Next Steps

I've spend the last thirty minutes or so going through all my posts, major blast from the past, looking for a post that told you about Sarah's medical history.  I've touched on it briefly before, but I guess I've never really told the whole story.  Most of the people that read my blog know most of it, but not everyone.  I can't give you the entire story, because it's too long and too detailed and too emotional to tell it the right way.  But here is the basic rundown.

Sarah was born with a coarctation of the aorta.  That means that in one spot her aorta was like a pinched hose or an hour glass.  The blood was pumping but it couldn't get through.  Usually this is found on an ultrasound and is fixed within days of the baby being born.  They just go it, cut out the pinched piece, and then sew the two pieces of aorta back together.  End of story, long happy normal life.  Unfortunately for Sarah her coaractation wasn't discovered until she was 10 days old.  That is a long time for blood to not be pumping to all the parts of the body.

When they determined the problem she was rushed into emergency surgery.  Suffice it to say if we hadn't taken her to the emergency room that day she would have died very soon after.  Many things fell into place the day of her surgery and for that we are eternally grateful.  Her surgeon and cardiologist are amazing as well as the teams of doctors and nurses that worked on her.  Because babies are incredibly resilient she was able to come home with us after only a week in the hospital and she had a fabulous recovery.

Except for her legs.  Fortunately, the coaraction was low enough that that was no permanent damage to her brain or upper body.  The lower half was not quite as lucky.  Apparently, and nobody really knows this for sure, the lack of blood to the bottom half of her body caused damage to her spinal cord.  We don't know exactly what happened, because it is a 1 in 20,000,000 kind of thing and really has no name associated to it, but there was damage to the nerves and muscles in her legs from the waist down.

We saw a neurologist who didn't really know what the problem was but told us she would never walk again.  He recommended we get her into physical therapy as soon as possible.  That is when we met Kelley, Sarah's wonderful therapist who has done amazing things with her, such as teach her to walk.  She is not the same as other five-year-olds when it comes to gross motor skills, but she does pretty well and continues to do better and better.

About a year ago, at the beginning of school, she started having a lot of bathroom accidents.  We didn't know where this was coming from or why she was having them.  Was it because she was four and they do that, or was it some medical problem that we weren't thinking of?  After a month or two we went to an urologist.  He gave us a few things to try but ultimately sent us to a neurologist (our old one had discharged us when Sarah started walking and was also no longer practicing so we didn't currently have a neurologist).   Suffice it to say I hated him.  Neurologists are famous for having horrible bedside manners and this guy was no exception.

Luckily a friend of mine knew of a fabulous neurosurgeon (the polar opposite of the other one we saw) and we were able to see him.  He came to the conclusion that Sarah needs surgery.  He believes she has a tethered cord.  We are hoping after the surgery we will see some improvements but that remains to be seen.  Her surgery is on the 18th.  She will have two days of recovery in the hospital and then can't walk for a week after she comes home.  Keeping a five year old down for a week, that will be a challenge.  Luckily my parents are coming for part of it and Charlie's mom is coming for another part, so she will have lots of people to keep her occupied.  I have also bought a few new art projects to work on that will hopefully keep her busy.

Yes, I'm scared.  I'm not scared about the decision to have surgery, I fully believe that it's the right decision and I'm very comfortable with it, but any time your child goes into surgery there is a fear factor.  She's so little and delicate.  However, more than anything, I'm just glad we're moving forward.  Charlie and I have always thought surgery would be an option.  Not this particular surgery, but some kind of surgery that may be able to fix some of her issues and bring her closer to the abilities of her peers.  This surgery may do absolutely nothing for her, but it could also solve all the bathroom problems she's been having, make her legs stronger and fix issues we thought would never go away.

We aren't banking on anything.  We are trying not to get our hopes up.  But we are heading in the direction that we've been wanting to go for a long time.  No longer waiting to see when we are going to do something, but actually doing something.  Hopefully it will all go smoothly and we can continue on this path.