrong with it, so I chalked it up to maybe not having the syringe screwed on tight enough. Last night, I flushed and obvious water came out of the side of the catheter. The TPN ran without leaking, so I left it alone.
The nurse came back this morning to draw labs. I could clearly see blood where the hole in the catheter was. We wrapped it in tegaderm, but tomorrow I need to take her to the ER to fix it and draw blood cultures. I probably should have gone today, but we decided if it was well covered she could wait.
Emily also had the worst seizure day she's had in months on Sunday. Poor girl. She sees Neuro Wednesday.
On a less depressing note, we had a family BBQ today. It was lots of fun and the distraction I needed. I made these cute things:
We made lots of other goodies, but those cupcakes ROCKED!
Obviously, a lot going on around here. I can't say that I'm looking forward to next week, but each day is an opportunity for something good to happen, so I won't wish it away :)
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