Sunday, September 23, 2012

Botox: War and Peace

     This week was the week James gets his Botox and Phenol injections.  It has been a regular part of his life every three months since he was about a year old and I await Botox day as both a day of salvation and a day to dread.  Usually, long before his injections are scheduled, his arms and leg muscles have become so tight that he is very uncomfortable, and is unable to do much of anything purposeful at all.  He is so hard to move, change, position, and exercise that I look forward to the relief that the shots will give him.  I think of the floppy muscles the way some women think about margaritas on the beach.
     However, to get those nice limber muscles, James gets about 14 different injections.  The use general anesthesia so he doesn't feel them immediately, but what the phenol does is essentially chemically destroy the nerve. is painful when he wakes up and a few days afterwards.  On top of that his brain interprets pain abnormally anyway, and so the few days after are hard.  He cries, and I cry.  Sometimes he wakes up from anesthesia and does well, other times he is unstable.  So why do we do this to him?  Because if we don't, those stiff muscles will make his tendons permanently shorten and his bones deform.  His oral medications aren't controlling his spasticity.  Within the next couple months we are going to have to make a decision between him getting a intrathecal baclofen pump or having a selective dorsal rhizotomy.  They had to stick him about 3 times for each injection this round because he was so scarred.  (yep, that makes about 42 pokes) I hate that we have to make so many choices for this sweet little boy that are just varying degrees of awful. 
     The week has a good ending though.  Today, after several days of almost non-stop crying he was happy.  There was a moment where he was laying on the floor and all of his siblings were around him.  They were all playing lego's and laughing.  I was sitting by my husband and we were all still in our PJ's.  I watched as our kids were dumping lego's over James' hands.  Very slowly and deliberately, he reached out and brushed his hand over the pile, squealing with delight that he had been able to get the block.  I sat there thinking, "it may be a little thing, but right here, right now, I am happy." James has taught me a lot of things and one of those things is that it is the little moments that matter. 

Wednesday, September 12, 2012

James' story

     James' story starts long before he was born. I was about six months pregnant with my identical twin boys and everything was going well.  I was having frequent ultrasounds from a high risk doctor as twin pregnancies were higher risk and I was getting very excited even though I was also overwhelmed.  However, at one of my ultrasound appointments, just as we were beginning, I noticed that one of the babies wasn't moving and the tech looked only briefly for his heart beat before she slipped out the door to go get the doctor.  We had lost Sam.  To this day I still don't know why.  Amniocentesis was normal, ultrasounds had been very good, and I had been very healthy.  My doctor told me that there was a small chance that the remaining boy could have brain damage due to the death of his brother.  They had a shared blood supply, and because of that James could have had an inturruption in the blood supply to his brain for a few minutes after Sam died. 
    The next week on my ultrasound it was obvious that James' ventricles were enlarged and that he had indeed suffered the equivelent of a massive stroke.  Further MRI's, ultrasounds and consults from various doctors showed how bad the damage was.  James would most likely never move much, be unable to swallow well, be blind, deaf, be unable to communicate, and may have little personality to extreme irritability.  Needless to say, it was an incredibly hard time. 
     I carried the twins until 36 weeks when my water broke on November 16th.  Neither my regular OB doc, nor my high risk doc were on call that night and so I was going to have my section done by someone I had never met.  When the on call doc got a hold of Dr. Draper (the high risk OB) to get a better idea of what to expect with my son, Dr. Draper (who was out of town) said that if I could wait a few hours he would drive to IMC and do my section.  I don't know if I can ever express how much comfort that gave me and how grateful I was for how caring he had been to me during this mess.  I don't know what I would have done without him and his wonderful tech Melissa. 
    I delivered both boys and although he was on the ventilator for a few minutes, he was able to come off and went to well baby nursery with me.  He had seizures after a few days and ended up in the NICU anyway because the seizure meds made his so sleepy he couldn't eat.  Just before Thanksgiving I was able to bury my sweet Sam and bring James home.  He has spastic quadriplegic cerebral palsy, is cortically blind, eats orally and is supplemented with a G-tube feed at night, but he has the biggest personality ever.  He has a wonderful sense of humor, and loves his siblings Madison, Sierra, and Jeffrey. His dad, Jeff is the best daddy ever and we are both lucky to have him.