1 Month after OHS!

Sorry for the lack of update via my blog! It's just so much easier to update on Team Ethan's FB page ;) I have tried to update on here since we have been home from the app and the apps keep eating my very lengthy post, so frustrating!!

We came home exactly 7 days after surgery. Ethan is doing extremely well!! His incision looks wonderful, its nothing like I had imagined. He has lots of energy. He plays, does tummy time, sits in the bumbo, plays with Eli, rolls back and forth and onto his tummy! The first week home I would constantly watch our video monitor, actually picking it up wondering if he was even breathing. He is actually taking nice smooth shallow breaths. He's hooked up to an pulse oxygen sensor, so I would know if he got into trouble. He actually takes naps instead of sleeping the day away. He is sleeping longer at night. He is still on oxygen when he sleeps, mostly at night for me and car rides. Everything is is just all around SO MUCH BETTER!!!

Feedings are an issue but we will work on those! He had a video swallow study this past Friday and did confirm he is aspirating thin liquids which was no surprise honestly. He has reflux so bad and does a lot of coughing trying to eat. When I say he isn't eating, I seriously mean he does not eat much, 0-5ml thats a TEASPOON folks! When he would seem hungry he would take a few sucks and then be done with the bottle, like he was scared or panicked. We started spoon feeding him oatmeal. He did extremely well with the thickened consistency. Which the swallow study showed he did well with nectar to honey thickened liquids. We tried oatmeal first because he is so constipated all of the time. He did well for the first few days then well we tried adding it to the bottle it may have just been a little much because then he broke out into a TERRIBLE hives/rash!!

So we are onto rice cereal. Sometimes he will eat but mostly he just plays with a few swallows. I feel he has a complete aversion to anything with a nipple :( He gets so upset. I have offered a sippy but he doesn't take much from it either. I'm just anxious to start therapy with him. . We are getting no where with the feedings and he's almost 7 months old!! ***UPDATE*** We saw OT in our town (everyone wanted us to go to Children's- this is an hr drive, not to mention an hr to get him ready for the drive), after much investigation I found out there is an OT/PT who work with infants and children. The OT is a feeding therapist. She comes with lots of experience with Down syndrome children. I just asked our pediatrician if we could please try the therapies locally and if it wasn't working then I would go to Children's. After our 1st visit this week with OT, I knew Ethan would be well taken care of. We felt so welcomed. She said Ethan has all the motor/sensory skills to eat, just finding the right nipple and retraining him! That was great news!!

As far as his belly surgery, we saw the surgeon about 2 weeks ago. He wanted to do his surgery on May 8th only because he would be out of town for a month. Ethan is not released until after March 18th by cardiology. After some time thinking things over the weekend. I called back in and requested to be seen by another surgeon. No big deal, we see them on March 21st. I pray he gets this all taken care of soon after that appt! His face is a mess from the tape. He started out with a yeast like infection on his right cheek, so the tape wasn't sticking, it was bright red, itchy, painful, hot, stinky, with small white patches and bumps. I switched his NG to the other side within a few hours it started to look just like the other side. The drs office recommended OTC antifungal cream and aquaphor. I think it has to do with starting solids. We have to change the tape so frequently and I'm sure some solids leak underneath the dressing. I had to figure out something to allow his cheek to BREATHE! Leaving the NG out is not an option because he is not eating anything by mouth. So in the hospital where I work, we tape NG's with a chevron hold. Piece of tape split up the middle, large part placed on bridge of nose, split pieces spiraled own the NG to hold in place. Why didn't I think of this SOONER!? Only problem is, it's an easy target for Ethan to grab a hold of and pull right out. Our awesome momma from Sebastian's Journey met up with me to let me try these arm splints especially at night. So far everything has worked like a charm!

Also I started back to work this past week. Which is exactly what I needed!!! I have been so consumed in Ethan's care I have not done anything else. It was seriously taking a toll on me mentally ans physically....  Mimi (aka Cheryl, who is Ethan's grandma) has offered to watch Ethan for me. Ethan still requires a lot of care, there is no way I could send him to a sitter or daycare. I also could not pay someone to watch him, it will certainly defeat the purpose to trying to go back to work.... So the plan for now is working 2 days a week in the office and possibly picking up time so I can work from home. How awesome would that be !?!?! I plan to go back full time during the summer. Our awesome friend Emily, who is a teacher has agreed to watch Ethan (and Eli eventually) this summer!!! Then we will look at this fall. Maybe I could find someone to watch him just a couple days while Mimi watches hm on the other days, still a working process but I'm a planner.

 f you have questions feel free to email me. I would love to answr any questions you may have. Love you all!! XOXO

Mended Little Heart on 2/4/13!

Discharged after only 7 days after open heart surgery

(shortest admission yet!!!!)

The great escape!!

Oh how Eli has missed his little brother <3

Sure didn't come home empty handed!!

2 heart meds (lasix, enalapril, which he will not be on forever just a few months),

2 stomach meds- yes reflux is that bad!! (zantac, prilosec)

constipation med (colace) ,multivitamin, as needed ibuprofen...

yep ibuprofen/tylenol combo was all this boy required for pain control!!!

I love this tough little boy!!!!

 

Sitting up with assist, something he could never do before surgery

YUMMIES!!

Says it all

My Best Friend

2 weeks after surgery!!

Tummy time, we were given no restrictions. He could do whatever he felt comfortable doing :)

Cheese, what a ham!

Starting oatmeal cereal

The nasty reaction to oatmeal!?

Best Friends Forever

I'm going to get you now!!

Lots of prayers in our house

I was making dinner, I heard Ethan fussing. Eli said he had it taken care of. These are Eli's bears.

He's such a giver

He is so PERFECT!

Monkey buddies

Eli was begging when Ethan could take a bath with him. I kept putting it off, then I had a wonderful idea!! Worked out perfectly

4 weeks after surgery...

Look at this chunk! Can you believe it?!?

Now onto his face... Ugh poor baby!

Loving tummy time. He is getting so strong

Smiles, but OUCH!!

Ethan is never cranky, but this moby wrap has be so AWESOME! He was asleep in 10 min

CUTIE!

So I just had to do something about his face. This is how we secure adult NG's (called a chevron hold), but its a little more difficult trying to do this on a 6 mos old and have it just dangling to pull out, but it's worked and his face is looking a lot better

Sweet dreams, praying it looks much better by Monday :)

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