Wednesday, September 25th
We had a rough start to the day. I woke up shortly after 12:30 am to check on Avery and realized that her NG tube had gotten pulled out. She was dead asleep so it wasn't intentional which hurt my heart even more knowing that she would have to endure another tube placement. The nurse checked with the on-call Doctor, and he wanted to replace it during the middle of the night. I, along with our wonderful nurse, was able to advocate for us to wait until the morning. We agreed it would be done at 7am. Avery slept extra hard through the night due to exhaustion from the day before.
7am rolled around quickly, and we had to wake Avery from a deep sleep. This didn't help her mood at all, but they were able to place the tube again(in the other nostril this time). She squirmed a lot though, so they had to order an x-ray to check the placement before they could start her feeds. Luckily the x-ray showed what they needed, and they started her back out at feeds of 10mL per hour.
Avery slept on my couch bed solid from 8-12:30. Between the lack of rest and the IV Benadryl, she slept hard. She also received a blood transfusion during this time as her numbers were slightly lower than the day before. Her platelets were up though, so no need for another platelet transfusion. Her ANC still remains at zero.
It amazes me how quickly she perks up after the blood transfusion has finished. She was back to her old self and ready to play and make slime... which is exactly what we did for most of the afternoon!
Shon spent the afternoon/evening with her while I took the big girls to soccer and to eat Birthday cake at home. He said she was in a good mood, and they made more slime and squishies!
She is still trying to get an appetite, but it's just not quite there yet. She ate half of an Insomnia cookie and drank some water. At bedtime her feed rate was up to 40mL per hour. We should hit our goal of 56mL per hour by morning.
Her hair has finally started falling out. She is shedding everywhere! She thinks it is funny to grab handfuls of hair and hand it to us. A hair cut will be in her near future. We've been preparing her the best we can for this change, and she seems to be in good spirits about it overall. As Ella put it "She will be the cutest bald almost 6 year old ever!"
We are ending the day with her last dose of Vincristine(chemo) this cycle. She will continue to focus on recovering from this cycle. The transplant team came by again and believe we will have to wait to harvest stem cells until the next cycle. The expect her to be "recovering" over the weekend which is when they need to collect, but this is not a procedure they do on the weekends.
Please continue to pray for:
- Her ANC to increase
- Continued rest
- Continued tolerance of the NG tube and feeds
- More good days than bad
Dear Heavenly Father, I call on the name of Jesus. Please, hear my prayer for Avery! Give this little girl sleep when she needs it, courage when she's afraid, patience when she wants it all to be over, calm when she's irritated, and Healing of every cancer cell in her precious little body! I have so many questions of WHY? I'm certain Lori Beth and Shon ask Why Lord? Give them the Peace to trust your Heart when they can't see your Hand! I ask all this is the Name Above All Names, Jesus Christ! Amen and Amen!
My prayers continue for this precious courageous baby girl, as well as for all of you!! There isn't a day that goes by that I don't check for an update on Avery's progress! So many of us want to moan and groan about things called "life" but following Avery's story quickly gives us a reality check! To see what she has already endured in her young life will certainly put things into perspective for a lot of us! God keep you all in His hand as I continue to keep all of you in my prayers!
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Prayers for you, for your sweet Avery, for the dad in the family, and the two other babies at home. God Bless you all!!!
My heart hurts for precious Avery and all her problems with her tube. I hope it stays firm this time. Hope she thinks of something to eat and eats tons of it. With that adorable face she will be even more adorable with no hair so that sweet smiles shows up even more. Love you got to be with Ella and Lexi a bit;. Love to all from Scottsboro.