Tuesday, September 24th
Today was one of those tough days... the kind you don't really want to recap or relive, but here we are. We had a poor night of rest last night which set the stage for the rest of the day. Avery's platelets were low again, so we started the day with a transfusion. Her other blood counts were borderline low, so we held off on a transfusion, but she will likely need one tomorrow. Her ANC still remains at zero.
The team came by during rounds, and we agreed that we should proceed with an NG tube today. Not only is Avery not eating or drinking, her electrolytes were severely impacted by some of the chemo, so she is requiring additional supplements. These will likely be needed long term, and given her aversion to taking medicines orally, we had no other option than to get the tube.
I made the choice to leave the procedure room for them to place the tube. In that situation, I could provide no comfort, and it would have only been added stress for both of us. Just as always, it was still gut-wrenching to leave her screaming in the arms of someone else. A short time later, they brought her back to me. No sooner than she was in my arms, she ripped her tube out. We decided to take a break for a couple of hours. We had a 30 minute bright spot when we went to paint ribbons with Smile-a-Mile. Avery had fun painting and even managed to give me a smile.
Then it was time to get her tube placed again. I gave her the choice this time, and she wanted me in the room with her. This didn't make matters any better, but they got the tube placed. She almost got in out again when we got to our room, but we caught it just in time. She was extremely worked up, so we decided to give her something to calm her nerves. Unfortunately, this had an opposite effect, and we dealt with an out of control, raging 5 year old for the next couple of hours. She was so exhausted, but continued to fight sleep with everything she had. In the end, Avery won.
Shon came by late in the evening to visit and bring Avery a gift from his co-workers. This really seemed to lift her spirits, and we had a nice little stint of family time. She even managed to eat half of a sandwich.
She started her feeds at 10mL per hour, and we have now increased to 20mL per hour. We will slowly increase her intake until she hits the goal they have for her. Hopefully the tube will stay in that long.
Please continue to pray for:
- Her ANC to increase
- A restful night and day tomorrow
- That she will tolerate the NG tube and quickly get used to it(we're told that happens)
Continuing to pray for complete healing.
Isn't it amazing how seeing our child go through something we can't fix for them can rip out our heart? I know you hated leaving her for the tube, but maybe she will let it stay in until she can build up her strength, get some nourishment, and take away at least that one worry for her that you both have. I started to ask where you get your strength - - - Jesus is that answer. Keep the faith Lori Beth and Shon! Prayers do work, and I do believe everyone in this state and a few others are praying for your sweet girl and for you both! I hope Miss Avery has a very good restful sleep toni…
My name is Melissa McGriff you don’t know me but I am friends of the Conn family. I am praying for Avery and your entire family. I pray for strength comfort and healing.
Wow. What a day. I can’t help but think that her stubbornness is going to end up “helping” her at some point along this journey. Hang in there mamma. One day at a time. Continued prayers for all of you. 🙏💕