Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Sunday, December 21, 2014


Being the season of Advent, there is a lot of talk about anticipation.  As we count down to Christmas, we anticipate the break from school and work, the time with family and friends, the, children enjoying the tradition of Santa Claus, and most importantly, we anticipate the birth of our Savior, Jesus Christ.  Rooted in anticipation are two things that aren't always easy - expectation and impatience.  When we are in a season of waiting, we know something will happen at some point, but the waiting to get there can be difficult yet exciting at the same time.  Things can also change quickly which makes that anticipation even more stressful.

Meagan has been doing wonderfully at school.  She started to ride the bus a few weeks ago and for the most part she loves it! She does not like the lift to get on to the bus - but I expected this.  She doesn't like swings or carousels and things like that - so I anticipated that when her chair was on the lift, she wouldn't like that too much.  I was right - she cried, she said "no off!" and was very unhappy.  As soon as she was secured on the bus, however, she was ok.  When she was securely in her destination, she was at peace and even waved to me out the window.  I was so happy to hear this.  The bus has also helped transitions at school.  When Meagan gets on the bus, she knows she is going to school.  She knows she is waiting to get out and see her teachers and friends and get started with her day.  So it has helped her to get excited about her destination and have joy upon entering her classroom of familiar faces.  This is how I found her on Wednesday when I went to pick her up:

As you can see, she was definitely NOT missing me or upset :)  A classmate had brought in pizza, so, like any kid would, she opted for the pizza instead of what I packed her for lunch.  She was sitting in her special chair at the table with all the other kids and being a complete ham - typical silly Meagan making her friends and teachers laugh.  I was so happy to see this and it cracked me up that she was so proud of herself for sitting like a big girl and sharing lunch with her friends! 

We left school anticipating a big weekend.  Our dog, Dudley was having surgery that Friday.  I had a symphony rehearsal and then a concert on Saturday night.  My parents were getting in to town for the Christmas holidays, and the older girls had a big Christmas show they were dancing in downtown Saturday night and Sunday.  Not to mention the normal things of keeping up house, finalizing Christmas presents, preparing food and caring for the kids' general needs and everything you do in normal family life!  

As I was going through my errands the next day or so, I started to notice this on the back of Meagan's head: 

Some fluid was gathering around the top of her upper valve and was tensing up.  I watched it for a bit and when it didn't go away from her being upright, I decided to email Dr. R's PA and just bounce it off of her.  She and I agreed we should watch it but with her basically being ok to see how she did being upright another day and if it would help the fluid to drain naturally.  Meagan does some funky stuff sometimes, and she wasn't totally off behaviorally as of yet, so I was fine with the plan.  Plus, I knew Dr. R was going out of town that day and was hoping the problem would go away.

As the next day or so went on, Meagan became increasingly sleepy.  She wasn't talking as much as she used to.  And even sitting up all day and sleeping upright, the fluid pocket was not going down.  I took her with me to take Dudley to the vet for his surgery and she barely talked about any of the animals - she usually always talks about the animals.  I decided to take her to run one last errand with me because I was going to a place with toys.  Typically she sits in her chair and is pointing at everything asking me what things are, what color things are, and showing me all the toys she really wants to see.  As I was waiting in the check out line, she had her head back and was just staring.  I knew something wasn't right.  When I looked at the back of her head, I saw this:

It was obvious the fluid was spreading down into her neck.  Even her open defect on her skull was starting to get hard.  Rock hard. I knew she had to go in.  I made arrangements for the kids and got everything laid out for their shows on the weekend anticipating we would probably be staying at the hospital.  I also called Dudley's vet and made plans with her to take care of him post-op so I could take Meagan in.

Once we arrived at the ER, we went from check in to being in a room with all scans..etc. done in about less than 15 minutes I would say.  It was apparent something was wrong.  Even anticipating Meagan having problems arise, I'm always amazed at how fast things can change.  I couldn't believe this girl in the ER was the same happy goofy girl I had just seen 48 hours before.

The doctor came in and said that her shunt series looked stable (which is good - that would show any kinks or disconnections similar to what happened to her in September).  Her CT however showed her right ventricle looked bigger.  For Meagan any change is huge for her - she is extremely pressure sensitive - but with the fluid shunting down the outside of her valves, it made sense to hear the right vent was bigger.  Something wasn't right.  

With Dr. R out of town, it did add to the stress.  Not that the other Neurosurgeons in the practice aren't good - they are.  The whole practice is amazing.  But, that said, none are Dr. R.  He knows her so well, knows me so well, and being that her case and her shunt system is so complicated, it made me a little nervous knowing we would be dealing with another NSG.  But in my gut I knew she may need surgery.

