Post op day #6

What an awesome night! Although little man didn't go to sleep until after 11pm, he slept until about 8am. Woke up once a little uncomfortable and was given some Tylenol. Then he decided to play, smile, and laugh for a little bit. He woke up at 8am coughing, gagging, arching his back- the cardiology fellow was in here. FINALLY, someone to see what he's doing when he's refluxing, which she said was classic. So he's already on Prilosec they're adding Zantac so I HOPE this helps him.

They have turned off his oxygen, its been off for 2 hours :) They have left the tubing on him just in case they need to turn it in when he is sleeping... But he's been asleep now for 25 minutes and holding those numbers up there!!! Time will tell but this is AWESOME. In the past he would start dropping his oxygen saturations fast and have periods of apnea.

Momma is taking a break this afternoon and going home to see Eli. I miss him like crazy ❤❤❤❤❤❤❤❤❤❤❤

Well hopefully we have the video swallow study early in the week and we can get the heck out of here!!!! Whahoooo

Post Op Updates and Pictures

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!

OHS update

Ethan is sedated, on the ventilator, tubes and lines in place, just made the incision and opened his sternum. Going on bypass with in the next 10-15 minutes!!!! Then they will start the repair...

Today is THE Day!!!

Ethan will have a MENDED LITTLE HEART TODAY!!!! I can't believe this day is here already! The weeks have flown right by us since we found out! Ethan has had a rough night he has woke up screaming hysterically. It seems like his reflux is horrible so I have gotten 2-3 hours of sleep... Who needs sleep? So we have just been singing and rocking, tears will start flowing every once in awhile.

We had Ethan Baptized yesterday in the presence of our immediate family. It was very important to me to have this done before his surgery for so many reasons. Father Kessler did a very good baptism for Ethan. He said a wonderful prayer as we make this journey a little closer towards his surgery. I left the church with an overwhelming sense of calmness. I know he is in good hands. I know this is what we have been waiting for since I was 5 months pregnant.

Today is the day so please pray for us!!!

Green Light for Open Heart Surgery!!

We were all wearing our RED today to support National Congenital Heart Defect Awareness Day!! We got the phone call that all of Ethan's viral screens were NEGATIVE!!!!!! So they're are going to do his open heart surgery to repair the avsd on Monday, February 4th at 730am at Nationwide Children's Hospital in Columbus, Ohio. The surgery will take about approx 5hours from start to finish. He will recover in the CICU and spend a couple days there. Then move onto the cardiac stepdown unit! I'm anxious to see familiar faces :) This is where he spent 42 days with the Rhinovirus!

Sure there are a ton of emotions. But a majority of them are lets do this!! I'm ready to see my son thrive! He can't do anything right now because his heart will not allow it. I will not miss the profuse sweating just to breathe, fast breathing, turning purple and dropping his oxygen saturations into the 50-60's when he starts to cry, unable to lay flat for more than 5-10 minutes because he can't breathe due to the increased congestion (heart failure), unable to do tummy time for more than 20-30 seconds due to the above, not eating at all!!! Ok the feeding issues we can work with. He has not eaten since the end of October... An oz here or there. I don't believe he has developed a full food aversion because he will still take his paci and when he is truly hungry, he will eat about 15 ml from te bottle.

Not to mention Ethan requires so much care that I feel like I'm always telling Eli to hold on I've got to do this or that with Ethan. I have one goal for myself and that is to shower during the day at some point. I will put that on hold if it means to spend 15 min with Eli... It's nice when Matt comes home. He has really stepped up and helps with Ethan and Eli. He has learned to tube feed Ethan and suction him. He is very good at it also!

I have been pondering for quite some time on talking with Eli about all of this. Nothing in great detail. The 42 days we were in the hospital REALLY affected him. He tell me every single how happy he is that we are all home, how much he loves his baby brother, how much he misse sis..... We took advantage of this opportunity to let Eli know we would need to take Ethan back to the hospital for a little bit to get better but hopefully would not be there that long. He asked some questions and we were honest. And he was just like OK let's get him better so we can go camping!!!! If you don't know us, wee go "luxury camping" and its Eli's most favorite thing to do. Eli has had to grow up quite a bit, even more so than just adding in the big brother role. He is already so protective of Ethan. He will be an awesome protector, friend, and big brother!!

So I want Dr.G to fix my baby!!!!!!!

Thank you for the continued prayers and support through this! We love you all