11/19/2022
Day +46
Hi everyone!
We got great news on Tuesday but then P spiked a fever and we ended up.back in the hospital. I had planned to write a post that day to update everyone on the BIG news but things got a little side tracked. We were putting the girls to bed Tuesday night and Pais felt a little warm. For her, if her temp is 37.5 for an hour it's a fever. So if we take it and it's 37.5 we are supposed to check again in an hour and if it's gone down then no fever, stays the same or goes up then it's a fever. Or if it's 37.7 or above, it's an automatic fever and we have to call in. So I took it under her armpit on Tuesday and it was 37.5(crap). I checked the other arm it was 37.7(sh*t). I decided to go back to the other arm 5 minutes later and it was 37.9(f**k). I went out and told rich and grabbed the second thermometer because I really didn't want to believe it. That thermometer was all consistent too. So we told Pais we had to go into the hospital because she had a fever, to which we got an "awww man". We packed up her stuffies and everything we needed and we were getting her coat and boots on and she said I wanna give Kenny a hug goodbye. Kenny who was still awake at this point because of all the commotion came running to her and they hugged for a good 10 seconds. Pais said I'll miss you so much Kenny and my heart melted. Rich took P to the hospital and Ken turned into a wreck after that. She loves her sister so much and I am so happy with the bond they share.
So when she gets a fever they have to take blood cultures from all of her lines. So she has two lines on her PICC and 1 line from her port. So we put a numbing patch on before they left. Because it was after hours we have to go through emerge but they put us directly in a room so that she isn't exposed to anything in the waiting room. They took blood cultures, did a covid swab and left her alone. It was late by the time we got up to the 8th floor to the BMT unit. They were doing vitals and checking her temp every hour. No one got any sleep that night.
When they do blood cultures they wait 48 hours (can be up to 5 days) to see if anything grows in the sample. Paisleys started growing in less than 48. Regardless with a fever they start them on a broad spectrum antibiotic right away. Once it started growing they had an idea of what the bacteria may be and that it was growing in the culture taken from her port line. They then started her on a second antibiotic based on the bacteria. When things grow that fast and are isolated to one line it can mean a few things.
1. It was a contaminant, this bacteria lives on our skin and could have contaminated the sample when it was taken.
2. The bacteria has infiltrated her port itself and the infection is in that line.
Because she is having low grade fevers they have to assume it's a real infection and she will receive 7-10 days of iv antibiotics here in hospital. The good news is the bacteria is sensitive to the original antibiotic she was put on, so they have discontinued the second one. The other good news is that her subsequent cultures have all been negative. She hasn't had a fever since midnight last night so hopefully it stays that way 🤞. If it doesn't and all her cultures are negative and given that her "multiswab" all came back negative. We would have to run more tests to figure out what the fevers are from. They turned her covid nasal swab into a multiswab which tests for RSV, rhinovirus, influenza and a few other illnesses. So it wasn't necessary to put her through a second one.
So we will be here until atleast Tuesday, possibly longer if her fevers continue. As always, we live day to day. My wonderful mother Kim Roberts came to Toronto yesterday and took Kennedi back with her until next week for a change of scenery and allowing us to both be here with Paisley.
Now that I've kept you in suspense for this whole post about the BIG news we got.
Paisley's chimerism report came back. It measures the amount of cells that are hers and the amount of cells that are her donors. Hers came back at greater than 99% which is classified as perfect because of margin of lab error. This means that 100% of her cells are her donors cells. This is huge! The news we want to hear. We always say that they injected her with Ken's Monkey Business. So Ken's monkey business took over her body.
They will continue to test her chimerism at different intervals to ensure it stays that way but they assure us things are perfect. We had been waiting on this news for almost 2 weeks. One of the final pieces of the puzzle. Her counts are doing great and the team is happy with where she is (besides the fevers lol).
Hoping we get out at the 7 day mark and can get back to the apartment and back to freedom. Well, what little bit of freedom we have while doing everything possible to keep Pais safe.
