Wednesday, July 30, 2014

Good News about Rory's Anesthesia!

Pin It A while ago my uncle had to have surgery.  After the surgery, he had some issues due to the anesthesia.  My mother informed me that these issues occurred because he is a carrier of pseudocholinesterase deficiency; or in normal people language: his body is slow to break down the anesthesia, especially drugs that are used with breathing tubes.  Pseudocholinesterase deficiency is genetic; however; neither myself or my husband have had surgeries so we didn’t know if we were carriers or not.

Rory has had 5 surgeries, and after each surgery she has had some “spasms.”  I am unsure what the medical term is for the spasms; but I have talked to other parents whose children have had the same surgeries Rory has had, and have had similar reactions.  The spasms are completely horrible; at first I thought she was having a seizure.  They are short, only lasting a minuet or so.  When these occur, Rory is awake and will uncontrollably shake, her eyes get very glossy and sometimes will roll back.  The last surgery she had we waited a few days post-op to go home.  She ended up having one of the “spasms” in the plane....It was one of the scariest times of my life.  

In order to see if Rory is a carrier we had to get blood work done.  Not sure how many kids are a fan of blood work.... it hurts and with Rory it is always a fight.  We had the blood work taken the other day.  Luckily, our neighbor that Rory knows was able to take it from her; which helped, but she still screamed and cried.  I hated having to get it done, but I had to know before her next surgery if she was a carrier or not, and if this could be why she gets such bad spasms.  

She did get to play on my phone while she was there and after she had a ring pop....It made everything a little bit better.

We got news today that she wasn’t a carrier!  

I couldn’t be happier!  My poor girl has gone through so much she doesn’t need one more thing to worry about (or maybe I don’t need another thing to worry about ;).  I hope her “spasms” are just a thing that children have when they are young and have anasthesia.  Hopefully, she will grow out of them.  I guess we will find out soon. 

Thursday, July 24, 2014

Its coming....Rory's 6th surgery

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It is that time again. Rory's sixth surgery is rapidly approaching. We had about a month before we have to go back down to Florida and visit Dr. Paley. 

Luckily, his procedure should be a relatively simple one… (I guess as simple as operating on your three-year-old can be....however; I don't have my hopes up too high because I know how our last luck with surgeries and surgery recovery have been). Dr. Paley will be removing all the hardware from her leg that he put in last September. He may or may not remove the screw from her hip , it depends on how her xrays look when we get down there.

We have been a little bit delayed on our limb lengthening journey. At this time, we should have had one lengthening done already.  After her super hip and super knee surgery her leg did not straighten and she had to have hardware put in her knee.  I was a little doubtful on whether the hardware would actually straighten her knee to full extension where it was post-op, but now her leg bends and straightens wonderfully and I will never doubt it again!

Im very hopeful that we will have a simple and quick procedure with Dr. Paley.  Then we will wait a few months for her to heal and then Rory will have her first lengthening procedure where she will have an external fixator put on her leg and get 8 cm of new bone.

After these next two surgeries (and her extensive time in her external fixator), we should have a few years where we do not have to have any surgeries for a while (I'm aware stuff will pop up, but hopefully just small outpatient surgical procedures). So, I am welcoming the next two surgeries so we can get that over with as quick as possible.  I know the next year ahead of us is going to be the hardest year of my life, but I also know after that we will have a few years of bliss! 

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