Tuesday, February 18, 2014

FEVER :(

2-18-14 FEVER... The dreaded word. The word nobody wants to hear... Jay went back to work. I was hoping I could hold the fort down. My mom and Jay's mom came over to help where they could. Lilly wasn't feeling well. I could tell something was off. It's that 'mom instinct'. I took her temperature. 100.7 I called the clinic. They said to watch her for an hour and call us back. It kept fluctuating but stayed right around 100. Up and down, up and down. I was getting nervous. I tried calling the clinic back, but I kept getting the run around. I was getting frustrated. They finally called me back and decided since Lilly was so new into the "induction phase" of her chemotherapy, that she needed to come in. But, since it was so late in the day she had to go through the Emergency Room instead of come up to clinic. I was upset because if they would have called me back when they were supposed to, I could have gone to the clinic. Oh well. It's over. I can't dwell on it. When you have a child that has a compromised immune system and you have to go through the ER, you call ahead and pre-register so they don't have to stay in that awful waiting area with all the other sick kiddos. Jay's mom took me and Lilly up to Primary's. My mom stayed with Emery. Lilly was scared. I was scared. We called Jay and he left work to meet us there. They accessed Lilly's port for the first time which was a hard thing for her. But, she's a trooper. She did great. They immediately started her on an antibiotic - no questions asked. They don't even wait for any tests to come back. When leukemia patients have a fever you try and get antibiotics in them within the first hour they are at the hospital. Then, they gave a second antibiotic. And a third. And then we were told a room would be ready for us soon up on the fourth floor. Wait.... What? I didn't know we were being admitted!! Lilly was upset to have to stay in the hospital again. So were we. But, our cute friend Michalla found out we were back in the hospital (from facebook) and drew a picture and wrote a letter for Miss Lilly. She had a nurse run it down to us. That was so so sweet of her. It made Lilly happy, if only for a small moment. 




Lilly was quarantined to her room, but Michalla came and drew on her door! She knows how to write and draw backwards so Lilly could read it on the other side. This made Lilly smile! She thought this was so much fun!!


Michalla and Lilly took turns drawing this picture together. I love it! Please keep Michalla in your prayers too. She has a long road ahead of her too. She is one of our angels and we care about her so so much!!


2-20-14 Since we were already in the hospital for a few days, Lilly's doctors decided to move up our chemo day and spinal tap so we wouldn't have to turn around and come back. That was nice of them. I was nervous for Lilly to have her spinal tap. It was hard on her the first time, but I think it was from her bone marrow biopsy that was hard. This time, we go to the RTU (Rapid Treatment Unit) instead of the operating room. She's not intubated, (no tube down her throat) but there is still an anesthesiologist with her the whole time while she's sleeping. We were able to go into the exam room with her while they put her to sleep. Lilly and I sat on the bed. I held her tight. They gave her some medicine and she immediately went limp. That was a little scary. They sent us out of the room and came and got us when she was in recovery. During the spinal tap, they check her fluid and also give her chemotherapy in her spinal fluid. She did amazing. She was super hungry when she woke up. She ate a bag of cheetos, a bag of chips, and a slushee. Those steroids finally started to kick in and she's eating like a teenage boy. It's crazy to see because she normally eats like a bird. But, it's only for a couple weeks and then she's off the steroids. We got released to go HOME! It's so nice to be home. But, we had to go home with IV antibiotics. I didn't know when you become a parent with a child that has cancer, you also become a nurse too. Scary! Good thing we have Gordon around. Jay's brother-in-law is a Life Flight Nurse and he has helped us so much. Stressful... So stressful.



Our Social Worker Kristen brought by some hats for us to try on when she heard we were back in the hospital. We decided we liked this one the best. Isn't she beautiful?


Heading down to the RTU for her spinal tap and chemo. Mom gets to ride in the wheelchair with Lilly. It makes it a tiny bit easier for her.


Child Life Specialist Hilary is with us keeping us preoccupied while we wait to talk to the anesthesiologist.


I had to stay preoccupied while Lilly was asleep having her procedure done. Sara Bear had a rip in her leg so that kept me busy. I needed it. I was an emotional mess!


Right after Lilly woke up she was so HAPPY! And she was so HUNGRY! She ate a bag of cheetos, a bag of chips, and a slushee! I love this girl so much!!!!!

2 comments:

  1. Tiffany so glad that you kept calling the clinic until they called you back. It was so hard taking her back for you but so grateful that you did so that she could get the help she needed. You are a great mom.

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  2. It's good to see Lilly happy and smiling even through all that she is going through. Love you Lilly!

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