Relapse Cycle 1 - Day 2

Wednesday, August 26th

Avery had an OK night in the PICU. It wasn't restful at all, but she was stable and not in any pain. They had planned to wean her from the vent overnight, but she failed both of her cpap tests. She was not sedated, so each time she woke up, she had a look or terror in her eyes. Then, once she realized her arms were restrained, she got even more scared. The nurse and I spent most of the night running back and forth to her bed trying to calm her when she woke. She quickly realized that her feet weren't restrained though, and she got a hold of the iv in her foot. She had the tape removed, but thankfully the nurse caught her and got it fixed.

They determined the episode yesterday was caused by critically low sodium levels as opposed to hydrocephalus. That was a huge praise despite the worry and concern it caused all of us. The symptoms of both are very similar, and given Avery's disease and widened ventricles, they had to act fast in case it was pressure on her brain. Her sodium was in the 120s. They were able to give her 4 boluses of 3% Sodium Chloride to get her sodium back to an acceptable level of 140. She is now on a 3% drip until her body can prove it can maintain the correct levels. They believe her issue could have been caused by Cerebral Salt Wasting Syndrome. They can only administer the 3% Sodium Chloride in the PICU, so we will be staying here until she is able to come off of it. They will be checking her sodium levels every 4 hours to ensure she is staying where she needs to be.

We spent most of the morning comforting Avery when she woke up on the vent. She finally passed the cpap test, but failed the cuff leak test. Because of this, they gave her additional steroids and some more time. She was finally extubated around 2pm today. As soon as the vent was out, she opened her prizes and played for a little while. It was the most responsive she has been since Monday night. She quickly tired though and got a good nap in this afternoon. Her throat is a little sore and she's cough some from having he vent, but hopefully all of that will resolve quickly.

I was worried how Avery would react to the medical staff and procedure going forward given the trauma of the vent and EVD, but she has done excellent so far. We were able to give her a sponge bath. She is wearing the hospital gown, and she is wearing a blood pressure cuff, pulse ox, and chest leads 24/7 with no issues. She is even tolerating the light in her eyes during neuro checks.

All teams agreed that she had to start her 2nd day of chemo today. Thankfully the set back only cost us one day, but everything is time critcal right now with no days to waste. She received her last dose of cyclophosphamide and her daily oral chemos tonight. She will continue 5 more days of oral chemo, and we will get a final IV infusion of irinotecan on Monday. They will monitor her very closely for the next few days before they will send us home. We expect her counts to start dropping, but we pray we can stay fever free.

Thursday morning they plan to restart feeds and remove her EVD! We hope this will get us one step closer to getting transferred back to 8 Quarterback. We have had wonderful care here in the PICU, but we are ready to get back to the people we know and love that have taken such good care of us over the past year.

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(they plan to do it bedside)

- Complete healing