Yawning

Well, I obviously understated a few things on my last post.  First of all, I didn’t get an update out the next day like I had hoped.  Second, when I said we had some trials, but “nothing too horrible”, I was in denial!  I think I wrote in one of my earlier posts that Lucy had wires in her mouth that we would later need to put rubber bands on to close her mouth.  At the time I didn’t know all the details.  Apparently, they wired her jaw shut during the surgery to keep it in the correct position when they installed the artificial joint.  Shanti thinks they wired it shut before they sawed the mass of bone off to hold it in place too.  This would make sense because these wires were a tangled mess cutting into her gums and mangling her lips.  She had dead skin sloughing off all over her gums and lips.  Like I said before this had been the only thing she had been complaining about.  When she awoke from surgery one of the first things she said was “What is in my mouth, get these things out of my mouth”, followed by repeated complaints of “Get these stupid wires out of my mouth”.

 

You can see in the picture her lip entangled in the twisted wires in the front.  We could tell in the hospital that it was pretty bad but we had the resident look at them and he said “they don’t look too painful to me, we do some really painful things to kids and these don’t look too bad”.  Of course, this was after only taking a milli-second look at them.  Once we got home and she started to eat more, she started to complain more and more.  She wouldn’t eat anything that would touch her gums.  Wednesday I called the Dr. and they got us in right away.  They saw her lips were stuck in the wires and decided to pull them off the tangled mess and put wax on the wires.  The doctor told us if they were still too painful to use with the rubber bands he would just take them out.  We went home that day with Lucy feeling MUCH better.

The next morning I went to check the wax and it had slipped up off the wires and her lip was right back in the twisted mess.  I called the Dr. and told them and they said to start fasting Lucy and they would call me later when she could come in.  That was at around 10 in the morning on the third day after surgery.  I think Lucy had hit her limit.  We had quite a rough day.  Lots of screaming and fit throwing.  She proclaimed she wanted to keep the wires and eat.  I tried to remind her about all the days of complaining about the wires but all she could think about was eating.  I managed to distract her for bits of time here and there until they finally called and told us to head in to the office.

They happened to have an anesthesiologist in the office that day for another surgery so they were really trying to fit her in.  Thank God they did.  We got there and within a few minutes they were ready for her, which is good because she had started screaming in the office for food.  I carried her back and she had her arms and legs wrapped around me so tight they had to peal her off and hold her down to put the mask on her.  She went to sleep kicking and screaming. About 10 minutes later they called me back before she woke up.  In a few minutes she woke up kicking and screaming.  The poor thing was so tired that she fell asleep for awhile before she finally woke up to drink a bit before they would release us.  While she was out the Dr. also took off the rest of her bandages.  During her surgery they covered the sutures with steri-strips and a giant plastic circle that covered half her cheek and both incisions.  He said it would have taken us several days to get it off working on it after a shower or bath.  I’m sure this saved us many tears and fits.

Lucy was one thousand times better with the wires off.  That night she was laughing and smiling.  Before she would hardly move her lips or mouth and I can see why.  She is now almost back to normal, with the exception of some night terrors, swelling, sporadic crankiness, and hyper sensitivity to things not going exactly as she wants.

Now that she is feeling a better I am starting to work on her behavior.  It’s amazing what a few days of spoiling a child out of complete necessity can do.  We are doing a lot of  “try agains” and apologizing for yelling and screaming at her siblings.  You would be amazed that she can scream already.  I can’t believe it doesn’t just kill her jaw to do it.  I imagine it may make her swelling last longer though.

Today I caught her yawning for the first time since her surgery.  This was a big deal to me because before the surgery watching her yawn was one of the most painful things.  Her mouth would open that tiny bit, her jaw would stop as if it had hit a brick wall and her lips would try to do the rest of the yawn.  It always made me want to cry when I saw her yawn before.  Today she yawned and while her mouth can’t open as wide as it will after a few months of painful therapy, it opened about 14 mm and quivered.  I asked her if that felt good to yawn and she smiled and said yes.  I could tell she was proud.  It’s funny how something like a yawn can be such a big deal.  I’m doing a lot of yawning these days and I try not to take it for granted even though I’d rather not be this exhausted.

The other kids are all handling it pretty well.  Everyone is pretty exhausted.  I think the level of stress in the weeks leading up the surgery was so high we were all operating on adrenalin and now that is slowed down we are all crashing.  Miles is the one having the hardest time.  Since him and Lucy are so close in age and relationship, he is dealing with feelings of sadness over how many new toys she got.  They are both very glad to be back playing with each other though.  They play, fight, I separate them, then they ask why they can’t play together.  I guess that is just how it is.

Thanks again for all of your prayers and support.  We know the graces poured out on us through your prayers, fasting and masses offered are abundant.  We certainly could not have made it this far without them.

 

In Christ’s Peace,

Katie