October 5, 2016

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Maintenance Day 544: Scared

The past 24 hours have brought more challenges to our sweet Scarlett. Late Tuesday afternoon, she spiked a fever of 102. With that, came a return of her diarrhea. Throughout the night, her fever went up to 104, her heart rate was in the 180s, and she was in the bathroom every 2 hours. Sometimes it seems like she doesn’t even know that she is going. It got so bad that the nurses requested that she start wearing Pull-Ups. Scarlett was not having it. She fought Brock and cried so hard she almost threw up. After he explained the reason, she seemed to understand. Then she thought she didn’t have to get up to go anymore. So neither Brock nor Scarlett got much sleep last night.

Wednesday continued in the same vein. The fever has not gone away (although at her 5:00 vitals it was down to 100.2 but 6:00 was back up to 102.6). Her heart rate finally is down into the 150s. Her BP is stable. Both the nurse practitioner and doctor saw Scarlett today. They are very concerned with her condition. Scarlett was started on two more antibiotics today. Hopefully those will cover any bacterial infection she may have. Evangeline had a fever last week so Scarlett may have caught that and it’s hitting her so much harder. Her ANC was down today. Hopefully tomorrow it will be higher. She can’t fight anything without that.

Scarlett didn’t have enough energy to do physical therapy or Child Life. She slept a lot today. She hasn’t eaten much today. I’m thankful that she has the TPN.

Her doctors are very concerned. They encouraged Brock to come home today. Tate and Evangeline need us tonight. Tate cried this morning because he misses Scarlett. He has met with the school guidance counselor to talk about how he feels when she is in the hospital. Evangeline told me this morning that nobody loves her. They only love Scarlett. All of this makes us feel completely torn in two. We need to be with all of our kids. They are desperate for normalcy. So are we.

I was able to get stool samples from both of our pets today and deliver them to a local vet. We hope to hear an answer by Friday. Just knowing would be nice. Yesterday, I spent almost an hour on the phone with the health department. They wanted to know every place we have visited, eaten, swam…since July 28. Not only every restaurant we have eaten at but the exact date, time and what Scarlett ate. Every garden she has eaten from. Whether we use manure. What she ate from it. What pools she swam in. What freshwater lakes, river, streams she has been to. Have we flown anywhere? How are our pets? Do they eat raw meat? Has Scarlett played in a field? Been to a farm? A petting zoo? This went on and on and on. I can barely remember yesterday let alone nine weeks ago. If our pets test negative, our next guess is that she went tubing in the river. But it’s too late to test that. We may never know the source.

Scarlett’s vitals were scary today. Her new infection is scary. Her lack of ANC is scary. Any one of these alone are enough to be scary. All of them together is terrifying. I’m not sure that I will sleep tonight knowing that neither Brock nor I are with her. My mom will be staying there and I know that she would never let anything happen to her but it’s just not me. The fact that her doctor told Brock that he is concerned has us scared. We are desperate for an improvement. This is the most afraid I have ever been.

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