Friday, October 11th
As excited as we were to come home, it has been a rough couple of days for our sweet girl. She has been vomiting 5+ times per day and feeling overall terrible. She's not been sleeping well at night and crying of throat pain(most likely mucositis).
We went to clinic today for labs. She was down to 18.7kg and dehydrated causing her blood pressure and heart rate to be elevated. This, coupled with a temperature reading of 100.0, almost landed us back inpatient. They gave her 400mL of fluids over the course of 30 minutes which really helped stabilize things and allowed us to come back home. Surprisingly, she needed no blood products today. Her ANC is at zero, so we have a strict no visitor policy right now!
I feel like we weren't adequately prepared to deal with the nausea and hydration issues when we were discharged on Wednesday. The meds they were pushing in the hospital were barely making a dent in the problem, so I don't know why they thought Zofran every 8 hours at home would be any better. Luckily at clinic they gave her Aloxi, and we have been vomit free for 12 hours now. They also sent us another prescription home to use tomorrow and Sunday. The doctor and NP helped put a plan in place to maintain her fluids over the weekend. We have stopped all feeds and are pushing 50mL per hour of Pedialyte Advanced Care through her pump/tube. This should hopefully sustain us through the weekend fluid wise.
This is another part of the journey that leaves you feeling extremely vulnerable. Home should be the place that you can rest and feel safe, but when you are worried if she needs fluids, platelets, red blood cells, magnesium, K-Phos, etc... home can be a terrifying place!
Our goal is to make it through the weekend fever free and without any other symptoms. We report back to clinic Monday for counts and most likely blood products; Wednesday for her last does of Vincristine, and then again Friday(or the following Monday) for stem cell harvesting.
Please continue to pray for:
- No more vomiting
- Her ANC to start rising
- No fever or other symptoms
- Rest and an increase in energy level
Continued prayers for your precious baby and your family!!
Continued prayers for all of you. Please take care of yourself too. ❤️
My prayers remain the same for all your needs for Avery to be met and exceeded. I especially pray that she stays home until she has to return and for you all to enjoy each other and get a little rest before it starts again. When all these medicines do their work and she is again cancer free, I know all will feel like it was worth the "Horrible" journey to be well again. I hope that comes soon. Love you .
God love this precious child. Every day I read your blog and see the pictures of this precious one, I pray and cry out to God for a miracle for this sweet child. My heart is broken into for Avery and for all of you that love her so very much. I can not even begin to imagine all of the emotions you are feeling every minute of every day. May God surround you with the peace that surpasses our understanding, peace that only He can give. I will continue praying and believing for a miracle for this precious child. I ask God to bless Avery with no more vomiting, for her ANC to start rising, no fever or other…
Praying for your sweet baby girl and your family! I will be adding her and you all to our prayer list at church Sunday morning! From what I’ve read on your posts, sweet Avery seems like such a big fighter and you’re doing great Momma! I can’t even imagine but I’m sure it is far from easy!! I went to school with Shon (once upon a time!) and Ms. Deborah was my teacher in elementary school so I have been following your story through her Facebook page! One wonderful thing about Facebook is that it connects so many people and allows them to pray for each other regardless of whether they know each other or not and prayer is such…