Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Tuesday, December 30, 2014


No.. it's not snowing in Atlanta again.. yet.  But it does seem that way in our lives at the moment!

As you know Meagan had her revision a week ago Saturday.  She did well and came home a happy camper.  We had a great Monday night, and Tuesday started out well. She was happy the whole day, scooting around and getting interested in all the decor.  I noticed her incision site was starting to swell up a little at the top, but simply chalked it up to post op irritation and decided to just keep her upright for the next two days to hopefully let gravity drain the fluid pocket a little on its own.

Little miss loving her bath snuggles

Wednesday was Christmas Eve and everyone was excited.  The girls were feeling the anticipation of Christmas Day, and we were all ready to have some good family time after Meagan's unexpected hospital stay. We went to Vigil Mass and got home ready to eat dinner and wrap last minute presents.  Meagan was really tired which I found odd since she had been doing so well and she fell asleep.  As a matter of fact, she stayed asleep transferring from the car to inside, and then even when I moved her on to her little chair.  I had a gut feeling something was brewing.  Nonetheless, we took our Christmas photo of the girls and went along with our plans for the night.

Meagan sleeping through photos? Something was off..

Christmas morning came and the kids all got up early of course to see what Santa had brought.  Meagan was still asleep so we let the big kids go downstairs.  I figured she must need the sleep so we just let her rest for a while.  When a few hours had gone by and the older girls wanted to open presents, I decided to go wake Meagan up and bring her downstairs.  It took her a while to get over being groggy but then she perked up a bit.  We opened presents and let the girls play with their new toys for a while.  Brian was cooking up a storm in the kitchen and my dad was playing with Meagan.  When he was holding her, I noticed her fluid pocket in the back was large again.  "Oh no" I thought, especially with her having been so sleepy..... but Meagan seemed to perk up again and enjoy opening a few gifts so I figured we would just keep her upright and see if it went down. 

A little groggy at first

Perked up a bit and opened some gifts!

Tired again and site swelling up

At dinnertime, Meagan slept again - and if you know Meagan, she will not sleep through dinner especially when she hasn't eaten in a few hours.  After dinner when I moved her I thought I noticed some wetness near her staples.  I wasn't entirely sure, but with her behavior that day, the new swelling, and only 5 days post op, I knew she needed to get checked. 10 pm Christmas night, we arrived at Children's ER.  Her shunt site was huge - puffing out and red - and she was still sleepy and when awake, very fussy.  In the ER, we saw one of the fellows who works with Dr. R's practice.  He was nice but it's so hard to tell someone Meagan's story from the beginning and actually have them grasp her case.  As a first step, the doctor (Dr. S)  decided to drain off some fluid by doing a shunt tap.  Typically we have avoided these because of the risk of introducing infection - but, she was already leaking fluid and the reason behind that was mostly because of how swollen the site was - pushing fluid out of the incision.  Dr. S collected some of the fluid for culture and Meagan was sent off for her scans.

So sleepy and not well

A little while later, Dr. S came back in to talk about the scans.  Her vents looked slightly enlarged and they could see the external fluid pocket as well.  When we rolled Meagan over to look at her incision site again to monitor the swelling, there was a big ring of fluid on the sheet.  I knew what it was - more CSF... and it wasn't just dripping this time.  Of course Meagan was going to be admitted so we could wait out the cultures and to see if her behavior returned to baseline.  We got settled in our room and luckily several of the nurses who know us well were on shift.  Times like these, it's so nice to see familiar faces and really caring people.

CSF really starting to leak more

Once Meagan was settled in her room, we talked to Dr. S once more.  He said we would watch her behavior and her swelling and hopefully the leaking would subside.  He also reprogrammed her programmable valve to the lowest (fastest) setting to help pull any of the gathering fluid down through the catheter and second valve.  Meagan had also started to spike a 104 fever so he wanted to make sure we watched the CSF cultures to be sure there was no infection.  He also put a head wrap on her to hopefully put some counter pressure on the swollen area to force the fluid back in and down the shunt.

Meagan kept her head wrap on the entire day.  By late afternoon she was becoming irritable and pulled a lot of it off - and within minutes of pulling it off, her incision site started to swell again. Her fever had gone down but she didn't act well. We made sure to keep her upright and treat the incision with antibiotic ointment.  It continued to leak.  Then the on call Neurosurgeon, Dr. B, came and decided to put in extra staples and treat it with more ointment and gauze.  He tapped it again because since she kept leaking he needed to re-culture the new samples.  Once he got the sample, he added several staples to the area that seemed to be the culprit, and placed ointment and gauze.  We also put Meagan upright again to help things hopefully pull down with gravity.  He said if the site still looked red in the morning he would take her to the OR to externalize her and let everything heal up - but if we didn't have to, he wanted to avoid it for the time being.  Since Meagan was getting over a viral cold, she had a lot of congestion and he said her chances for getting pneumonia would be a lot higher going under anesthesia with those conditions.

