Relapse Cycle 1 - Day 3

Thursday, August 27th

Avery had another restless night last night. She woke with a headache that we battled all night. Two doses of Tylenol didn't provide any relief. They didn't want to give morphine while her heart rate was intermittently dropping in the 50s, so she was awake most of the night dealing with pain. We tried watching TV and playing the iPad (anything to help her relax). They finally were able to give her morphine around 7:30 am which provided some relief and sleep for her. She continued to battle headaches most of the day.

Her sodium first thing this morning had dropped to 138, so they added a bolus of 3% in addition to the continuous drip. Once her sodium was back above 140, they lowered the drip volume and added an oral supplement every 8 hrs. Her sodium is the only thing really keeping us in the PICU right now. At the end of the day in order to keep weaning her from the drip, they upped her oral supplement to every 6 hrs. Hopefully sometime tomorrow we can be off the 3% and get moved to a step down unit. They continue to do sodium checks every 4 hours.

They had planned to remove her EVD today, but she had one episode where her ICP(intracranial pressure) jumped that caused them to delay removal. Neurosurgery has ordered a repeat CT scan to check to ensure that her ventricles have not enlarged any since Tuesday. If the CT scan looks good, the plan is to remove the EVD tomorrow morning. Unfortunately to give the neurosurgery team time to review the scans before rounds, they will be taking us down to CT at 4am(ughhh).

We began Avery back on feeds late this afternoon. She hasn't had anything to eat by mouth or tube since Tuesday morning, and I have no idea how she is not starving! We will slowly increase by 5mL per 4 hours until she is at goal. Due to her history with vomiting, they have change her feeds to Neocate Splash which is a more broken down formula and should be easier on her stomach. Before we could restart her feeds though, we had to get a little drama out of the way. Avery's NG tube broke this morning and was leaking when the nurse was giving Tylenol. This meant we had to replace it with a new one which is always a traumatic event. It took 4 of us to hold her and get it in, but she did better than earlier in the week.

Avery was a little more playful today. She painted a picture and did some Legos. She was easily tired, but it was promising to see her doing fun things and being more alert.

She received her Day 3 chemo which is all oral tonight. We have 4 more days of chemo left in this cycle, but I'm not sure if any of it will be at home as originally planned. As much as we wish we were home, we know we are in the exactly right place for Avery to get the care that she needs right now.

Please continue to pray for:

- Minimal side effects from the chemo

- Protection from viruses and illness(especially as counts drops)

- Successful and non-traumatic EVD removal for Avery

- Getting moved to a step down unit soon

- Complete healing