Readmission

Thursday, September 3rd

We all got to enjoy being home together for a day and a half before landing back in the hospital. Avery didn't feel great at home, but she was able to enjoy her own bed and play with her sisters in small spurts. Wednesday night we had to begin giving her Neupogen injections again. None of us enjoyed it, but she quickly got over it and went to bed. I gave her the sodium supplements, and within 10-15 minutes she woke up feeling sick. She vomited it all up along with her NG tube. She quickly went back to sleep, and we planned on having to go into clinic Thursday to get it replaced.

When I woke this morning, Avery felt warm. I took her temp under her arm, and it was 100.2. Knowing that she was about to spike, I grabbed a quick shower and packed our bags. I checked again 30 minutes later, and it was 102.7. I called the oncology nurse, and let them know we were on our way to the ER.

She was such a big girl in the ER and did great getting her port accessed until they actually stuck the needle in. She cried out in pain like she never has before. They started her on antibiotics and maintenance fluids immediately. Neurosurgey came by, and they decided to tap her shunt to check for infection. It was very unlikely to be infected so soon but they checked anyway. This entailed me holding Avery's head and flailing body still while they stuck a needle in her already sore head and pull back some CSF. I'm not going to lie, I had to close my eyes while he inserted the needle. Then, we headed to CT for another head scan. She did a great job being brave and being still for the CT.

Then, we waited(over 6 hours total , but who's counting). They were waiting on her labs to come back to determine if she needed to go to Special Care or the Oncology/Hematology floor. She was able to nap some though. She woke up and needed to go to the restroom, so I helped her get up to go. She walked all the way there and was waiting on me to get the specimen cup ready when all of the sudden, she slumped over and went limp(and then rigid in my arms). By the time I got her back to her bed(with some help), she came to and was mad at me for not letting her go pee. It was so scary especially given her episode last week. Her blood pressure was a little low and her heart rate high(from the fever) so they gave her an additional bolus of fluids. She still refused to take Tylenol for her fever.

We finally got to our room on Oncology floor(thank goodness) around 3:30. First, they had to change her port dressing, because the dressing from the ER was not occlusive. Then they had to do a COVID test and reinsert her NG tube. At this point, she was absolutely done for the day with everyone and everything!

This evening, she finally perked up enough to play the iPad and open some surprises even with a 102.9 temperature. We were finally able to get her some Tylenol and are about to push her nightly sodium.

We are praying for a restful night! Her ANC was basically zero, so we will likely be here until her counts start to recover.

Please continue to pray for:

- Rest

- No infections

- No vomiting

- No pain