Wednesday, November 21, 2012

My Thanksgiving List

     Thanksgiving is tomorrow, and I have been wanting to sit down for a month and express my gratitude for some of the blessings in my life.  I am grateful for all of the usual things, but there is a few things in particular I wanted to focus on.  The first being the many instances of overwhelming kindness and compassion that my family has been the receipient of. 
    James was born in November, and just days before Thanksgiving three years ago, we buried Samuel, and then I returned to the hospital to bring my very fragile little boy home from the NICU.  It was a day of both extreme sadness and one of gratitude for James' survival. I will never forget coming home and finding a box full of Thanksgiving dinner on my porch.  James had trouble keeping his temperature up and we wouldn't be going anywhere that year, were in the NICU poor house, and that dinner was especially sweet.  However, it was the note that went with it and the handmade blankets that I will always treasure.  Whoever had left us the suprise said they had heard of our situation through a family member.  They too had once had a child in NICU and they had been praying for us.  They made a blanket for James and one for Samuel, and she said that she had thought of us and prayed for our family with every stitch.  The blankets were such a comfort to me, and when I am missing the ability to hold the son I lost, or when I am mourning the consequences of James' illness, I will often hold those blankets and know that I am not alone. 
   Since his birth, I have had so many people help me with my other children, with rides and babysitting, with building projects for James, and also with a fundraiser that was so hard on my pride to do.  I have been humbled and brought to my knees by kindness from people who I know could hardly afford the time or cost of it, by things I have been asked to not mention or I would want to.  A friend once came to my defense when I was confronted with some people who were brutally insensitive, and she asked how I could stand it when people can be so cruel.  I can stand the few that are cruel because I have been overwhelmed by the love of many.  Thank you, I remember you all, and I couldn't do this without you.
      I am also grateful my family.  I have a husband that is so patient with me.  He never gets angry with me, and loves me on my dark days as much as my light ones.  He seems to have endless strength and endurance although I know how much he is taxed by the life we live.  I cry, I lose hope sometimes, I may wallow...but he just keeps on going.   I am grateful for my sweet kids, who love their brother and each other.  They help me so much, are turning into such wonderful people, and never begrudge me the things I can't give them.  They find joy in the simple things and are a great example to me.  Their is no end to their compassion towards me, James, or the people they see around them.  If God had a purpose to all of this, perhaps it is how kind and patient my kids have had to be, how they have had to learn what is important in life.  Me, I have had to learn to be more patient with the fact that I am not in control.  To trust that it will work out even if it is hard.
    I am so grateful for my family and my in-laws.  My mother in law is so good to me, and loves my girls as her own.  She is supportive and never someone I dread seeing.  My brothers married good women who I love.  My sister-in-law watches my kids, makes them clean and does my dishes.  What more could I ask for? 
    I am so grateful for the friends I have made over the last little while.  Friendship is hard for me because I can't do the things that it usually takes to maintain a friendship, and sometimes what I have to say is hard to hear. I am so grateful when someone is able to overlook my flaws, my time limitations and realize that I will be here for you forever if you will simply accept what I have to offer and forget my sometimes appaling lack of social graces.
     Lastly, I am not often one who speaks openly about religion because I have such a respect for those who feel differently and I don't like to ever be "in your face," about it.  I am however very grateful for the small mercies that I receive from my Father in Heaven.  I am grateful for his constant forgiveness for my headstrong ways, and for bringing those into my life that I have needed most.  Happy Thanksgiving everyone. 

Wednesday, October 24, 2012

Living at the hospital

     It has been a crazy month.  To start out with, Maddie had surgery on her right hip.  It is a big surgery for a fourteen year old girl to deal with.  They have to cut entirely through her bone, rotate it to the proper angle, and then place a plate and screws into the bone to hold it in place.  She had the left side done last year.  I knew how tough she was from that one, but she has absolutey amazed me with this one.  She came home a day earlier, only took pain meds for two days, and went back to school after a week.  I am so proud of her! 
     James had his preschool IEP, and had his intrathecal baclofen pump trial.  It was Maddie's first day back at school, but I couldn't reschedule the trial because the next date available wasn't until January.  It was hard to juggle getting all the kids to school, getting to the hospital at 7am, and making sure that she had someone who could bring her home if need be at a moments notice, but between my incredible church members and my family, it worked out.  I also worried about how he would react to having to lay flat for that long and of course, whether he would be stable or pull something funny.  However, he tolerated the insertion of the baclofen into his spine with little crying, and for the next few hours was very happy.  He laughed at every little thing.   I think he really enjoyed the feeling of not being so tight.  The doctors said that they felt it was a successful trial and that they rarely saw anybody that they felt so strongly about saying "this is the right course of action for this kid." They sent the referral to neurosurgery for the pump implantation and told me to call for an appointment.  I called on the way home and they had one the next day!  Neurosurgery is usually booked out for the next twenty years.
    Things seemed to be fine until 4am the next morning.  James woke up and wouldn't go back to sleep.  He would throw up whenever he was moved even slightly and was becoming increasingly irritable.  By 7 am he was screaming.  He had a spinal leak with a spinal headache.  The treatment was to increase his fluids (thank you for g-tubes!) keep him completely flat, in the dark, cold pack to his head, and give him non-carbonated caffeine down the g-tube. I sent my youngest daughter over to the gas station for a small coffee.    The whole time I was picturing her telling the clerk that it was for her little brother, and thinking that I must be crazy to be giving my already irritable special needs kid caffeine.  Call me Brittney Spears.  It was even hard to explain to my husband that it was a good idea because it constricted blood vessels in his head.  Amazing enough, it all worked and about noon he was calm and no longer screaming or throwing up as long as we stayed flat and still. I realized I couldn't get James up to the neurosurgeon and still keep him flat and so I had to cancel my appointment.  Now the pump probably won't be implanted this year.  The discouragement got to me a bit as I realized that our huge 5600 deductible would be up again by then and that it would mean another round of botox like last time before pump implantation.  I am so tired of this poor kid being put through so much.  However,  I don't know what I would have done without good neighbors I could call at the last minute and ask them to take my kids to school and bring them home, injured Maddie and all!  I had treats show up on my doorstep and dinner brought over for three nights. 
     Lastly, I found out the James is having an odd breathing pattern and choking when he is upright because he has a condition called laryngomalacia.  He is scheduled to have surgery on his airway on November 12th.  Yep, I live at hospitals.  If I am not in one with my kids, I am in one at work.  Sometimes being a nurse is too close to everyday life. 

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.