Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, April 23, 2013


We are almost two weeks post op for miss Meagan.  So far, except for a few little bumps in the road, everything seems to be going well.  Pain management has been a huge part of our time over the last 13 days. As you can imagine, the incision down the back of Meagan's head into her shoulder area was not only extremely tender, but also very painful whenever she tried to move.  For a long while, she wouldn't even move her head to the side to look around.  If she heard my voice in a room, I would just see the slightest movement from her little eyes looking toward my direction - but ask her to move that neck, oh, no way!  I don't blame her... she handles everything so much more gracefully than I would!

Early in her recovery, Meagan started to spike fevers .  I also noticed her incision go from pink to an angry red.  I sought the opinions of my expert Hydro parents and we all agreed it didn't look right.  I didn't *think* it looked infected, but just "mad."  Mad is really the best word I can use to describe it.  I did have the Pediatrician take a peek at it and she agreed that it didn't look infected, but, it also didn't look very good.  She said in a few days if it didn't clear up to call Dr. R.  Sure enough a few days later it wasn't cleared up.  Matter of fact, it was worse and a few spots along her incision started to open up here and there letting blood escape.  On my gut feeling, the doctors' advice, and the hunch of my hydro friends, I decided a quick call in to Dr. R wouldn't hurt.  His nurse was very receptive and looked at an email of Meagan's head.  She said of course Dr. R wanted to see Meagan right away if we could make it down to Children's.  I agreed and luckily my sister in law was here to watch the kids for me so I could leave right away. (Thank you K!)

Dr. R was in his lunch hour, but, he stayed behind to see Meagan.  (which I thought was very nice because we would have gladly waited until after lunch knowing he was squeezing her in).  He was puzzled by her incision because he said it didn't look *too* much like it was getting infected, however, he could not firmly say it wasn't on its way to infection.  Knowing how close that area is to her shunt, and knowing she had g-tube surgery coming up, he decided to go ahead and treat her empirically for infection with a hefty two week dose of Keflex.  I was in agreement because especially with infection, and especially with Meagan, I'm always of a "better safe than sorry" mindset.  He told us to come back in two weeks and let him know if it got worse at all or if anything else came up in the mean time.

Two surgeries in two weeks? Who does that mom!

We started Meagan on the Keflex that Wednesday.  For several days the incision looked the same or even worse.  Then by about Friday night I noticed it started to look better.  More dark pink instead of angry red and less oozing.  I was relieved things seemed to be on the upswing.  But then Sunday, as the day went on, I noticed her incision looking quite red again.  What caught my attention this time was the redness spreading.  It didn't just "hug" the incision as it had done in the past....this time it was moving.  But only to the right side.  That made me uneasy because on that right side is Meagan's shunt valve.  And directly on top of that valve is where the redness was spreading.  Not to the left at all.  It really made me uncomfortable how the redness returned and how it seemed focal on her shunt side, but, she was also still extremely happy and playful, so I didn't see a need to panic.  I talked it over with Brian and a few close friends and decided a call in to Dr. R today might be a good idea just to let him know what's going on.  Again, I really don't think it's infection, but, with redness returning and focusing so strongly on that right side, it can't hurt to have him look at it again.  The last thing we want are any complications with recovery - but most especially a shunt infection.  Those are nasty, dangerous, and take quite a long time to rid from the body.  We have her g-tube surgery coming up this Friday, so we want to make sure everything is going as smoothly as possible beforehand, so we will see what Dr. R says today.

Redness spreading out from incision and creeping up towards Meagan's valve

It took about 5 or so days for Meagan to return to her playful self.  She still would not move her upper body or neck, but, her smile, laugh and overall silly attitude returned and it was a great sign of recovery.  Since then, I would say between about day 10-11 of recovery, Meagan suddenly has started to move her neck again.  She will move it side to side to look around, she will attempt to pull her head forward and hold it up just like she did pre-surgery, and she will even roll to her side when laying on the floor with a toy.  I would say Meagan is just about back to herself as far as attitude and mood.  She is extremely happy and just has a zest for life I can't possibly transfer into written word.

It's kind of funny how hindsight works.  Many times, we talk with our friends and family about how we "should have, would have, or could have" done something better, differently, or in another way.  Hindsight is always 20/20.. and that's a good thing so we can learn and continue on with less mistakes.  But sometimes we get a nice surprise.  Sometimes looking back actually gives us comfort, and doesn't have any regrets.  Sometimes we get that 20/20 view of a tough decision we made that turned out to be the answer we needed.  

So content watching her sisters' Irish Dance show

That's how Brian and I feel about Meagan's recent Chiari surgery.  It was a tough decision - a very invasive surgery and everything that went along with it.  But to 'let' her exist with her pain episodes when we knew there was a chance this could help - it just made the decision that much easier.  Nonetheless, as parents we always want to do right by our kids.  It may not be the painless path, and it may not be an easy one, but we always want to do what's right by them...what is best for their life.  Weeks after such a surgery we were still holding on to that little "what if" questioning our decision to go ahead with helping relieve the Chiari.  Now at this point I can confidently say it was for sure the right choice.

Meagan has had no pain episodes since surgery. None. Yep, you read that right. ZERO incidents of throwing her head back in discomfort, crying in pain, and pounding her head with her fists.  She has also had a huge decrease in her apnea alarms.  She actually went with NO alarms for almost two weeks until two nights ago when she had four in a row.  She is also congested though, and I think that is affecting her a lot especially when sleeping.  So removing that from the situation, it means healthy Meagan has had ZERO alarms.

Such a happy girl!

Anyone who knows Meagan well and in person knows above all she is a happy little girl.  She is joyful and smiley and always loves people.  Pain episodes aside, if you had told me Meagan could be an even happier girl, I wouldn't have believed you.  But, she is.  Amazingly since surgery, Meagan's mood and emotional state are even brighter and more joyful than prior to surgery.  It's one of those situations where you didn't realize how bad she may have been feeling until we see the Meagan of today.  Now being afforded that comparison, she is undeniably more comfortable, more silly, laughing and smiling more, and has even picked up a few new tricks.  Her "copying" ability has suddenly gone through the roof in the last week.

Meagan attempting "peek - a - boo"

Got it!

Meagan's other new trick - crossing her arms.

Meagan's newest mimic as of last night - beeping her nose.

20/20 vision is not always available when making tough decisions about the future.  But hindsight being 20/20 is a good tool on which to gauge such decisions.  To look back even just 3-4 weeks ago and clearly see the huge positive change this surgery has suddenly brought to Meagan, we can certainly say with confidence it was needed.  We see with full and clear vision the new improved quality it has added to Meagan's life - and that is what truly matters.  We can't wait to see what other surprises she holds in store for us.

1 comment:

  1. Reading about Meagan always makes me smile. I'm glad the surgery has made things better for her and that the 20/20 vision is positive. That is great news. I loved the videos too, she is a smart little girl.