We got home from the hospital on Saturday (3/9) with the expectation that we would not be back for a few weeks when she starts a new chemo set she hasn't had before. On Tuesday (3/12) Rebekah got herself out of bed and walked / stumbled (some of the drugs she is on make he look like a tiny drunk) to the couch in the living room. I helped her get up and felt like she was warm so I took her temp and she was 101.6 I couldn't believe it so I checked her other ear, same result, shaking my head I went and got the old thermometer it read 38.8 c. I didn't need to convert it to know it was in the range they told me I had to call about. I found her discharge papers still packed in one of the bags from the hospital, and called the number for the Hem-Onc clinic at primaries and called they very patiently told me to put the Emla cream on her port, cover it with the special dressing or plastic wrap and head into the clinic making sure to put her mask on before she comes into the hospital. I am seriously freaked out because so many things I have read online say that she needs to have antibiotics within 2 hours of spiking a fever or she could die. I pack her into the car as quickly as I can, text my husband that we are heading up to the clinic start heading out. I had almost no gas in the van so we had to stop and get gas so we could make the 60 miles up to the clinic, I vow to myself that I will never let my van get below half full ever again.
We arrive safely at the hospital Rebekah is wearing nothing but a white tee shirt, a pink blanket and her mask, I park the van and carry her into the hospital half running, the security team at the front desk don't bother to ask where we are heading and the people waiting at the elevators let us take the fist one that comes by ourselves. I get up to the clinic and head in the wrong door but the moms that see me let the nurses know I need help. They direct me to the front desk. I tell them her name and they direct us into a room and ask if her port is ready to access. they take her temp, access her port draw for the standard set of labs and start her on a bag of fluid and their standard big coverage antibiotic. I feel less scared because it's only been and hour since we left our house, these guys don't mess around with fevers in cancer patients. Shortly after they brought in a urine sample cup and filled it from her catheter. About 30 mins after we got there a doctor came in to see us and talk to us about what she thought might have caused the fever. She also had some of the labs back and said that her ANC (a magic number that has to do with the big gun white blood cells) was up from Saturday a very good sign, and that she was wasn't dehydrated and her liver and kidney functions were good. And the test that they do for bacteria in the blood wasn't back yet but some of the indicator tests looked like it wouldn't be that. She told me that she thought it was the catheter that was the problem and that it would take at least overnight to figure out what should be done about it.
I texted Shawn and asked him to be the one to stay that first night with her, I know he has hated being away from her when important things are happening and I was exhausted. they get us settled back in ICS (it's just down the hall) and we start the waiting. Nothing of note happens that night that I am aware of Shawn says it was a long night when I get there that next morning after dropping the boys off to school. He leaves for work and shortly after that I get called out to rounds with the doctors. they talk about the bacteria that came back in her urine it was only one type (that is kind of a rare thing usually it's a whole mix so they want to wait and see what it is then start her on an antibiotic that is more specific for it. They also want to see if the tumor has shifted or shrunk any so they can remove the catheter so they schedule an ultrasound. A few hours later we head down to ultrasound and they look at the tumor next to the old ultrasound it's the same size and in the same place causing the same amount of bladder displacement but it has more necrosis in it. Happy dance the tumor is dieing, the nurse, Kathy, does a little raise the roof thing to celebrate with me, but the radiologist says he doesn't think that the catheter will be able to come out :( . We head back to the room to wait. The next day a doctor comes to tell us that the bacteria causing her infection in called klebsiella and it likes to stick to plastic so he wants to take out the catheter while we treat the infection and cath her intermittently for a day or so to beat it down with IV antibiotics then put the foley back in and send her home with oral antibiotics oh and he says Rebekah is very underweight and he wants to put a feeding tube down her nose and he would like that done tonight (3/14). I tell him that I would not like to come home with 2 tubes in my daughter and he tells me he thinks it's very unlikely she will be able to pee well enough on her own to keep her kidney function good enough to deal with the chemo. So the foley comes out and the NG tube goes in shortly after that. Rebekah didn't handle the NG tube well but was very glad not to have the catheter. She threw up the tube at about 8pm and just after the nurse pulled it out of her nose she said "We should have asked Heavenly Father to help me not puke up my tube." she said it softly and I didn't hear her so I asked her to repeat herself and so she said it again. (The things we need babes to teach us.) The nurse left the room to get a new tube to place it again. Rebekah and I prayed together that she would be able to pee, that she would not need to have the catheter again and that she wouldn't gag up her tube again. The nurse came in and replaced the NG tube.
Rebekah didn't gag anymore and the next morning (3/15) I found out that her out put (pee) was 1000cc and her input (from the NG and IV) was 900cc. Kathy did a little raise the roof with me. {side note: the nurses on that floor can request a patient if they want to.} I didn't get called out when they did rounds that morning but 2 doctors came in after and told me how shocked they were that she was able to pee at all last night, and that she would not be going home that day because she had a fever during the night. (Yes, I sleep that soundly at the hospital; the nurse came and did vitals and changed diapers several times and didn't wake me.) So one more night and she would be home. I called Shawn and told him of the pee and other news and asked if he would take that night he did, and brought her home to me on Saturday with no catheter :D.
This tells me God hears and answers the prayers of children and mothers and that he loves my little girl. This whole event was a mixed blessing.
Tonight (3/17) Rebekah is feeling more like herself, laughing and getting her big brother Joe in trouble. Most of her hair has fallen out and Joe was telling her that it could come back a different color she was a bit freaked out about that and I let her know that if did and she didn't like it I would let Aunt Summer dye it any color that she wanted. She calmed down and asked for the night feed to start through her tubey.
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