Post Op follow up

Dang it I forgot my camera! I do NOT do these early morning appointments. Anywho Severin checks out great! Xray, EKG, Blood Pressure, O2 sats 83-89 on room air, weight back up to 12.0 kg (26.45 lbs) They said he gets to kick the oxygen habit during the day, and take it down to a 1/2 liter at night. Weeeelllll.... that is what they say in every post op appointment. So I took Sev off the o's until we came home by about 5:00 his lips and finger tips were purple. Sorry I have seen my boy VERY pink for almost 2 weeks I was not about to let that go. For now I will wean down the O2, not be so freaky about him keeping it on 24/7, and let him keep healing at his own pace.
After clinic we met up with our Heart Buddy Jessica. She has HRHS like Sev and is 22 years old- same heart! She gives me a great hope and perspective of Severin's future. I am so thankful for medical advances, all she had to endure 20 years ago, made procedures easier for my guy today.
I have been thinking about something today.  I recently found out one of our CICU neighbors earned his wings and returned to Heaven. There is no rhyme or reason to which kid gets to stay and which one has to go. I sometimes even feel guilty that I get to see my son grow and others do not. This heart community is very unique population. We see many little ones leave too soon. We grieve with each other. We stand by each other for the entire journey. We celebrate little milestones, and remember "angel days". I know there is absolutely no scientific/medical reason Severin is still here. But yet he is. Not only here, but thriving here. I allow myself to dream of his future.  I know he will be here until he has fulfilled the measure of His creation. I hope his measure is longer then mine. He has great things to do on this earth. I, as his mom will make sure he has every opportunity to accomplish what he needs to do. I can only accredit faith, and prayers for sustaining our son and our family. One thing "Heartland" has taught me is perspective.

First day home

Severin took a 5 hour nap. I was really nervous and checked him constantly. When he woke up the kids were outside playing, it was such a beautiful day. He wanted to go out too. So I drug out the concentrator out on the back porch, and had his 100 ft oxygen tubing on. And away he went! He made it to the swing set, then to the road on his bike.

 

Thanks for the 100 ft of tubing! We even had JP and Soph over

He only got tangled up ONCE

Bath time!

He is holding his O2 on.

On Sunday Sevie got his sponge bath, hair do, lotion, and pjs on

 

oh yes he did!

FIVE DAYS!

 

5

Five Days ago I woke up after very little sleep, snuggled my boy and started the dreaded drive.
Five days ago I handed my sweet baby into the capable hands of two of the most brilliant men I know, and asked them to bring him back to me.
FIVE DAYS ago we sat for 5 hours waiting for surgical updates.
five days ago our sons heart was being "replumbed" in hopes of giving him a long life.

FiVe DaYs later our son is home!

Post Op Day 4

CHEESE!

Little Mister is not giving me much down time. He is pretty spunky. We are waiting for his echo. It was scheduled for 10:30 and then 1 and seems how it is 1:40 I just hope it is sometime today. If all looks good it will be our golden ticket outta here! Severin is eating, drinking, pooping and peeing. I'm wondering if they are keeping us here because he is so cute and entertaining. He loves the playroom and wagon rides to see the fish and train.We have to ride the train elevator to see the train. We have trains in the room. Medication wise he is on tylenol and motrin for pain. When he hurts he is grumpy and says weird places like his eye or armpit hurts-never his chest. He takes lasix twice a day. He hates it. It tastes gross even with flavoring. The first try the Nurse didn't flavor it and he barfed it before it even hit his tummy. He is on 1-1.5 liters of Oxygen, he came in on 1 so this is really no big deal. And he now takes a whole 81 mg Asprin instead of a half. The echo will tell us if he needs any heart meds. So we wait....

Blogger is being difficult, and not letting me post pictures

**PICTURES**ADDED**

Sunday update:

After Severin didn't have his chest tubes anymore I gave him a sponge bath and got him dressed into his Helicopter/Firetruck pjs. Then we went for a wagon ride to see the train downstairs, and the fish.

 I asked him if he wanted to go to the playroom-"no" but I took him into see anyway. As soon as he saw ALL.THOSE. TOYS. He was trying to get himself out of the wagon-danger! I helped him out, he was really weak and needed help to stand. After a while he could walk-a little tipsey, but the reward of getting to as many toys as possible kept him going. After falling down a few times he decided it was ok to sit and let me bring the toys to him. I can't even imagine the pain of falling on your bum with a healing chest. OUCH! He said he was hungry, which usually means he is thirsty. We went back to his room and I gave him a drink. He said he was hungry still. What? could he really be HUNGRY? So I ordered him a little bit of everything from room service menu. He was so excited to see chicken nuggets. He ate so good! It was like someone flipped a switch and Sevie came back.
The kids came to see him, it was a bit much for him, but he misses them. We have taken many wagon rides all around. He is able to sit up better on his own. He doesn't hurt as much to move him. We still snuggle lots- in fact that is what he wants me to do now, so this is going to be cut short. He is a stinker and takes off his oxygen. Then when he desats enough and the "dings" go off he will put it back on. He is just trying to have some independence in his situation.

Post op day 3

what's not to love about this little sleeping bunny?

hand twirling his hair, heart hugs hand touching his head so he knows it is there, bug close by so he can push it's button.

The Team just came past, Bonnie will pull the last 2 chest tubes today. Labs, xray and chest tube drainage all look dry. No more narcotics today and hopefully that will help with the barfies. Did I mention he has figured out the buttons on the bed? Oh yes we "ride" up and down all day long. I get a little motion sick riding shot gun. He has lost weight, which is super common, but let just hope for some calorie consumption today!