The Other Half of Yesterday

It was just a few hours that we waited.  I think in all we said goodbye at 7:30am and we saw her again at 10:30am.  The doc came out to the waiting room and told us things went well.  He ended up doing a double osteotomy which means that he cut her tibia (shin bone) twice in order to straighten it.  He also lengthened 3 different tendons in the back of her leg in order to get her foot into the right position. I noticed as he was talking he was holding a camera...(you know where this is gonna go right?)  I never have really mentioned in previous blog posts that body fluids/being the nurse type is not my best area; but let me tell you now, it's not.  Like, really not a strong suit of mine.  Just the sight of someone in scrubs make me queasy because it means that medical stuff isn't too far away.  He explained that she had a fibrous tendon where her fibula should have been (some kids with FH do have this, it's common) sort of like her body was trying to make a fibula in utero but it never calcified and the muscle didn't adhere to it.  Hers was so large though he had to remove it.  Please note these are all my unofficial terms and remember he's holding a camera and I'm wondering when it's going to enter into the conversation so my memory of his exact medical terms aren't super clear.  So then he said, "do you want to see the tendon?" (glances at my face) "Oh maybe you don't.. Well I can show you the incisions?"  Then as fast as he can he's scrolling through pictures.. His point was really to show us where she had been cut and then for "fun" to show us the fiberous strand he removed.  We will never see the incisions because she has now a soft cast on and tomorrow will get a plaster cast on until we come back in 30 days.  It wasn't really that bad I guess to see the pictures and as the parent I should know I suppose.

The doctor finished the conversation by explaining that because he did a double osteotomy she now has two pins in her tibia to fixate (hold in place) the fractured areas.  Those pins though are not totally buried inside of her (like I thought they would be) they come out of her foot and when we return she will have them removed.  I wasn't expecting that.  He said that if the pins were internal one day they would have to have a full surgery to remove them but if he left them extruding we could just remove them when we return.  Lovely. He said she wouldn't be in any pain because it's kind of like a hole for an earring.  Ladies have them and they don't feel anything once the initial tenderness is over.  Just before he left us he mentioned in closing that "she's been cut a lot and so she will be uncomfortable" but she was given an epidural that should be in for 3 days to keep her comfortable. Uncomfortable I've learned quickly is a soft word for PAIN.

Off we went to see her in recovery.  She actually held her hand up to her daddy.  She loves him so much and so far he's the one who can rock her to sleep the best.  The rest of the afternoon was spent watching her sleep, rocking, a visit from a therapy dog, a parents tour of all of the hospital amenities, us chatting with friends who came to visit and distract us and so on.  It was nice. However, eventually the evening arrived and at about 9pm she was starting to actively get fussy.  She just needed to sleep, but who could blame her for being so miserable. I'm pretty sure she had a least 6 tubes/wires coming out of or hanging from her body. She kind of did these freak out things where she would waive her hands in the air and scream.  They gave her Valium for muscle spasms but Valium stings in the IV so she freaked out even more.  There was just no consoling her.  They tried Benadryl and Tylenol to just put her to sleep but she just kept fighting and fighting.  It was hard.  Really hard.  I think watching your child be in pain has to rank up there with some of the worst things to experience.  At the worst point I was sobbing holding her when she was screaming, Joey was trying to help, the nurse is looking up what other meds to give her and asking me if I was ok....ick.  It was hard.  Eventually she fell asleep with Joey.  Thank you God for sleep that rests and restores our bodies.  Joey went to the hotel and I stayed and she got to sleep until about 4am when she awoke and the fussing began to escalate again.  During that episode (which lasted about 2 hours) I was just done and said "we need to just knock her out or something" so out came the Morphine.  It does a body in pain well.  But the flip side is she's just so medicated or drugged I just feel horrible for that too.  There just isn't any winning at the moment.

So here we are today.  This morning they decided to remove her epidural.  The sight was getting pink and the talk of possible infection was looming.  Out it came and today we will work through weaning off the epidural meds and onto oral/iv meds.  They can experience some break through pain during this process but so far she has been sleeping.  Well actually now as I'm typing this she's waking up on Joey's lap...we'll see how today goes.

Remember that river of uncertainty I talked about in an earlier post?  In the words of Dory, from Finding Nemo..."just keep swimming, just keep swimming".   Just please pray for us as we swim.