Just keeping it real folks…

We 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. 

  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. 

We 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. 

If 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.