Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, April 9, 2013

Chiari Decompression Day 1

Meagan's surgery day finally arrived. Some people asked how I was so calm leading up to it, but I honestly was more than calm - I was relieved.  It's a funny thing to "look forward" to a surgery.  It's not something I would ever "choose" for my child, nor want, but when it is a necessity for them to feel better and hopefully move forward with their life, it becomes a rather easy thing to deal with... for me at least.  The waiting was really the hardest in the last few weeks because it seemed like an eternity.  To wake up today and know we were finally taking action to hopefully bring some relief to Meagan felt comforting...and right.

The day started rather early.  Meagan was NPO (no formula/food) starting at midnight.  She typically sleeps through the night, or at least until 5am.  Of course last night she woke up at about 2am, but could not have a bottle since we were past midnight.. she was not a happy camper.  We were told between midnight and 4am she could have some clear liquids, so we attempted some Gatorade in a bottle, but of course she didn't want anything to do with that.  Hence, we had a screaming fussy baby from about 2 o'clock this morning all the way until she was taken back for surgery around 8:45am.

Someone was tired out from crying all morning

Once we arrived at the hospital Meagan was checked in, had vitals taken and was taken down for a CT scan.  Dr. R wanted one last good picture to double check what he was doing and where he needed to work on Meagan.  Once the CT was completed we went back upstairs and waited for the nurse to come in with Meagan's pre-op meds.

Seemingly unamused by the morning cartoons

The nurse came in, went over our questionnaire again, and gave Meagan some Versed to help calm her down before she was taken back.  The change after the Versed was almost instantaneous.  She went from crying, fussy and untrusting to happy, smiley and relaxed. It was nice to have a few moments of smiles, even if goofy, before she had to go for surgery.

Before Versed

After Versed

 Dr. R came in.  He pulled up Meagan's MRI pictures again to go over in detail exactly what he was going to do.  Dr. R told us it would be around 4-5 hours for surgery, give or take.  He said we could walk around the hospital and bring our cell phones with us for a few phone calls from the OR, which would keep us updated on how she was doing. We said our goodbyes to Meagan as Dr. R finished explaining the procedure to us and then the wait began.

Daddy getting some work done while we waited

We took a few walks, got a few bites to eat, caught up with friends and family and also just did a lot of sitting.  And a lot of waiting.  The OR phone calls came and went - all thankfully reporting that things were going well and she was doing ok through the surgery.  Finally just before 1pm we got word she was out and moved to the ICU.  We had to wait a little bit in the waiting area while the nurses got her settled down but in a fairly quick amount of time, we were allowed to go in and see her.

Not feeling well :(

A bear from mommy and daddy for being brave

Overall Meagan looked pretty good but I could definitely tell she was in pain.  She kept waking up out of her semi-sleep and crying out or whimpering.She barely opened her eyes except when the nurses had to check her pupils and even then it was with resistance   She needed more pain meds, but the only issue was her heart rate and respiratory rate.  Hers are naturally on the low side without any meds or trauma, so with any sort of depressant (ie: the pain killer) in her system, it tends to exacerbate this problem.  At the same time, we had to get her settled down because she was obviously uncomfortable and hurting.  The doctors finally figured out a cocktail of Tylenol, Valium, and a hefty dose of Morphine to help calm her down.  For a while they were walking a fine line of medicating her, but also holding back to keep her vitals stable, but finally after a little while, they were able to figure out safe doses to give her leaving a number of minutes in between each push so her body could tolerate the influx of medication.

Dr. R came by to see us later in the afternoon.  He first came in with something that looked like a piece of paper - what I soon realized is that it was a picture of Meagan and all her sisters.  We had given it to him in a Christmas card along with a few pictures of Meagan alone.  Dr. R had grabbed the picture from his office and brought it with him when he came today to "bring Meagan some cheer."  I thought it was very sweet and once again reinforced why we love Dr. R so much!  We set the picture in Meagan's crib so when she starts to wake up, she can see her sisters.

Dr. R went on to explain how things had gone that day.  He said the surgery had gone very smoothly on his end.  He said everything had gone as planned - he was able to remove some of the bone and open up the area enough to give her some relief without having to open up the dura at this time (which is the second part of the surgery too dangerous for her right now).  He said an ultrasound showed the crowding in the area was temporarily alleviated and for the time being the second part of the surgery could be held off until she gained more weight.  He said hopefully this gives her some relief as we move forward with recovery.  There is no guarantee of this,however, as a higher success rate follows doing both parts of the Chiari surgery, so like with anything Meagan, it is a 'watch and see.'

So far, after figuring out her new med cocktail, Meagan seems to be resting comfortably this evening.  She occasionally wakes and whimpers in pain but the nurses are always right there with her next dose of pain medication and administer it promptly.  She will stay in the ICU tonight so we can make sure her vitals don't dip anymore and so she can receive the round the clock care she needs to make it through her first recovery day.  If she seems to stabilize overnight and does well sleeping on her own, and as long as her blood work also comes back ok in the morning, she may be moved to down a Neuro room tomorrow and out of the ICU.

Daddy telling Meagan "It's ok" 

Meagan is still on clear liquids, IV fluids and a catheter, so no bottles of pediasure as of yet. I can't hold her yet either as her incision is still very tender.  They are keeping her positioned carefully so she can stay upright and allow herself to start healing correctly.  I'm hopeful that tomorrow at some point I can hold her, or at least crawl into the crib with her to give her some mommy snuggles.   Meagan certainly came through today brave as ever, but then again, I had no other expectation   She may be tiny but she can pack a punch. We are looking forward to (hopefully) a restful night and we will update tomorrow with how miss Meagan is doing.  If anything, her bravery today and all the sweet gifts she received showed her she is one loved little girl - and reinforced what a gift she is to all of us.

A gift from her hydro buddy Meghan

Finally resting peacefully


  1. Definitely sending you some healing prayers and hope that everyone gets a lot of rest tonight. I'm glad the surgery went well and I hope it brings her some relief. Also, you gotta love that versed. They gave it to Ellie once and she was so hilarious.

  2. You guys are so wonderful! You are all in my prayers! God bless you all!