Monday, January 18, 2016

Malia's Tongue Flap Surgery(and other stuff!)

It's been rather frigid around here lately, with temperatures dipping down to -43C with the wind chill!  Many of our days are spent cooped up inside, and for the most part we stay sane.  We do tend to watch more TV, drink more hot chocolate, and get more school work done.  So, all things considered, it's not all that bad!
The view has been nothing short of spectacular!  Nothing like an extreme cold snap to bring out the beauty of winter!

Wren has been begging me to put her hair up in a bun, like Tinkerbell.  It's not quite long enough just yet, but hopefully in a few months we can fulfill her wish.  She recently got a bit of a trim and is rocking her new look. She really didn't want a haircut, cause to her it meant cutting all her hair off.  After explaining we were only going to trim it to even it out, she was ok with it.  And she was very happy with the outcome.

Malia had her tongue flap surgery on New Year's Eve.  It sucked to bring in the new year in the hospital, but as I chatted with other families waiting as their loved ones were in surgery, and as I looked around...well, I couldn't help but be grateful for a lot of things!  The sweet walls in the PICU are so bright and wonderful!  The medical staff was nothing short of awesome.  But mostly, mostly I was so very grateful that our stay in PICU was short and not due to some major illness.  I honestly don't know how families spend days, even months with a child in the hospital.  So much to be grateful for!

Before I share about Malia's surgery, I want to mention that sharing is never easy, nor do I share without a lot of thought and prayer.  Malia is old enough to be self conscious.  Old enough to be embarrassed by what I share.  So, I had a good chat with her...about my blog, who reads it, and what I share.  I asked her permission on what I could share.  And for the most part she was perfectly fine with my sharing almost everything.  Even the disgusting picture of her tongue!  In her words..."why would I care if people see my tongue?  They might get grossed out, but what do I care?!? (insert a little mischievous grin!).  So if you have a weak stomach, be sure to avoid the last photo! She understands that, perhaps in some small way, another child may be encouraged by her story.  And that is really why we share.
This was Malia's seventh surgery since coming home and it was by far the most traumatic for her.  She HATES being put to sleep and in true Malia fashion she put up a good fight, yelling and screaming at the top of her lungs! 
The surgery went very well, however, it took longer than expected.  As a result, the surgeon and anesthesiologist agreed there was a risk of Malia's airway swelling and closing up if they removed the breathing tube, and re-intubating (not even sure if that's a word!...pardon my non medical jargon! lol!) would be very difficult due to the nature of her surgery. As a result, she was moved directly to the PICU to be closely monitored.  She was kept in a drug induced sleep for the first 24+ hours. 

Taking the tube out took 3 dozes of sedatives, and many strong hands.  Malia fought with all her might, even though her hands were restrained, almost hitting the doctor below his belt!  And almost giving a few nurses a black eye!  You really have to admire that kind of tenacity!  Who can do that while being restrained?!?  The nurses and doctor all marveled at her incredible strength.  And mama was once again left with shaky knees! 
Malia tried to watch a movie a few times, but promptly zonked out each time!

She wanted her teddy tucked in close after the tube came out.  At this point she still had a nose trumpet, and two IV's in her little hands.  A few hours after removing the tube, the nurse attempted to give Malia some Tylenol.  The poor girl once again fought with everything in her.  I soon realized we were dealing with some major trauma and our wonderful nurse volunteered to leave us alone for awhile.  It took a very long time for Malia to let me touch her and hold her. It dawned on me that in my attempt to be by her side, in my attempt to help the medical professionals do what needed to be done...I had lost her trust in me!  My heart still hurts knowing I did this!
Finally, she let me rock her.  We rocked for a long time...and then she was finally able to explain why she flipped out at having to take was white and in a similar syringe as the sedative they used to calm her as they took out the tube!  She was NOT going to let them sedate her again!!

The crying, screaming, flailing with both arms and legs happened again as each IV was taken out. 

In true tenacious Malia fashion...honestly, she does everything with intensity!...she was released from the hospital on Saturday...a full day or two earlier than most children would be released.  Her surgeon was amazed at how quickly she recovered, and how well she was able to eat with little pain.
To give you an idea of what a tongue flap actually looks like....

Yup!  Poor girl! But somehow, she learned to drink her food and talk!  All with very little complaint or self pity.  She really is a trooper and continues to amaze us with her strength!
Tomorrow we head back to the hospital for another surgery.  This surgery will be to release the tongue.  We expect this to be day surgery, but were told to prepare to spent the night.  We should have a better idea tomorrow whether this graft was successful or not.  It looks good to my untrained eye, but if I'm not mistaken I think I do see a bit of a hole remaining.  Here's to hoping and praying that there is more than enough tissue to move on to the next procedure...the bone graft!


Anonymous said...

I always like Canadian blogs! Even though we're provinces away you feel much closer than the Americans... I am still young but I hope to adopt in the future and of course I'd have to go through the Canadian government following their procedures not the ones talked about on American blogs.

Anyway. I'm sure this blog will be a treasure trove to parents adopting a child with the same condition as Malia! All the blogs I've seen have educated me in different disabilities and what care they actually entail because some seem to have less care than I would have expected and some need more (but of course every child and diagnosis is different and comes with different complications)!

Marie said...

Hi Anonymous! Thanks for stopping by! I too enjoy Canadian blogs. There seems to be a ton of US blogs, but sometimes the info simply doesn't apply to Canadians. Some day, perhaps Canada will have the adoption resources that the USA has.