I'm so sorry for the lack of posts!!! Ethan is doing awesome and he is rocking his repaired heart!
Ethan came back from surgery to the CTICU extubated and doing awesome! We got to see him within an hour. He had his eyes open!!!! He was super swollen (gained an entire kg or 2 lbs in 24 hrs!!! his weight is back down after aggressive IV lasix) but still looked incredible. Seemed like he was having quite a bit of pain, but he was sleepy on the pain pump. He was transferred to the step down unit within 24 hours.
We did have a rough couple days after surgery. He was suffering from severe reflux so he would gag, choke, dry heave then have a lot of pain. The best pain regimen was scheduled Tylenol and ibuprofen around the clock. He only needed oxycodone for the 1st and 2nd post op day. He had a few episodes of desaturations and coughing/congestion. They thought he might have been aspirating due to the reflux. So with some aggressive chest physiotherapy and some high flow oxygen he stated to turn around after about 24-48 hours!
Lets fast forward to today, post op day 5! He was in a super good mood. Today has been the first day he has ever really smiled and laughed. It was a very special day for us!!! They have his oxygen weaned down to 0.1L (seriously, I know!!!) So far he only needs it when he is asleep. So I'm sure he will be needing a sleep study soon. He does have periods of apnea despite repositioning his neck or body. Also our little guy hasn't eaten very much since the end of October so we are working if feed through a bottle. He has take 10ml for a lot of his feeds today the rest of his milk is gavaged down his NG . He can eat just needs the practice to relearn the task. So time will tell...
So just after 5 days we have started to notice some awesome improvements with Ethan!! It's nice to see a pink face!! I certainly do not miss the purple, dusky mottled Ethan. Oxygen levels are 100% as opposed to 80-88% on oxygen 0.1L around the clock, he's awake and takes regular naps as opposed to sleeping 95% of the day, he is starting to eat a little more by mouth, he doesn't sweat and get cool/clammy just to breathe!!!
Plan is to be discharged this week!!! He will get a video swallow eval prior to discharge to make sure he isn't aspirating and to see if maybe he will do better on thickened liquids. We will also meet with general surgery in a couple weeks to determine when they will fix the Intestinal Malrotation and place the gtube. Sure I would be great to not have to deal with the gtube but I know it's in his best interest. It will free up his face!!! Plus I'm sure the back of his nose/throat is just raw.
Please enjoy our pictures! We are so blessed!! We couldn't have asked for a better post op recovery. Thank you for all of your love, thoughts, and prayers for Ethan!