Wednesday, December 4, 2013

Just keeping it real folks…

IMG_0502We had a scary Monday with Mason but are 90% sure it’s nothing.  He was lethargic (falling asleep every hour all day), wanted held nonstop, and developed a high fever (almost 103.)  It’s one thing I hate on this journey. Running through my mind are worst case but oh-so-possible scenarios.

  1. Fever could be a major infection.  With a wide open incision this is a very real and very scary possibility.
  2. The lethargic and miserable child could be shunt failure #7. 
  3. Both at the same time was a distinct possibility.  It still is. 

We watched him closely because it could also be that he was finally coming down with the nasty bug that has been working its way through our family.  It seems that is the case.  We think. He’s not eating well still today (Wednesday) but the fever was gone in 24 hours and the lethargy was too.  It could still be shunt issues as Mason rarely presents with classic failure symptoms but it is seeming less likely.  He is already scheduled for an MRI to check in on the shunt in about 1 1/2 weeks. 

100_6375  Mason on Thanksgiving with the cousins and siblings.

In the mean time life moves forward.  We are still packing his incision and doing daily bandage changes.  He’s very patient with the process, which takes over an hour between his nightly enema and the actual bandage change. 

The enemas have become essential on a daily basis again because spending so much time in the wheelchair has affected his bowel function.  We were doing enemas every other day for a while.  What was already barely moving along with help now is constipated again.  We’re increasing miralax, spending longer time with the enema process to allow the fluid to work it’s magic, and trying to increase his water intake and watch his diet to avoid constipating foods. 

100_6357We got a call today from the orthopedic surgeon’s office asking to reschedule Mason’s appointment for a month later.  “Sure thing,” I said, “though we probably won’t see you then with everything going on.  And by the way can you let Dr. K know Mason isn’t wearing any of his bracing and hasn’t for months because his hips and feet are contracting and he needs a spinal cord detethering, which he won’t get for months yet because his other surgery failed and we’re waiting for an open incision to close?” 

The silence on the other end of the phone lasted for a few seconds and then, “Oh I’m so sorry.  Is he going to be okay?”

“I don’t know.  I really just don’t know,” and then I had to get off the phone because it’s true, I don’t know if Mason will be okay, and I start to cry. 

I don’t know if the nerve damage he’s gaining while we wait to do the detethering will be permanent.  I don’t know if this incision will be closed soon or if it will take months.  I don’t know if his shunt, which has already failed SIX times, is failing again already.  I don’t know what this means for tomorrow or next week, much less a month or a year from now, and my precious son is not even 2 years old yet. 

These moments sneak up on me, moments when I crumple under the weight of the never-ending, bone-weary, uncertain road ahead of us.  The endless circle of medicines, catheterizations, enemas, bandage changes, surgeries, and tests.  The doctors who can only say, “I don’t know…”.  This process is agonizingly slow, two steps forward and three steps back. 

100_6115If you came here to hear some upbeat post about how easy parenting a special needs child is, come back another day, or read through the past posts.  Because many days are easy.  The routine carries us through our version of normal and we don’t notice the weight because we are so wrapped up in the joy of this child who loves wholeheartedly, laughs with abandon, and does amazing things every moment of every day.  He is a living, breathing miracle.  I don’t take that for granted.  But not every day is easy.  Some days are hard and usually they come unexpectedly.  Today was one of the hard days.

7 comments:

  1. It's a season Tristan. I've been through many of the "I don't know" seasons with Caleb. They do pass. I'm sorry things have been so rough with your little guy recently. I'm always amazed at what our kiddos can go through and still smile, just looking at that big smile on Mason's face is warming.

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  2. I'm sorry, Tristan. It's good that you wrote this, though. It's good to let others pick up a piece of your burden--even if we can only do it emotionally--and help you along the way. I'll carry what I can; I'll offer extra prayers; I'll think send energetic and optimistic thoughts your way. If it helps (and it may not), I just came out of a season of terrible despair and hurt. Nothing seemed to go right, and I could not count my blessings no matter how I tried. I could not find the light. I slogged through each day. And then it got better. I don't know what changed (if anything), but it got better. I'm so very positive that it will get better for you, too. "Hang on" is such horrible encouragement, but it's all I have to offer, because hanging on is all I could do.

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  3. Thanks for sharing from your heart. I've been a reader of your blog(s) for years and I share with my family all that is going on. We cont. lift you and Mason and your whole family in prayer.

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  4. I'm sorry you are having such a rough time. I had tears in my eyes as I read what you wrote. Mason sounds like a very special young man.

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  5. I'm so sorry!! You are a strong mama and Heavenly Father knows you are the one
    capable to care for this child of God. Its ok to cry. Its ok to feel
    overwhelmed and its ok to worry. Know that you have people praying for you, holding you up in prayer. Stay strong!!!!

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  6. Praying for your family this Christmas. It helps to put a stomach virus back in perspective. Thank you for being honest.

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    1. Thanks April, we can use prayer always! Stomach virus is no fun, especially in a large family...

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