Friday, February 14th
Last night was another rough one. Avery tossed and turned and moaned with her stomach for the first part of the night. At 2:30 when I checked on her I realized she had had an accident. She refused to get out of bed until they gave her something to help with the pain. We got to the bathroom and got cleaned up when she started to vomit. The tube came up immediately when she vomited. At her request, I took scissors and cut both ends of the tube leaving a 3 inch section secured to her face with tender grips and tegaderm. We will eventually have to remove the dressing, but her cheek is so tender and has been through so much, we are allowing it to stay for now.
After she vomited, they gave her a dose of Ativan because it wasn't time for Benadryl yet. This caused her trouble going back to sleep. I sat in the chair beside her bed as we listened to music until 4am, but sleep still didn't come. After her 4am vitals, I left her with my phone and went back to lay on the couch. I think she finally dozed off around 4:30.
Her ANC was around 5400 today, and she didn't require any blood or platelet transfusions. They switched all of her meds back to IV and increased her TPN again. We decided to give her a break from the tube through the weekend. We will regroup Monday to determine what to do next. They may try a weighted NG tube.
She was excited about Valentine's Day when she woke up today. She opened her gifts and played most of the morning. She enjoyed handing out Valentines with suckers to all of the staff that came in today. She even lost her first tooth this morning! She took a nice long nap midday and was back to playing with Legos and slime this evening.
The issue with feeds in another small setback that will prolong our stay. We can't go home when she can't get nutrition, but she can't get =nutrition unless she can handle the tube and feeds better. We are both a little less anxious going into bedtime tonight knowing that we don't have to stress about losing a tube for the 3rd night in a row.
Please continue to pray for:
- No more vomiting
- Tolerate nutrition and medicines
- No new complications
- Rest
Valentine's Day is so special. I know all your staff loved their card from you. So happy you enjoyed your gifts and slime is so much fun to play with. Sorry about your tube, praying for a new solution for nutrition and much needed rest tonight for you and mom.
Praying over you guys every day❤️ Complete and forever healing in Jesus name🙌🏼
I just read several posts in row and I am so sorry for Avery. She is definitely being strong but she’s just a little girl. I can’t imagine what you are going through, as well as Shon and the twins. I’m praying for Avery constantly. She is truly always on my mind. I will continue to pray. Thank you for sharing information during this most difficult time in life. Both you and Avery are inspirational and brave. Fighting so hard and still we see smiles, it’s amazing to me. I will keep praying specifically for what you’ve asked.
Praying for no more vomiting, that Avery Will be able to tolerate the nutrition and medicines,no new complications and a restful night for both of you! God bless you all.
Praying for this sweet girl to be able to have a solution found for providing nutrition.