By Saturday evening, things took a bad turn.  Meagan had gone from sleepy and irritable to inconsolable.  She was thrashing her head back and forth constantly.  She was trying to talk to Brian, me and the nurse, yet no words would come out.  She would try to form words and all she could say were random noises or sounds.  She had lost speech.  Then when we tried to pick her up I noticed she felt limp.  Even when Meagan is uncomfortable or mad, she has never stopped talking or lost any muscle control.  When I looked in Meagan's eyes, they were constantly shaking.  Not like a seizure, but constant nystagmus.  Nothing seemed to relieve her pain, not even a good dose of Motrin or pain meds.  Something was happening that was more than "just pain."  The speech, loss of muscle control, plus noticing her incision was STILL leaking fluid led the nurse to call Dr. B back in.  Usually I am pretty even keeled in Meagan's care - even through 40 minute seizures, or 8 hour brain surgeries...I just have a way of dealing with it. But this time, I admit, I was worried.  I was probably the most concerned I have ever been about her.  Something was very wrong, and I didn't know how it was going to turn out.

Meagan leaking...again....

..this time all the way through to her mattress.

Not well at all

Luckily, Dr. B responded, and responded with swiftness.  From the phone call the nurse made, to bringing Meagan into the OR was a total time of about 30 minutes.  I appreciated him moving so fast so Meagan didn't have to endure her discomfort any longer than absolutely necessary.  Dr. B said since she was in bad shape, he was going to externalize her shunt - put in an EVD (similar to what Meagan had last June).  That way she could drain openly, we could hopefully stop the leak for good, and we wouldn't be trying to figure out her internal shunt issue while she was obviously in distress. It took just over an hour for the surgery and luckily, Meagan seemed to have no complications with the anesthesia and her respiratory virus and was able to come straight back to the Neuro floor instead of PICU.  She rested comfortably on pain meds while the EVD drained and we waited overnight.

Dr. B checked in on Meagan in the morning - he was happy she was resting comfortably and that her thrashing and pain seemed to have subsided.  She slept the whole night and in the morning, she woke up and smiled at me.  I noticed the shaking in her eyes had slowed significantly.  I knew we were going to get her back over the next day or so.  I have honestly never seen Meagan in the state she was that night.  I don't know what went awry in her little head, but something happened that completely made her whole body limp and caused the scary symptoms.

As the day went on, we started to see more and more of Meagan's personality come back.  She slept a lot, but, when she was awake she would smile or lay there calmly.  She didn't say much, but I was just glad to see her joy back in her face.  Dr. B stopped by again and said the issue was probably that top catheter - again.  Even though the shunt was "working," it was only working in spurts.  Of course for Meagan producing so much fluid, working in spurts isn't "working."  He talked with us a bit about some options and said a good next step would be to get a detailed MRI to make sure they aren't missing something and go from there.  I agreed and an MRI was scheduled for the next morning.

Meagan drops a ton of fluid in a very short time. 
 I guess she goes big or goes home.

Today Meagan made it through her sedation for the MRI just fine.  The results are not much different than her previous MRI, but there are a few small things we need to discuss with the on call tomorrow, or wait and talk about it with Dr. R in office once he has returned.  Overall, everything looked stable so Meagan was slotted for surgery tomorrow morning. To help them place the catheter a little better, they have decided to clamp Meagan's EVD tonight at midnight and when it starts to get too much, drain a little off and re-clamp.  It may not be entirely comfortable for her, but the effort is really to help blow up her vents a tiny bit more for a safer catheter placement.  Otherwise we will be right back where we started.  It's a little tricky considering she's a pretty massive fluid producer - but unfortunately we will just have to figure a way to balance it all so she's at the best pressure and the most comfortable at the same time.  Thankfully her two valve system will stay in place so we can use that to continue to monitor her situation.

It has been quite a crazy week.  In addition to Meagan's issues, we got news that we have a dear family member who was diagnosed with a serious illness.  It was quite a shock but we have faith that it will be overcome.  We would please ask for prayers of strength and healing to be sent their way.  When I can reveal more details I will, but for now respecting their privacy, extra prayers for this person would be extremely appreciated!
The vet also called with Dudley's full report - it's the worst kind of cancer and the worst grade - which means palliative care and lots of snuggles until his time comes.  I am most sad for the kids.  He is such a wonderful dog and so patient with them.  Below are a few pics following Dudley's surgery last week (after Meagan's revision but before her current stay) when Meagan was exploring his silly cone and trying to figure out how to still snuggle her sweet dog.

Dudley after his surgery

How do I get in there?

Hmmm.. not going to work Megs..

It always seems like the negatives come in waves.  And then there are times it feels like they just snowball.  One after the other after the other down a seemingly never ending mountain.  But I think this happens on purpose.  I think this happens to distract us from what we should truly be focusing on in life - God, faith, and joy in our families and friends.  When things snowball it is so easy to get caught up in the sadness, the worry and lose sight of God's goodness in our lives.  Multiple challenges try and move us away from what we know is a good and attempt to bring us down. And it is easy to fall into that trap.  But if we stay focused on the positive - the everyday joys, the faith we hold inside, and the God who loves us no matter what, snowballs melt quickly into clear sunny views of tomorrow's goodness, no matter the trials that lead us there.  If Meagan can see that after all she's been through this week, we can too.

Starting to be more herself tonight!  
Ready for surgery in the morning.

Thanks to all for the prayers and support these last few weeks! We will keep everyone updated on Meagan's surgery tomorrow as soon as possible.  

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