Cranio Deuce

Deuce’s Cranial Vault Reconstruction Surgery

March 13, 2018

On January 29th, Deuce had his second surgery for craniosynostosis. When he was 3 months old, he had an endoscopic surgery to correct his condition, but unfortunately last year we learned that the surgery (and the 8 months of helmet therapy following it) were unsuccessful. It was pretty devastating to learn that he would need a second surgery and that this surgery would be much more invasive than the first. His first surgery left him with two small scars, one on the top of his head and one on the back. Both about 1.5 inches long. This second surgery would be an open cranial vault reconstruction (CVR), and the surgeons (one plastic surgeon and one neurosurgeon) would open his head from ear to ear. Ultimately, leaving him with a huge zig-zag scar across his head. It would mean a much longer recovery and a longer stay in the hospital.

SURGERY DAY

Deuce is super attached to my husband and I, and we knew that sending him back to the OR by himself would be traumatic for him. So the doctor gave him a sedative beforehand and we waited in a room for about an hour before they took him back. When my husband and I went out to the waiting room, our entire families were waiting for us. They kept us occupied during his surgery and the OR nurse called me every hour to give us an update. The surgery lasted about 5.5 hours and afterward, the surgeons came out to let us know how it went. They said that during the surgery he lost a lot of blood and needed two blood transfusions, but that that’s completely normal for this type of surgery. And then they let us know that the surgery was successful!

It was another hour or two before we were able to see him. They had to transfer him to the pediatric ICU and make sure he was stable and situated before they could let us back there with him. That hour or so felt like the longest of all. I hated that he was somewhere in a room without my husband and I… and I just wanted to be near him.

When they took us back, it was extremely difficult to get used to the way Deuce looked. The incision was much larger and thicker than I had imagined and he was sobbing and in so much pain. He also had 4 different IV’s. The nurses warned us that the next 48 hours would be really hard for him and for us.

Throughout the day and night, they kept him sedated because every time he started to wake up, he would scream bloody murder. He wanted nothing to do with the crib, so my husband and I took turns holding him. It was so incredibly painful for my husband and I to sit there and not be able to do anything – besides hold him.

DAY 2

The next day, the swelling started to come quickly. He opened his eyes for a few minutes, but after the swelling really came in hard, he couldn’t open them anymore.

The nurses told us that we need to try and get him to eat and drink, but he wanted no part of that.

DAY 3

By Day 3, he was completely swollen and looked like a different person. And at this point, my husband and I were so tired that we couldn’t think straight. Like I said, he wanted nothing to do with the crib, so we were holding him 24/7. Taking turns to nap, go to the bathroom, etc.

BUT we did get to break out of the ICU and we were sent to a regular room! And they took all of his IV’s out, but one.

That night took a turn for the worst. I noticed Deuce’s foot (where his last IV was) was purple and cold and called the nurse in. The IV wasn’t working anymore and his foot was swollen. They tried to put it back in and find another spot, but they couldn’t. He didn’t have any viable veins because he hadn’t had any food/water/anything in over 72 hours. So they had to call the IV team in, bring in an ultrasound machine, and we had to hold him down on the bed until they could find a vein with the machine. He was already in so much pain and this just exasperated him. He screamed and bawled his eyes out, and my husband and I cried along with him. It took over an hour for them to find a vein and put the IV in. Afterwards, I went to the bathroom and cried for a good 20 minutes. That was probably the hardest night of all.

DAY 4

Day 4 was probably the biggest day for Deuce, he completely turned the corner by the afternoon. He started waking up more and more, and even opened one eye partially!

I was eating chow mein from the cafeteria for lunch and Deuce could hear me eating, he said “papa” (what he calls food), so I gave him my plate and he started scarfing down the noodles! He ate almost my entire plate and then drank a ton of water after. We were SO proud and crying happy tears because our hungry boy was back.

By nighttime, he was wanting to sit up and play for a little bit… so we took him on a car ride through the hallways! He even tried to take a few steps by himself (with our help).

DAY 5

And on day 5, we got to go home!! It took a while (mid-afternoon) and they wanted to make sure he was really okay to go before releasing us. We were sooo happy to break out of the hospital and take him home.

A FEW DAYS AFTER SURGERY

As soon as we got home, he started healing like crazy and acting like his normal self. It was so good to be able to sleep in our own beds and not be woken up by nurses every hour.

6 WEEKS AFTER SURGERY

His scar is healing SO well and his head shape looks amazing. He’s just as crazy and wild as ever. We are so proud of how far he’s come. The only thing that was really hard was 2 weeks post-op when he got his staples removed.

Now his scar looks amazing and his hair has started to grow over it!

We are SO glad that this part of Deuce’s journey is over. Thank you to everyone who prayed for him while he was in the hospital! It was so amazing to see how much support our little guy had. <3

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