Not Smooth Sailing Yet But We Are Getting There…..

Four weeks out from Cannon’s surgery, things are……well…..still complicated.

Early last week, when we removed his dressing to do the flush…….we noticed some blood. Covering about 1/2 of the dressing.  It wasn’t gushing but it was there.  And it wasn’t something we had seen at all yet.  So, of course, I called the surgeon.  She, first, asked if there was a particular look to the flesh around the button (I am sparing you the icky words she used to describe).  There wasn’t.  But we still wanted to see him that afternoon.  When she took a look, she noticed that the Mic Key button is digging into him……causing the bleeding.  She said it is going to need to be replaced soon……for a button that is longer.  But she wants to wait a couple of weeks.  When it does happen, she wants to arrange it for a time when Mark and I can go into the Operating Room with her.  So, that she can show us how to put the button in ourselves.  I am thrilled about this idea!  Sense the sarcasm…..cuz it’s there.  The reason for this is that every so often, the button will have to be replaced and that job will fall to us eventually.  There is also, of course, the chance that he could pull it out and we would need to be prepared to act quickly.  In the meantime, we are changing the dressing more frequently to compensate for the bleeding.

Later in the week, when we removed the dressing, we DID notice a small amount of flesh that looked suspicious and more bleeding.  So, I called the office again and spoke with the Nurse Practitioner.  She said that this is called  “granulation tissue” and is the body’s way of reacting to this foreign body.  She wanted us to be seen in the office next week and have the tissue treated with Silver Nitrate.

And today was that day.  Which was a good thing because since my last conversation with the office……the condition of the skin around his button has gotten out of control.  It looked just AWFUL!  Excuse the gross visual but it looks as if a huge fat, bleeding lip has grown under the button where flat, pink, perfect skin used to reside.  And it really seemed to be bothering my poor buddy!  His behavior and sensory issues have been extremely unpredictable and volatile as of late!  So, three of us held him down in the office today and the Nurse Practitioner treated the area with long, skinny swabs that looked like long match sticks.   These had the silver nitrate on them.  Before long, all the tissue had a black appearance.  The surgeon who had joined us by this time told us that this procedure should work but possibly might not.  And our back up plan is to try something called “mesalt wound dressings.”  Just like ocean water dries out your skin…..gauze soaked in saline, dried, and applied to the wound can also do the trick.  We just want it gone!  They say it is mostly cosmetic but this granulation tissue does bleed when bumped so obviously, we want to do our best to get rid of it.  Seeing the blood makes him more nervous.  Also today, the water level in the button was tested.  The little balloon under the skin that holds the button in place (see the picture in the last post) contains 5 ml of water.  This balloon can burst or some of the water can dissipate over time…..causing the risk of the button coming out.  So, it is to be tested about once a month.  His button had about 4.5 ml in it so there was a small amount added.  And then we were able to let my brave boy put his protective band back on and play with his iPad while we chatted with the surgeon.

We then discussed the next surgery.  And it was decided that since the button didn’t appear to be digging into him as badly and what we did in the office today could use time to heal…….we would hold off on the newer, longer button for about 3-4 weeks.  We were able to inform her that the flushes have been more successful.  Cannon still gets very upset and fights when we bring him into the bathroom to begin the flush each day.   And he struggles mightily to allow us to perform the procedure but we have been able to get the job done.  Thoroughly.  There is still a decent amount of cramping and it still takes about an hour to complete……but progress is bing made.  And after the first 10 or so minutes, he does relax more and more.  Giving his stressed out body an break!  Thank goodness!

So, there you have it.  Our blog status update from Cannon and family!  We sure hope all of you are well and thank you for checking in on our precious little man!  🙂

2 thoughts on “Not Smooth Sailing Yet But We Are Getting There…..

    • We miss you! Cannon said “Hi Mary!” when I told him. It’s been so weird to not see you for so long! Hopefully, we can heal up and get back on schedule soon! Lots of love and hugs! 🙂

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