Back home

Hello everyone,

We are back home as of yesterday eve from the hospital. We are so sorry we didn’t get a chance to update while in hospital. Ava’s surgery went well, the surgeon was happy with his work. We were at the hospital really early, as Ava was the first case.

The surgery took about 3 hours, however the doctors had an extremely hard time getting an IV in the OR (over 1.5 hours, 😓). Ava’s a really hard start for IV or blood work. The surgeon reconstructed her perineum, creating a new bum hole, and cutting out scar tissue from the previous surgery. We were admitted into the Peds surgery ward again.

The first 24 hours was the hardest. Ava was put on a morphine infusion for the first time (she is usually on a different drug called dilaudid which is a stronger form of). She was very sensitive to morphine and wasn’t helping with the pain. It was a long night trying to do anything in our power to keep her comfortable. She had 2 IVs, one in each arm, a catheter, and cardiac monitor leads.

She needed to be on 2 IV antibiotics to prevent any infection. Her pain got under control after a couple days. We struggled with keeping the IVs patent as they don’t last long in her veins. Her catheter needed to stay in for 5 days.

On Monday, we experienced a problem with her ostomy as it began to prolapse (meaning the intenstine now extends out of the stoma with any stress of abdominal pressure). This makes changing and managing her appliance a bit challenging, but still manageable. We had to try new products that are a bit bigger and better suited for this. This felt like a big set back for Landon and I as her ostomy was working so well for us. It is working well now with her new appliance and shouldn’t need any further surgery until reversal.

On Tuesday, the doctors took her catheter out and trialed seeing how her incision handled urine on it. We must keep it as dry as possible just like before using specific dressing supplies.

Ava unfortunately caught a cold virus while in hospital. This made it bit harder for her to rest with trouble breathing through her nose at night 😓.

This hospital stay was different for us 3 as Ava had grown so much and wants to be active, which is a good thing- but challenging with many cords, lines, and fresh incision. She is such a tough girl, she still blew our minds how well she handled pain post surgery. We have Homecare coming to help monitor her ostomy and incision and provide us with supplies. She is to see her Pediatrician and surgeon next week for follow up.

Thank you everyone for thinking of Ava with this surgery and all the prayers. ❤️ we will keep in touch.