I said to Mike the other night that I feel like I've missed out on the last 3 months of Samuel's life. I have missed his milestones, his little baby moments, all because I was so consumed with worry. My Cranio friend said the exact same thing to me last night. She said that for the 6 months, from her daughter's birth to surgery - it was all a blur, the fear and worry overcome you and you miss everything else. She said that she had to go on meds, she was near nervous breakdown. I can understand - I couldn't eat or sleep either. There have been several nurses say that the CVR is one of the worst things to assist with. One nurse said she rather do any surgery over a child's cranial reconstruction. One of the moms posted pictures (I'm not sure how she had them) of her child during surgery. I couldn't look. I still won't. I know what they do - that is more than enough knowledge for me.
I eagerly accept the no trig diagnosis from Calgary. But my next step is to find out for sure about the fusion. I need to know. I trust that surgery is not needed, many mild cases of cranio - no surgery is recommended, but I need to know if fusion (craniosynostosis) is there or not. Then I can put this behind me and happily take my place as a metopic ridge mom.
I carry a certain amount of guilt now. I know that I should just be happy, but I've become friends with so many mommies that don't have and won't have the free pass that we've been given. "Natey's mom" posted last night (his surgery was yesterday) that he finally was stabilized in the PICU, he was on his 3rd round of codeine and his eyes were already swollen shut. She was just on her way to go get some rest for the night. I felt like throwing up when I read her update, that was almost us. I prayed last night for her son to have a speedy recovery and her heart to stay strong. I do feel guilty.
I don't want to question it too much, but it does make me wonder why all these life lessons? Tolerance, compassion, empathy and prayer - what am I being prepared for that these lessons are reinforced within me. I don't think that I am lacking in any of those departments, and what doesn't kill you really does make you stronger. I love the empowerment of knowledge, but sheesh....there has got to be a better way.
Okay, so I'm just joining your blog and I admit I don't understand much about Sam's situation. What is the difference between having a metopic ridge, and having fusion (which is the craniosynostosis, right?) Is surgery only required if there is fusion, or is it sometimes required with a metopic ridge?
ReplyDeleteSorry if you've already answered this a hundred times!
A metopic ridge (which Sam has for sure) can show that fusion has happened or is happening earlier. Fusion between the sutures prematurely is craniosynostosis (the CT report said Sam has this in the metopic suture). Generally if fusion has happened it will affect how the head can grow - most often the child has a misshapen head. If the head is growing correctly or if it is mild cranio - surgery is often not recommended (this also could be Sam's case). Surgery is always required when the cranium takes on an abnormal shape that restricts the brain from proper development - for example if Trigonocephaly is present. This abnormal growth can also affect the eyes and ears...and behaviour.
ReplyDeleteSam has the ridge, he may have cranio (he was dx'd with it, but it may be misdiagnosed) and Calgary said that he does not have Trigon (which Regina says he does). Calgary also said that surgery is not needed (Regina also says he does). He has an excellent head shape but ridging on the metopic and saggital sutures.
I hope this clears some things up for you.
K