Wednesday, October 24, 2012

How do you shake fear?

Lately I've been doing a lot of worrying about Princess Bear (PB).   She was born with something called bicoronal craniosynostosis.  You can read a very good article about it HERE

She has a couple of really big Dr's appointments coming up and they can both be life changers in their own ways.  We go to St. Louis is November to meet with the endocrinology team.  PB hasn't seen an endo since hers moved 3 years ago.  The team in St. Louis has been consulting regularly with her pediatrician since the thyroid problem has appeared between the last visit and now.  We'd been trying to get in to see the Dr and St. Louis kept on telling us that things seemed fine and to repeat the blood tests every 3 months.  Um, ok that addresses the thyroid issue but not the other problems.  Like the fact that my 9 year old is 5', 92 pounds and wears a women's size 7 shoe.  Last month I received a letter from the endo team in St. Louis telling us when we had an appointment.  It was a shock since they hadn't seemed too concerned with seeing her.  At her last bone age scan she was 1.5 years ahead of her chronological age.  I'm sure that she will be poked, prodded and it will be a long day of many tests.  Whether we'll have more answers about her accelerated growth remains to be seen.  Whether we'll have any answers about her crashing thyroid also remains to be seen.  I understand that Dr's are very worried about projecting things because we live in a sue happy world but I would really like some idea of what to expect for my child.  Forewarned is forearmed, right?  She's getting old enough that she is starting to ask questions.  Some answers would be really helpful. 

The next appointment is in December in Chicago with the Craniofacial team.  I have this nagging feeling that is getting worse by the day that the decision will be made for PB to have her next surgery soon.  The Dr. said he'd like to wait until summer whenever he has determined that she has grown enough and that new adjustments need to be made to her skull.  I like that in the weather is nicer in summer for traveling, there is generally less illness and ick running amok in the summertime.  I don't like it in the fact that all new residents start in June.  Really never, ever, ever do elective anything in June or July.  I've known seen we first took PB to the plastic surgeon at 2.5 weeks old that she was going to have at least 3 major surgeries.  Her first surgery was at 7.5 months old and she literally had her skull opened from ear to ear.  At that time they did a CVR, cranial vault reconstruction, and a FOA, frontal orbital advancement.  The surgery was long, over 7 hours and there were complications in that her dural lining was torn and the first graph failed.  I will never forget when they finally let me into recovery to see her.  My childs head was swollen bigger than a pumpkin and she was very bandaged with drain tubes coming out of both sides of her head.  It would have been nice to have some warning that my child would be completely unrecognizable.  The first 3 day after surgery PB could not be picked up.  The pain was too much to handle.  I even had to fight with the nurse the first day and a half to give PB the morphine that was ordered.  She just wanted to give PB Tylenol.  Hello my daughter had her head cracked open from ear to ear and completely reconstructed and you think some Tylenol will do the trick?  I seriously almost decked her.  As a result of the swelling PB's eyes were swollen shut for the first 5 days.  Her surgery was Tuesday morning and she was able to open her eyes a tiny bit on Saturday night.  As I said the first 3 days she couldn't be moved let alone held.  I spent those days laying next to her crib holding her handing and just talking to her.  Assuring her that things would get better.  On the 4th day she wanted to be held and refused to be put down. I actually had to take her along with her monitors and IV to the bathroom with I pulled that off without anything getting disconnected I don't know! 

PB was a baby and has absolutely no recollection of that surgery.  She's aware that she had surgery but hasn't asked too much.  I think this one will be hard because she has seen her friends go through surgeries.  She knows it's painful.  I won't lie to my child and tell her it's going to be fine.  It isn't going to be fine for awhile at the very least.  She's going to be in pain unlike anything she remembers.  She won't be able to see for several days due to swelling again.  The only thing I'm dreading more is any major surgeries after this since she will remember.  I'm just so scared that since she's done so much growing the Dr is going to decide the time is now.  There is very little worse than handing your child off to a surgical team for them to operate on her skull.  Logically I know that the surgery has to happen and she'll be better off in the long run.  Logic has very little to do with anything when your child is having surgery.  So at the moment I have this feeling that Dr. Patel will look at PB and say that this is the time.  You can spend all kinds of time preparing for something and never be ready for it.  This is obviously one of those things.  I'm trying to not let my anxiety show because there's no point in upsetting PB but I feel like I'm at the edge of a cliff and ready to fall off.  There is no amount of meditation and stress relief that is going to make this any better.  SO, this is my state of mind now.  Damn I wish I had a drink. 

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