I went to start this post and realized that it has been almost a week since the last time I wrote. I didn't mean to leave you hanging, but honestly, days just blur together when you are in a room with no windows and lots of beeping machines. I'm so sorry.
Averi has slowly been making improvements. She was much sicker this time so her recovery is taking longer but it is still happening. On Wednesday the diuretics kicked in and she lost 2 pounds of fluids in one day. Her face looked tons better (and more like Averi) but her hands and feet were still pretty puffy. The rest of the fluid will take a while to get rid of.
Since her fluid was going down and they could turn down the pressure on her vent, they also took her off the paralytic. She was still sedated so she wasn't awake very much, but when she was she could actually open her eyes and look around. Being off the paralytic also meant that she was back in restraints to keep her from tugging on the tube. I guess you win some and lose some.
The end of the week consisted of slowly weaning the vent until she was able to breath over it. On Friday night she decided that she was done with the whole ordeal and tried to extubate herself. We saw the tube come up and lay sideways in her mouth before miraculously sliding back down her throat. After an x-ray was done to make sure it was in the right place, the tube was re-taped. They even started giving her feeds through her G-tube and were able to turn off the IV nutrition.
Saturday came and Averi was doing so well that they decided to extubate her. I assumed she would have to go right onto CPAP again but she did surprisingly well and only had a nasal cannula put on. Being extubated came with its ups and downs. The up - we finally got to hold her for the first time in a week! Dan was there when it happened so he got to hold her first (I'm not bitter).
So by the end of the day Saturday she was a little more awake and mobile, although still very tired, and the only cords she had attached to her were her G-tube, oxygen, and heart rate and oxygen monitors. It was a good day.
Today was a pretty mellow day. Other than going through withdraws and wanting to be held, which we can do now (I know I already mentioned that but I'm pretty pumped about it), they just continued to wean her meds and oxygen. We were even given the hope that she might be discharged from the PICU and go back upstairs tomorrow. Averi has been here over a week now and we are so ready to see sunshine again and get on with this chemo.