Severan turns 1 year old next Tuesday, the 13th! I can't believe it. Fastest year of my life and certainly one of the most emotional years. Sev's surgery was in June, his helmet went on in August and the recent development is not good news.
Part of what the surgeons did when they went in to fix Sev's skull was re-attach the the bone with metal (dissolvable) plates. When Sev went into his molding helmet we quickly discovered that any area of his head that was raised slightly would rub on the helmet and cause irritation and we would trek down to the Children's Hospital to have them shave out part of the helmet so it wouldn't rub him raw anymore. One area where he had multiple "hot spots" was where he had these metal plates underneath the skin. The plates served their purpose for about 2 months post-op and that's it. Now they are just there, causing a slight bump under the skin which in turn causes irritation as his helmet rubs on it. So, December 14th I took him out of his helmet and put a call in to have it shaved out again. During the time he was out of his helmet he had two trauma incidents to that very spot on his head. Long story short: that trauma caused inflammation and that inflammation caused a lot of problems around those metal plates, under the skin.
The two red spots are the two ends of the metal plate. This is today. Over 4 weeks after the trauma occurred.
Here we are today at the Children's Hospital getting the bumps checked out.
See the bumps on the left side?
This post was getting so serious, I had to throw this in there.
This was the area in December after the trauma.
So what happened today when we saw his team at Children's Hospital?
Well, the doctors graduated Severan from his helmet!!!!
Awesome to be out of it, permanently, but it is premature. Keeping him in the helmet runs too many risks with those spots being so vulnerable to pain and rubbing.
The spots are inflamed badly and they were honest with me today. The plastic surgeon said that she's only seen one case of this and Sev's neurosurgeon has never seen this. The metal plates are going to eventually dissolve. In "18 months" eventually... What is actually happening is erosion from the inside. The trauma caused inflammation at the site and the body and the metal plates are now not getting along. There is fluid on each site and it's painful for him.
Options:
1. Wait it out and pray the body takes care of the inflammation. This process could take up to 7 months. As long as it stays the same and doesn't get worse, they're comfortable just watching it.
2. If it worsens (they open, ooze, etc) then he will be put on antibiotic immediately and he will have another surgery where they would go in and remove the plate. Not good. Not good at all.
The skin is very thin in these areas as it is. The plates and the inflammation are causing an unbelievable amount of pressure on his thin facial skin, so having the helmet off is a good thing but sleeping on it (and consequently rubbing it on his bed) are concerns of mine. And once (if) they open up, there is no option but surgery.
We are disappointed and hurting for him but he's a real champ. He continues to be happy, content, loving, and on track developmentally. Speaking of, he is walking, but prefers to crawl, he loves to snuggle, sing, play the drums and says a handful of words: Dadda, dis (this), dat (that), Mama, and Baba. He's playful and fun and in case you were wondering if he's sleeping yet - he's not! That's my only complaint... But he's too cute to get mad at:)
It's been a long road with this one but he's an amazing little boy and God was gracious and merciful to give him to us.
We hope you all had a wonderful Christmas and a Happy New Year. The rest of us are happy and healthy as well and we are looking forward to 2015.
Oh Jessica! I had no idea. Continued prayers coming your way.
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