we did it!

This is just to say that we’re on the other side. The dreaded thing is done. Soon I will go to sleep on fresh clean sheets in my own bed with my baby tucked up next to me. As it should be.

I am so exhausted. It was a very rough five days, but that’s better than a rough whole week, which is what we were planning for. Ulysses had the best case scenario every step of the way. His recovery could not have happened more swiftly.

It was wrenching to see him so out of himself. He was completely machinated, reliant on technology and constant management to live for the better part of two days. I’m glad I prepared myself for what he’d look like post-op. I was not surprised by the large angry incision down his chest. However, the drainage tubes did catch me off guard. I knew there would be tubes, but I guess I thought they’d be out of the same cut. I wasn’t expecting sizable tubing out of three separate entry spots. That’s four cuts, three small and one large, right there. He also had his central line in his jugular (straight into his superior vena cava), a line in his femoral artery, and an iv lock in his left foot. And then there was the ng tube in his nose pulling out stomach bile, the breathing tube down his throat, and a foley catheter. He had temporary pacer wires exiting the main incision which were attached to an external pacemaker. He was extremely connected to things. We couldn’t pick him up at all for over a day. And then when we could it was tricky to manipulate around all the stuff and he seemed uncomfortable.

After several days of seeing my boy glassy eyed from sleep and morphine, his face puffy and blank, I can’t tell you how good it has been seeing his smiles again. He has been so smiley since we got home.

We hope we won’t ever have to do that again.

(maybe after some catch-up sleep I’ll write a things I learned/observed while hospital living entry)

Categories: Uncategorized | 7 Comments

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7 thoughts on “we did it!

  1. Christiane

    So so so glad you all are home!

  2. Man, that is so hard to imagine, such a small person undergoing that; still, it is truly amazing at the same time. I have never loved western medicine more, I’m really glad people have learned to do that, really, really glad. So happy you guys are back home.

  3. layne

    I hope all those smiles mean that the surgery really helped him feel better. I am so glad it is over and you are home!

  4. Sue Berger

    April, the site has eaten 2 replies so far. Will go find you elsewhere but I am so pleased and grateful!

  5. Kara

    Hi April,
    You don’t know me, but I’ve been following Ulysses’ progress through my friend, Cindi L. I just wanted to tell you that I remember the fear and pain you have been through as if it was yesterday. My 7th child had major heart surgery at 7mo old. The experience and emotion you describe is almost identical. The biggest reason I wanted to comment to you is to let you know that “this too, shall pass”… Kelly is a beautiful 20 year old young lady today. The angry red incision has faded to a thin white scar and the smaller ones are almost unrecognizable. Kelly was one of the happiest, most easy-going of children… and today, she knows how special she is and she is not afraid or shy to wear a bikini and tell people how fortunate she is to be here. She is well aware that the prayers and care of friends and family along with the skills of the doctors and the advancement of technology are what makes her life today a reality, and she is proud to bear those scars. Her life has been mostly unrestricted and she made a full and complete recovery with a perfectly healthy and normally functioning heart… both the physical heart, and the emotional one.
    I’m so happy to hear that your little guy is home and on his way to recovery, good health, and a happy life. You are welcome to contact me if you need any support from someone who has been there.
    Continued prayers for all of you… from one heart mom to another.. ❤ ❤

    • the technology that even makes such a thing -open heart surgery on an infant!- possible boggles my mind. we are very grateful. thank you for the sweet comment.

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