The doctor on call was Dr. B - we have seen him for a consult a few times in emergencies and he is actually Meagan's little friend Claire's neurosurgeon.  So if anyone had to be on call, I was glad it was him since there was at least some sort of past interaction.  Dr. B said that he would let Meagan sleep the rest of the night (it was already extremely late) and the first thing they would try would be to turn down her programmable setting to the lowest possible setting (meaning the fastest flow).  He wanted to see if the fast flow would drain the excess fluid out or help what could be a little clog move and let things run smoothly again.  He said if that didn't work he would need to open her up to check the proximal catheter (the one that goes into her ventricular space in her brain) because he suspected it wasn't working if it still didn't drain.

So we waited. Through the night, I would wake up and check on Megs - she was so sleepy and not feeling well.  She even slept through her first stick when they did her IV.  Anyone who knows Meagan knows that is NOT normal for her at all.  Once morning arrived, Dr. B came and said he re-looked at the scans and being that the fluid hadn't improved she was going to go to the OR.  Within about half hour, she was upstairs in the OR and I was waiting for news.  

I got word that the proximal catheter in fact wasn't working.  When he tapped it there was no flow and so it had to be replaced.  I had a mini panic attack because I remember last summer Dr. R talking about that very catheter and the difficulty it would cause to replace it because of Meagan's vents being so tiny.  He had said to remove that would be risky because there was a chance that a new catheter wouldn't be able to be reinserted due to the vent size - which of course, would be bad.  But then I remembered Dr. B saying now that her right vent had slightly enlarged due to the malfunction - so it could have actually been a blessing in disguise.  While it was bad Meagan was in pain and her shunt wasn't working, it was also good that all of that led to her vent being a bit bigger so Dr. B could replace that part without the risk we had talked about last summer.  All things for a reason I say!

Resting comfortably - still lots of swelling 
that needed to go down

Once Meagan came back from surgery she was resting comfortably.  She slept a lot of course and did not want to move her neck toward her shunt side at all.  Understandable.  Dr. B saidhe anticipated recovery to go smoothly.  He showed me the staples he used because her little skin is so thin, it's hard to stretch it back over her valve so he said he secured it very well to ward off any leaking or risk for infection.   

The night was a little chaotic.  Meagan was fine- rested ok.  But I had my symphony concert and the older girls had their celtic christmas show so coordinating everyone from the hospital was a little challenging.  It was also challenging emotionally to leave Meagan to go play my concert.  I had to go - it was the day of and I would not leave my fellow musicians without a sub, I needed my last paycheck before the end of the year, and music is my outlet - it's my one passion and joy outside of my family, so I knew it would be good for me to go and complete my concert.  I anticipated it would be really tough because in Meagan's 15 hospital stays, I have never left her. Ever.  But I also knew she was in great hands with all the Neuro nurses who now know her (and me) so well.  

The girls' show went well, my concert went well, and I got word from the Vet that Dudley was doing ok and resting comfortably with her on his pain meds. (We are a mess!)  The Christmas music and hymn music we played in the orchestra last night lifted me up and really helped - it was wonderful to bring the gift of music to other people and turn my stress and emotions about Meagan into something positive to help others find joy in this season of waiting.  I must admit however - as soon as the last note was completed, my mind shut off and was completely focused back on Meagan.  I headed back to the hospital to find she had done very well, and went to bed snuggled up with her.

Meagan awoke today pretty well.  She is still tired and she still wants to not move, but, she is not crying in pain.  We are keeping meds in her to ward off any spikes in pain and it seems to be working so far.  I have seen a few smiles and she has started to talk to me again.  Dr. B came and looked at her site and her fluid pockets and is happy with how they are starting to relax.  He said our goal today is to get her up and moving.  Take her downstairs to eat.  Take her around the hospital to look at all the Christmas decor.  Take her anywhere here - but just get her up and moving so she stops avoiding moving that side of her head and will be back later to discuss discharge plans and timeline.  

In a way, being a hydro mom puts me in a perpetual season of Advent.  I am always anticipating.  The good, the bad and the ugly.  When Meagan is happy and thriving, I'm anticipating the next time something will fail or she will crash.  When she is in the hospital or her shunt is not working correctly, I'm anticipating seeing my happy goofy girl again and all the new things she will accomplish.  But that is just life.  Advent is really just a little window in to the grand scheme of our journey here on Earth.  It is a focused reminder that through all that happens in our lives, there is a greater goal.  There is a peace and joy that will come.  Through the waiting and anticipation we experience both the joys and the sorrows of life - but then how else should waiting be? If anticipation isn't hard at times, the end result won't be as sweet.  

 As tough as it is sometimes anticpating the "when" (not the "if") of things that happen with Megs, I would not change one moment - because all of those moments make up who Meagan is. All the moments of anticipation and waiting are learning times - they ultimately lead us to her joy.  After our crazy week and weekend, I am looking forward to seeing my girl back to herself and getting home to enjoy this last week of Advent with our family as we anticipate the greatest gift of all ...... and experience the joy of Christmas.

Meagan enjoying a Frozen balloon sent by
 some of my coworkers 

Meagan is all smiles for a visit from Daddy

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