This morning the resident stopped in to inform us that Averi was finally ready to go home. It was a pleasant surprise.
Heart-wise, her recovery was great. Twenty-four hours after the surgery, the central line, arterial line, drainage tube, and catheter had been removed, and Averi was moved to her own room in the step-down unit. Her poor sensitive skin looked like it had been through a battle and lost.
Averi was swollen for a few days and very lethargic from all the pain medications. She looked so small in her big crib (she sleeps in a bassinet at home).As she started to feel better and look more like the Averi we all know and love, we were able to hold her. Kaili is always so intrigued by all the stuff stuck on her baby sister.
I’m pretty excited that Averi has become a thumb sucker, but it was problem when they decided to put the IV in her thumb. We kept having to cover her hand with a blanket because she scratched her face up trying to get to her thumb. I just love those big eyes.We were really impressed with Children’s during Averi’s NICU stay so it was frustrating that several problems arose during this stay. First there was an issue with her G-tube. It came out one night and started bleeding. As it turned out, someone at the hospital had overfilled her saline balloon. (There is a small balloon on the end of the tube that is inflated, after the tube is inserted into her stomach, to keep it from coming out.) Her’s is usually filled to 3 cc, the max is clearly labeled as 5 cc, and it was filled up to 7 cc. Being so full it caused a lot of damage coming out and no one seemed to know why it had been messed with in the first place.
Another thing that happened involved her IV. After a few days it started to stink. I finally convinced the nurse to change the bloody tape on Monday, 5 days after it had been put in. She ended up taking out the whole IV because the plastic piece had rubbed an open wound. They swabbed it and it came back positive for Staph. So now we are treating that and keeping it covered, and all Averi wants is her thumb back.At least she has another thumb to suck, even if the left one isn’t her favorite. She often puts herself to sleep like this. I love it!Yesterday was a week from her surgery so they took off all the steri-strips and gauze. Her incision is a lot longer than I thought it would be but it is healing nicely. The big scab at the bottom is where the drainage tube was.Cardiology said we could have gone home a couple of days ago but we have been trying to fix her G-tube issues. Yesterday morning they did another video swallow study, where they x-ray her as she drinks different consistencies of barium. All of the thicknesses showed aspiration (breathing in the fluid), which is probably due to the laryngeal cleft. She is also refluxing very badly and aspirating on that as well. To help fix this, GI put her on a 24 hour continuous feed. Now she is attached to the apnea monitor and a food pump. I’m really looking forward to grocery shopping. :)
Kaili was excited to ride out to the car in the wagon with Averi. We are once again excited to all be together again. Hopefully there will only have to be one more hospital stay!