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
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!
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
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 :)