Last week I shared that we needed prayers for Deuce, because we were meeting with his surgeons. Since then, I have received a ton of DM’s, messages and emails asking for an update. It’s been really hard to even write up an update because I feel like we are in a season of life that just sucks. When I started my blog, the goal was to uplift and inspire mothers– but lately, I’ve been so discouraged that it’s been hard to share what’s on my heart. Mostly because I don’t want people to come to my blog, read a few posts, then leave feeling depressed – that would never be my intention or goal, but I’m in a season of life where sharing my heart means sharing the sad and crappy stuff, too. I mean, Deuce has been sick for like 3 months on/off, my husband got hit by a car on his way to work and his car got totaled, I miscarried baby #4, Harlym was in the hospital for a weird infection and now Deuce is having another surgery. (2018, can you PLEASE be cooler than 2017?!) All of this to say, I want to keep sharing, even when it’s hard, because that’s life. It’s good and hard and messy and amazing and sometimes, it sucks.
So here we go with an update on Deuce…
In May of this year, I wrote a post titled “Here We Go Again” and went into detail about Deuce’s condition (craniosynostosis) and regression. When I wrote it, his surgeons were talking about doing surgery in the summer. But ultimately, they decided to wait 5 months. In those 5 months, the goal was to track his head growth (how it’s growing, why it’s growing in the wrong directions, proportions, etc) and take monthly photos tracking growth. Basically, his surgeons didn’t want to rush into surgery and wanted to give his head a chance to hopefully correct itself. Well, in these 5 months, every single day my husband and I noticed abnormalities in his head, growing lumps and ridges and I became very concerned. During one of his pediatric check-ups, I mentioned all of my concerns to the doctor and he was equally concerned. He ordered a head CT which showed that the back of Deuce’s skull looked worse than it did before his first surgery. Just completely regressed.
So last week, we met with his plastic surgeon and neurosurgeon again and brought the CT scan photos for them to review. They decided that the best course of action will be to remove the back of Deuce’s skull. Yes, you read that right. They also said they want to do the surgery before the year is over (we are still waiting to hear an exact date). When the plastic surgeon was answering our many questions, she said that she’s done 268 surgeries like his first surgery. And she’s only ever had to re-do two children’s heads. Deuce will be the third. They don’t understand why this happens. His first surgery and helmet therapy were supposed to fix his skull, giving his brain room to grow. And they aren’t supposed to have any more surgeries. Because of that, they will be studying Deuce and his head growth until he’s 16 years old.
His first surgery was done endoscopically through two incisions, one on the back of his head and one on the top. He did need a blood transfusion and spent one night in the PICU and one night in a normal room. His next surgery will be much more invasive and it will take longer for him to recover. They told us he will likely need more than one blood transfusion and will spend 3-5 days in the hospital, depending on how he does. And he will have a zig-zag incision from ear to ear.
Basically right now we are just waiting to hear from the hospital for a surgery date. We would love and appreciate prayers for our sweet boy through this whole process! Thank you all from the bottom of my heart.
Deuce’s raglan c/o Anson + Me