Lazy/Good Day

Hello Ava friends! There is not anything new to report. She's been getting better and better. Dr. Shilyansky came by this morning. Ava was so surprised to see him. She says, "Is that you Dr. Shilyansky? I didn't know if I would see you." She is a character. He was happy with how great she looks and that she was eating and having bowel movements and walking laps. She is a go getter! I'm still not letting her eat too hard of things. She had scrambled eggs, steamed rice and green beans today. She's been drinking a lot more fluid too. They cut her TPN down last night. It was at 45 and her lipids were at 5. So a drastic cut from 90/10. I'm okay with all of it as she is finally pooping good.

This is our 18th day in the hospital. I can't believe we have been here that long. She was on the NG tube suction for 9 days. Seriously I don't know how she endured all of that. God is always helping her... holding her up. I'm so grateful for being able to care for Ava. We have bonded a lot this month. I've gotten to know many things about her. She's a bit crazy but I totally get it. I love her so much! What would I do without her? We've laugh so much. We've had some really tough days but in the end it's precious memories. Did she get furious with me? She did! I understood her anger, she just needed someone to be frustrated with and it just happened to be me. We get told we look a like. She's got spunk this child of mine. I'm super proud of the young lady she has become. We've had really good doctors, nurses and hospital staff. They made our lives bearable. They all listened to my concerns and adjusted things to fit us. This new Children's hospital is so state of the art. We've been blessed!

I made a visual to show the progression of her surgery and the obstruction. She does feel better than she did after surgery with eating and BM now so that is a turn around that makes me feel better, She's on day 3. She started drinking and soft food on Wednesday.

She was tired today so she napped while I did the hospital art project for the patients. They bring in the supplies then you turn the TV to a certain channel and the lady walks you through each step. It was art using tape and crayons. I did a poster of Ava's name. It helped pass the time. I also painted a picture the other day. Painting is an outlet that relaxes me. It takes my mind off stress and puts them in a place where I can create anything.

Her stomach scar still has the red "blister" like thing on it. The doctor was able to drain it a little today just by pushing on it with gauze. Eww! She says it doesn't hurt at all. I wish it would have healed like the rest of it. We will just have to keep a close eye on it. All in all the incision looks great for being 19 days old.

She got her PICC line dressing changed this morning. Kelly our nurse was changing it while talking to Ava about tictok. She didn't even flinch. I showed her Ava's video about being a CDH survivor. She says... "You are a tictok star. Ava was like... ah... no.  

She is allergic to Chlorhexidine (the burn that happened with the IV dressing and chlorhexidine that is on the bend of her right arm.) so they use betadine on her.

Keep the prayers coming and thanks again for checking in on Ava. She appreciates all the support, love and prayers. It's been a rough month and we are praying to just be in the healing stages now. God Bless and have a great night!

-Terri