Aya- Baya

Hello everyone. Ava had a good night. She wanted to keep talking to her sister Emeline on Facetime... Emeline is like a super big dose of a love drug for Ava. Anytime Ava calls her (even if she is at work) she answers her if only to say she can't talk that she is busy. I'm grateful that Ava has both her sisters full support and attention right now. Lexis as well as Emeline encourage Ava and they let her just sit and see and hear their normal everyday lives with their dogs, Willow and Bolo to make her feel their 'normal' routine. She talked so long that it was 11:30 before we all got settled in. I sleep on the pull out couch here and Brain sleeps in a very nice long and big chair that can recline. I cover the day shift and he covers the night... although since she has been sleeping pretty much all night he stays up with us and then sleeps at night too unless Ava needs his attention. She slept all night but woke at 4 AM. She was able to watch her movies and talk to her dad. I'm so thankful they allow 2 parents. The night seems to be the best thing for her right now. Sleep the horrible tube away.

There is a new rule here at the hospital for parents whose children are admitted... each day we must go to the front desk at the unit and get a sticker that says our name and that we have been screened for Covid-19. They ask... Have you had a fever in the last 24 hours? New or worsening cough, shortness of breath. or sore throat? Since we have been here it's been a rule that you MUST wear a face mask anytime you are outside your room or if a staff member is present. It's been weird to try and remember to do this. It's almost second nature and it's sometimes easier to just keep our masks on then to keep putting them on and taking them off. I love that they are being so proactive yet I'm asking God to keep Brian and I healthy. Covid has shaken this world to the foundation and doesn't seem to be letting loose anytime soon. 

Sadly she can't put anything her mouth. We have tried throat numbing spray, cough drops, candy and ice. They just make her gag and retch. When she is awake her nose runs constantly. Last night they redid her face tape because she said the stickers were burning her skin. After they retaped she couldn't stop sneezing. It was awful but we kinds made light of it and she was laughing. I actually sneezed too. It was crazy. Then her nose was all stuffed up for several hours. She could barely breath. The doctor says it's the tube is making her have cold-like symptoms.

Ava resting well.

Ava kinda shocked us today when she said... "I understand now what this tube is doing." I know I explained to her several times how the tube would help her feel better and make her insides rest and heal. I don't know if she just tuned me out when I was explaining because it hurt so bad after surgery or what but it was a huge hurdle she overcame today. I'm so proud of her.

She walked 5 laps around the unit today. Listen you don't understand what it takes to get up and move when you have a hose in your nose going down your throat. The tube tickles your nose and releases the sneeze response. Ava has sneezed 19 times today. Her nose runs and her throat hurts so very bad. It's mind over matter. I was told from my sister's fiance that has done this obstruction process many times. Ava is incredibly strong! She walks so fast too. We went two laps all at one time today for one walk. Go Ava! 

We have been playing lots of games. UNO is our favorite. We were trying to play Clue today, we got all the pieces out was ready to start and realized there was no dice. Great! It's hard passing the time. Ava can't eat so Brian and I have to sneak and eat. She told me tonight, "Mom I wish I could eat my favorite"... creamed beef on potatoes and gravy. Me too Ava. Me too!

We know that the doctors don't know what God does. They can't predict the future. Praise the Lord that we have a God that loves to work Miracles. He turns lives around and pours His love out. We don't know what tomorrow brings but we know who holds tomorrow and that is our God.

Ava finally got a full shower tonight. I am in awe of her strength. We had a bad day yesterday and she turned it around. I hope she doesn't mind that I share this... she says, "Mom whatever it takes I'm going to eat and drink soon." THAT IS MY GIRL! Keep us in your prayers. Days are long when you feel sick. We use humor to get us through. The music therapist was in again today. I LOVE her. She makes me relax and just live in THE moment. She brought in a ukulele. She taught Ava to play the Trolls song "Got this feeling". SO FUN. Ava wasn't thrilled but to me it was pure heavenly music to my ears. God is so good. He is faithful. I'm so grateful for every moment I breath.

So all in all today was good. Ava struggles with the tube. She still gets nauseous and has to split in her container. It makes her nose run a lot. She has gone through a box and a half of kleenex's. Her output is still very high but it is better than yesterday. Her CRP was down so that is good. It shows when your body has inflammation. Hers did but now it's back down. They are giving her extra fluids because her NG output is large her pee output is very low. It has to be balanced. Slow and steady wins the race... pray for Ava's race.

Good news is she isn't having a lot of pain, mostly just her raw throat and when the ng gets caught on her stomach wall and stops pulling it out. It upsets her belly so bad. No one likes to feel sick.

Thanks for your LOVE, SUPPORT and PRAYERS. God hear them all!

~Terri