January 17...the day I have had a love/hate relationship with for months now. Part of me cannot wait to get this whole process started so that we can get it done and have this whole nevus thing behind us. But, as the day has gotten closer it is getting harder and harder to not be emotional about the whole thing. Just this morning Kelly said to me "I'm not really nervous about it" and I agree that I am not nervous. I know he is in very capable hands in a top notch hospital. More than anything I am getting very emotional that I only have 3 more days to see him like this. In 3 days we will start a process that will permanently change how he looks. Eventually his hair line, eyebrows, and even hair color will all be different than it is now. As of today he doesn't have a single scar on his body but we are about to put them all over his head and face. I feel very, very sad about this and really wish it wasn't this way. I wish he had never been born with this damn nevus. But, it was the hand we were dealt and Kelly and I feel strongly that this is the best decision medically and cosmetically for him. We know these procedures will be much easier for him as a baby and in the long run he will be grateful that we made this decision. Even with all my emotions flooding me right now, I know this is the right decision.
So, onto the details. Charlie will be admitted to UCSF Children's Hospital this Friday, January 17 at 5:30am. He is scheduled to go back for surgery at 7:30am. He will have two tissue expanders that will be placed in his head, one on his forehead and one toward the back of his head, both on the non-nevus side. We are told the surgery should be about 2 hours. Once he wakes up from the anesthesia we should only have to stay about two hours assuming everything goes well. So we may be home by the afternoon if we are lucky. I will be keeping this blog and my Facebook page updated with lots of check-ins throughout the day so please look either place if you want to see how things are going.
I've heard that this surgery is the harder of the two in each round because they have to make a little pocket to insert the tissue expander and so there is some seperation if skin, muscle and bone so this surgery is more painful for them. I have also heard that most kids bounce back within a few days. We have family coming to stay and help with Lily and we hope to just help Charlie in any way be comfortable and happy. Kelly will taking some time off of work to be here as well so I think we will be pretty set. A lot of you have offered to help in any way and I will definitely reach out if needed.
I'm still a little unclear what the process will be after surgery. I believe that Dr. Hoffman likes to wait 3-4 weeks for the incisions to heal before starting to fill them but I've heard that some doctors start one week later. Either way we have 12 weeks of fills in our future where we will drive to UCSF and Dr. Hoffman will slowly fill the issue expanders with saline. We are anticipating our removal surgery for sometime in mid-May.
So please think of Charlie on Friday morning and send him all your best thoughts. We appreciate it and I'll keep you updated as things happen.
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