Thursday, November 14th
Avery slept decently most of the night until she woke up vomiting at 3:30 am. After we got her cleaned up and back to bed, she slept until about 7. She woke up in a decent mood and seemed to have a little more energy than yesterday. Her electrolytes were still a bit off, but they are working to correct that with supplements through her NG tube. Her blood counts looked good, and her blood cultures are still negative. Her ANC is down to 50. Given her ANC and the fever, she is officially neutropenic which has landed us here for roughly another week(or until her counts come back up). As nice as the idea of being home a couple of days was, staying here is what she needs, and it eliminates some of the trauma of going to the ER.
Since we were definitely not going home, she had to have her port deaccessed and reaccessed again. This has to be done every 7 days to cut down on risk of infection. She was deaccessed and had her IV removed late in the morning and mostly handled it like a champ. They allowed her to be "free" until later in the day. She was starting to feel pretty puny again by this point, so she took a good long nap right past lunch time. She was running a low grade fever, but a dose of Tylenol seemed to perk her up. We took advantage of not being accessed by giving her a nice long bath complete with bubbles and a bath bomb. This left her feeling and smelling much better.
She is already starting to show signs of mucositis. She has a sore throat, some questionable places in her mouth, swelling in her mouth and lots of mucus. We are hoping that this time won't be as bad as last cycle, but not too confident. She has continued to vomit a few times today, which paired with the mucositis, leaves her feeling miserable.
She did relatively well getting reacessed (aka getting her noodle), but the previous week had finally started to take its toll leaving her exhausted and angry. She is now down resting for the night. They will be coming in soon to give her the nightly Neupogen injection, which hopefully she can sleep through.
Please continue to pray for:
- No more vomiting
- No more fever
- Minimal side effects from mucositis
- Better energy tomorrow
- Counts begin to rise
Prayers for a restful night and for a good day tomorrow. I can’t begin to imagine what this precious child is going through and how much it hurts mom and dad watching their sweet Avery deal with so much pain. May God grant all of you rest for tonight and renewed strength for tomorrow.
Praying for this precious child. May God take away the symptoms of the mucositis, the vomiting and bless her with restful, healing sleep. God bless your whole family as you go through this with your sweet baby.
God i am still asking you for complete healing for this sweet Avery's little body. God please, touch her and help her git rid of all of these terrible side effects from this medication. God i ask that you give her strength and her mom and dad and sisters strength because you God are the only one that can do this. God also be with her grandparents and hold them up and give them strength. All this in Jesus name....Amen SARDIS CITY WATER BOARD EMPLOYEES LOVE YOU AND YOUR FAMILY
God bless you sweet Avery! Prayers continue for you and your family! I especially pray that today there will be no fever, no vomiting, minimal side effects from mucositis. I also pray for increased energy for both of you.
Bless her heart. Hang in there momma. I know this is hard for all of you. I continue to pray for all of you. 🙏💕