Family Pic Nov 2015

Family Pic Nov 2015

Saturday, April 28, 2012

Aaron's Surgery Part 2

When Aaron was waking up from his surgery, he was in complete agony.  It was horrible.  His legs would "spasm" and cause him excruciating pain.  I have never heard him scream like that before.  It was so heartbreaking and frustating for me to watch him go through this.  From what I understand, when they "lengthen" the muscles and cast them as straight as they will go, his body/brain still wants to try and "contract" the muscles the way they are used to being.  Thus the spasms.  On top of this, the muscles have been traumatized by the lengthening/teasing of them.  As he became more lucid he began screaming, "Take the casts off!"  I can only assume that he thought the casts were causing his pain.  I tried to reason with him that they couldn't take the casts off and that even if they did take them off, his legs would still hurt.  But he was beyond reasoning with and continued screaming.  I am sure it was scary for him to have his legs confined in a position they have never been in.  By the time they moved him to his recovery room, his blood pressure and heart rate were spiking pretty high every time he had a spasm.  At one point his blood pressure reading was 153/102 and his heart rate was hitting the 150s.  The nurses were trying to rush the doctor to order some better pain management meds.  They ended up finding the perfect combination of valium and morphine.  The valium not only relaxes the brain, but it also relaxes the muscle spasms.  It worked very well.  I was so much more relieved when they were able to calm him down.  But this combination of meds caused him to be very sleepy.  This was good for overnight!

The next day (Friday, March 23), they wanted to wean him off of the morphine to Tylenol with codeine.  And he really wanted to go home!  They wanted me to encourage him to start eating and drinking so they could take out the IV.  In order to go home, he obviously needed to be able to take his meds orally, be able to eat and drink sufficiently, and get into a wheelchair.  But he was fighting sleepiness and not feeling like eating or drinking.  He complied as best he could.  Here he is forcing the best smile he could muster up, given how uncomfortable he was.  Any slight incline in his position (other than completely flat) caused him significant pain on the backs of his hamstrings.  He could only tolerate an inclined position for short periods of time.



Later that afternoon, the doctor told me he could go home whenever I felt comfortable getting him home.  It is about a 4 hour drive from Philadelphia to our home in Virginia and I was worried about having to make stops with him or hitting traffic if we traveled during the day on Saturday.  So I opted to hit the road at 8 pm that Friday night.  My hope was that I could drive it straight through while he slept.  They gave me a specially designed restraint system so that he could lay flat across the middle bench of my suburban. 



I definitely made the right decision as we hit no traffic and made it home in a little less than 4 hours with only one stop for gas.  He did become pretty uncomfortable and cried during the entire last half hour of the trip.  I was so glad to be home and so was he.  Carrying him flat was quite a challenge.  He normally sleeps on a bottom bunk bed, but this would have been too difficult to get him onto.  So we pulled out our futon in our bedroom and let him sleep there for the first couple of nights.  Here he is right after we arrived home and got him set up for his first night home.


Shriners is a wonderful hospital and the doctors and nurses were so good to him.  The pillowcase and tie dye blanket you see in the picture are his to keep from Shriners.  They let him pick them out himself.  He still sleeps with them : )

Since his surgery, we have made two follow up visits to Shriners Hospital.  In my next post, I will explain more of the post-surgery recovery, the "wedging" process they have had to do, and when he is to get his casts off.


8 comments:

  1. I am so sorry for the pain that Aaron had to endure, praying for the pain to subside and for him to be comfortable and happy again.

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  2. I love that little boy and I don't even know him!!

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  3. Breaks my heart to read about his post-op pain. I hope he's done with surgeries!! If not, be sure to remember that combo of meds they used to finally help his pain! I'll be praying that all goes well and that both Aaron and Mom can handle those casts! Hugs to Aaron!

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  4. So I hope this question isn't inappropriate... I remember when you brought Julia home that you were trying to find out what was going on with her genetically and thought perhaps that she had Cockayne (sp?) Syndrome. Today I was researching on the web and came across something called Cornelia de Lange syndrome. It struck me immediately that many of the children who have this syndrome share a number of facial features with Julia. Is there any chance that she might have this?

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    1. I have no idea! And no this is not an inappropriate question. I will look into the possibility of it. We know which chromosomes are "abnormal," but the genetic counselors could not come with a complete diagnosis for all of her chromosomal abnormalities. She has balanced translocations on her 9th and 16th chromosomes (even amounts of genetic info switched places)and some part (5Q14.3)missing on her 5th chromosome (a different section from what diagnoses CS) and part from her 10th (I think) chromosome inserted there (unbalance translocation). As you can see, it sounds complicated. In the write up the genetics dept gave me, basically stated her diagnosis falls under "unique chromosomal abnormalities."

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  5. I don't have a sufficient understanding of the genetics involved to put that all together, as the info I read doesn't refer to the genes as "the 5th" or the "10th" genes. They kind of speak a different language. However, if you look on Facebook under CdLS-KIDS, there are photos of a number of adorable kids who look enough like Julia to be her sister. I think the look is almost as distinct as Down syndrome is. There are a number of symptoms that go along with CdLS that may vary depending on the specific genes involved. I kind of figure it only matters in as much as it is helpful in providing medical treatment and appropriate therapies, but I know it's also nice to connect with other parents who know what you're talking about.

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    1. Thank you! I did look at the specific genes that this syndrome speaks of and they are not consistent with any markers for the genes Julia has affected. Though there may be similar characteristics/features, it looks like this is not it either. But thank you : )

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