Hello again CHOC Children's Hospital

Sinatra at the ER early Saturday morning. 

Well we thought we could get through Sinatra having no immunity without a stay at the hospital, but we were wrong.  It was a week since Sinatra's last dose of chemotherapy and we were doing ok but on Friday night Sinatra started looking uncomfortable.  When we put Sinatra to bed she slept maybe 3 hours before she started whining and rustling around. We checked on her and she seemed ok. From that point forward she was up crying every hour and started coughing. We called the hospital at 11:00 pm to see what they suggested and they said as long as she doesn't have a fever and isn't vomiting we should be ok.  At 1:00 am we took her temperature again and it read 99 degrees.  For the next 4 hours Sinatra was awake and clearly uncomfortable. At 5:00 am when we took her fever it registered a 101.6 which means get back to the hospital.  We called the Dr and she said she will get a room ready and to get to the ER ASAP.  

We got to the ER and they started giving Sinatra antibiotics and fluids right away.  By 9:00 am we were up in our room.  Sinatra s temperature spiked at 103.9 that morning but it finally got under control (although wasn't completely gone until Monday) in a few hours.   Sinatra wasn't eating or drinking and just wanted to lay in bed. Little did we know she wouldn't leave that bed until late afternoon Tuesday.

This may have been the hardest few days of our journey so far.  Not only did we find out that Sinatra had a 0 ANC and white blood cells less than 100 but she also started to show severe pain.  From Saturday morning until Tuesday Sinatra was in enough pain that she literally would cry if she wasn't laying flat. We couldn't get her to sit up in bed let alone stand up or walk.  Sinatra would cry in agony when we would change her diapers. This was a painful few days for our poor girl.

During this time the Dr's confirmed that Sinatra had no infection or virus which was good news but they were still worried about the pain.  Over the next two days Sinatra was on three antibiotics, pain medicine, anti-nausea and stool softener.  During these three days they also had done an X-ray, cat-scan and ultrasound to ensure there was no organ failure or other major issues.  The Dr's couldn't find anything.

On Tuesday after some pain medicine Sinatra was able to sit up in bed. We were able to then put her in a chair and even walk for a bit until the pain medicine wore off, but this was a huge step and relief. Over the next few days she was sitting up more (with less visible discomfort) and was walking around the hospital.

We ended up staying a loooooonnnggggg full week at the hospital. These nights are often hard to get any sleep whatsoever. The nurses have to come in every 2 or 4 hours to check Sinatras vitals. Even if the nurses are very quiet we did notice that when they wear crocs, the crocs squish on the floor so loud that it can wake Sinatra up.  Crocs may need to redesign the sole of those shoes!!!!

Standing up after some good pain meds.

We are glad to be home and Sinatra is getting some great sleep in her own bed.  Sinatra still isn't eating great but she remains happy and energetic.   We have started chemo again and will finish our last treatment of this phase on 4/4/14.  After that we will be anxiously waiting for the bone marrow aspirate procedure on 4/11/14 and the results the next week.