Still Fighting

Saturday, May 8th

Avery is still fighting hard. We finally have her in a mostly comfortable state, but it was not easy getting to this point. I am hesitant to share, but I realized that in order to bring awareness to this horrible disease, we must share the ugly moments even if it makes us uncomfortable.

Tuesday - As soon as Avery was brought to her room, they got her port accessed in case we needed it. They started her on low maintenance fluids of 32 mL/hr to keep her hydrated since we cut off all feedings on Monday. She seemed to be unaware of where we were or anything going on around her.

Wednesday - Avery slept the majority of the day and seemed to still be unaware that we were at the hospital. She was on scheduled pain medicine and steroids. It was a mostly uneventful day. She went for 20 hours without having a wet pull-up(decreased urine output is common at end of life). She was constantly moving her hands... picking at her eyes, lips, nose, ears, and neck. In the middle of the night, she removed her port dressing. It moved just enough to stop returning blood flow, so they had to reaccess her port around 3:30 am.

Thursday - Thursday morning and early afternoon, she was especially sleepy. We were able to get painted hand prints and clay molds of her hands and feet without her stirring at all. Her respiration rate dropped to 7-8 respirations per minute. She was retaining fluid in her feet and hands, so they reduced her maintenance fluids to 16 mL/hr to ensure she didn't begin collecting fluids in other parts of her body. The picking and constant moving of her hands from the day before quickly turned into all out scratching Thursday evening. She was causing whelps and small breaks in her skin. They started giving Atarax to help with the itching. In the middle of the night, Avery once again messed with her port. This time, though, she completely deaccessed herself. This led to another 3 am port access.

Friday - The itching continued so they added in scheduled Benadryl and a Narcan drip(in case the itching was caused by the opioids). She was extremely restless all day. She would moan, and her heart rate would jump into the 130s. She did not want to be touched at all, and she pulled at her port all day long. We even put her button down shirt on backwards to try and prevent another deaccess. By the afternoon, she was having hallucinations and delusions. They were able to add in scheduled Haldol which helped with those symptoms and finally allowed her to rest. She slept soundly Friday night.

Saturday - Avery was still getting very restless and agitated when the Haldol started to wear off. They are decreasing the time between doses and have given us a PRN dose in case she becomes too uncomfortable. She slept peacefully for the majority of the day. Her respirations are fluctuating between 4 and 10 per minute. Her O2 sats have started dipping into the 80s, and her breathing is shallow. Her lungs are still clear, and her heart rate is still strong.

Shon and I are positive that bringing Avery back to Children's was the best decision. We wouldn't have been able to keep her comfortable at home. Avery, Shon, and I have been treated with such love and grace since we got here. We are so thankful for this amazing hospital and the amazing people that work here!

Please continue to pray for:

- Avery's comfort and symptom management

- Peace and understanding

- Strength as we prepare to say our earthly good byes