Wound Revision and a CSF Leak (Condensed Version)

Friends, here is the "condensed" version of our last 24 hours or so.  The extended, unedited version will be in a separate post that our readers will have to either manually view by going to our blog site OR by sending an email requesting it.

Today, we went back to Children's Hospital for Rees' "wound revision" surgical procedure.  Our little buddy was in a GREAT mood the last two days and that made us GIDDY!  

Prior to today's surgery Rees still had the staples along the incision on his head as well as most of the stitches in his nose.  They tried to remove his stitches last week, however, the skin began to separate at this attempt.  Rees' nose was very visibly swollen and I noted that there was a soft, squishy area that seemed to be filled with fluid.  On this past Saturday, fluid actually began draining from the incision on Rees' nose.  Since then, it has continued to drain, though, it has been more of a trickle instead of a steady flow.

We went into the Surgery Waiting Room a little 'lighter' than we did two weeks ago.  That was on account of Rees being so entertaining after getting the "goofy juice" that is given to patients prior to surgery to help calm and relax them.  Two weeks ago, it seemed that this stuff had no effect on Rees, other than to make him withdraw even more BUT shortly after taking the medicine this time he was SO GOOFY and we could not stop laughing!!

Rees was so giggly and smiley.  He was sort of all over the place, though, so he needed to be held the entire time.  Even in Baba's arms, he was rocking and swaying like he was on a boat in choppy waters!

In this photo, Rees is telling Baba he wants to be given THREE popsicles after his surgery!

When Dr. Denny came in, Rees kept saying his name over and over.  He gave Dr. Denny a "high-five" and grabbed at his name badge.  Dr. Denny showed it to him and Rees said, "Wooooohhhhhhhhh!  It's Dr. Denny!!"

Sooo ... here's what Rees' skull looked like BEFORE the first surgery.

Here's what Rees' skull looks like now.  Quite an amazing difference, isn't it??

As of yesterday, though, the surgeon backed off the nasal bone graft because it was actually poking through the skin at the end of his nose and also because it was putting negative pressure on his already weak and damaged skin.  I'll post more about his skull and future surgeries at another time.

During the surgical procedure yesterday (which was for a wound revision) it was discovered that Rees has a CSF (cerebral spinal fluid) leak.  A CSF leak is "Any tear or hole in the membrane that surrounds the brain and spinal cord (dura) can allow the fluid that surrounds those organs to leak."  Okay, talk about putting me into an instant and major panic attack.  They do not know the actual cause of the leak or from where it is actually leaking.  Obviously, this must have occurred during his first surgery and is likely the main cause for the lack of healing and skin damage at the site of his nasal incision.  

There are several things that we need to be aware of and monitor such as:

• Continuous and heavy bleeding or drainage from wound
• Change in drainage (color/foul smell)
• Increase in redness or swelling at procedure site
• Fever over 101.5F within 3 days of procedure
• Decrease in appetite, eating less

I am concerned by the color and swelling that he has today so I did take a couple photos and sent them to the surgeon's office already.  

The incision is definitely cleaner than yesterday prior to the procedure as they were able to remove the dead tissue and skin but there is now the issue of the CSF leak.  The surgeon told us to go right out and get one of these nylon caps like Rees is wearing in the photo above.  Putting pressure on the head/skull may help to stop the leak.  I also read that "Drinking increased fluids, especially drinks with caffeine, can help slow or stop the leak and may help with headache pain."  I told him to drink up ... this is one of the rare instances he will be allowed unlimited Coca Cola!  

We're told best case scenario that it will heal on its own within a few days.  However, I'm not so sure that I am buying that because he's already had this, almost for certain, for five days already (at least to the point of it leaking out through the wound) but yesterday was two weeks from the date of the first surgery so the leak could have been since then.

Another option is to admit Rees into the hospital again and insert a drain.  The surgeon mentioned something about keeping him in an upright position (no, I do not understand this very well) and this would help to control and stop the leak.

And then the last option is to have another cranial surgery allowing them to go in and "hopefully" locate the leak and maybe 'patch' it.  

I will admit that I am struggling a bit more now.  It's very difficult to see that healing is not coming, when really it should have been well on its way by now.  

I am doing my best to TRUST God and to allow Him to lead me, guide me and sustain me.  But once again, worry is at my heels and laughing at me.  I'm trying really hard to ignore it. 

Your continued prayers, of course, mean so much!  We are asking specifically for:

• The CSF leak to STOP
• For color and swelling to return to normal at the site of the incision
• No Infection