Thursday, September 10, 2009

Home Again - 9/10

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!


Stephanie said...

Poor little Averi. I'm glad she's able to be home though. It was nice seeing you the other day, it seems like life happens and then I miss you.
I love the picture of Averi sucking her thumb in bed. What is it with the left thumb? Cole loves his left thumb also. :) She is so beautiful.

Nicki said...

I hate that she had to go through some extra trauma because people weren't being careful. She's sucha cutie though. As a previous thumbsucker, I hope her thumb heals quickly.

Sara Emily said...

I'm so glad she got to come home!!! That is awesome. I'm so happy she healed so quickly as well. Too bad about the other issues. I do love the pic of her sucking her thumb... so cute!!!

Vanessa said...

Way to go little Averi! Your Aunt Nessa is so proud of you and how strong you are!

Lauren in GA said...

I agree with you, I love those big beautiful eyes, too.

I am so, so, sorry about the complications due to mistakes made by the hospital. Staph is so dangerous, I am so glad you convinced the nurse to change it. Great job, are an awesome advocate.

I feel so close to you...we have the exact type of apnea monitor and we have the same kind of white socks that they used on Averi's arm from the hospital. Oh, and the Children's hospital here also has those awesome wagons! are so amazing. I'm just sayin'.

Soggy in Seattle said...

I love that last photo, Kaili looks so cute & happy to have baby sister coming home. I'm glad that Averi has pulled through so well & that you are all back together. I am sorry, however, that there were so many complications post-op. That poor girl just can't seem to catch a break! I hope her thumb clears up soon, that picture of her sucking her other thumb is adorable. I love you all & will continue to keep you in our prayers.

Screwed Up Texan said...

What a BEAUTIFUL little baby! I Heart Avery :) Saying a prayer for your family.

brandy said...

That poor little baby. She is so darling sucking her little thumb. Usually I'd say nip that in the bud...but there hasn't ever been a cuter thumb sucker in my honest opinion...EVER. And she needs some comfort! SO CUTE! Thanks for the update, it was nice to see her back with you guys on Sunday.