Monday, August 11, 2014

Wait, Watch and Worry

We have no idea what Matthew's future holds, but really does anyone know what the future holds?  We do like to pretend we have some modicum of control and these are some questions we are often asked about Matthew's future.

Will Matthew require any additional surgeries?
Most likely. 

Hand?  We currently don't think that he will have hand surgery (pollicization) to move his index finger to a thumb position.  We have every belief that though Matthew may struggle to do certain things with his hand configuration as is (like put a coin in a slot), we know how persistent he is and he will figure out a way.  Every surgery has risks and the risk/reward puts this surgery as a low probability.  That may change with time, but this is our thinking today.

Cyst?  Matthew has a cyst between his belly button and his bladder.  Our urologist would like to remove it, as the ones he has seen often become cancerous.  But the urologist also notes that there is no telling how many of these cysts exist without issue, as the ones he knows about are the ones causing problems.  We will likely seek a second opinion before heading to the OR for this, but it is a higher probability.

Adhesions?  In April 2013, Matthew's bowel obstruction, emergency surgery and 12 day hospital stay reminded us that the internal scar tissue from his previous surgeries may continue to cause issues.  And the issue with going in to remove scar tissue is that you create more scar tissue, some of which may need to be surgically removed.  This will always be a possibility and worry for Matthew (as it was a concern just a few weeks ago).  Our hope and plan in the future is to catch it early enough to avoid an emergency situation.

What do you have to worry about with Matthew?
Besides his overall development, medically we wait, watch, and worry mainly about his heart and his kidney.

Heart?  Matthew's heart is healthy and well today, but he has some anomalies that keep us checking in with the cardiologist.

These heart anomalies give him an increased risk for aortic aneurysm, heart failure, and other serious heart issues in the future, which is why we wait and watch.

Kidney?  Matthew's lone kidney is healthy and well too, but we are rabid about keeping it so.  We see the urologist yearly to check on it, and in the meantime, we do everything prudent to keep it healthy (no NSAIDS, etc).

What else?  Matthew's other uniquenesses (the throat anomalies, or vein differences, or who know what else) may end up surprising us-- we have been surprised many times before-- but not much else is on our radar today.

I look at this list and it seems pretty tame compared to where we were 4 years ago. For that, we are VERY grateful!!

Matthew in the every day-- a busy, mostly healthy little boy!

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