Snowball: Post Op News

The night before surgery was challenging.  Dr. B wanted to clamp Meagan's EVD (meaning he would stop it from draining) as much as she would allow.  He was going to let her reach a pressure of 20 for five minutes before the nurse would come in, drain off some fluid to give her relief, and then clamp it all over again.  When the nurse told me the plan, I did laugh.  Not because it's silly - I get what they were trying to do.  Meagan has slit ventricles, so they were trying to puff up her vent overnight with more fluid to make catheter placement safer and more successful.  I laughed though because Meagan produces a ton of fluid - the poor nurse would be in our room every ten minutes letting the poor kid drain off.  I was pretty close with my projection.  Meagan would creep up to 20 over 10-15 minutes... and then suddenly would shoot up to 25, 28, 32, 49.. you get the pattern.  The nurse would run in, drain her off, get her more comfy and stable, and then we would start the whole process all over again.  It was definitely a very tiring night!

Surgery was scheduled early, thankfully.  Meagan did well with the anesthesia and Dr. B was able to give us a report afterwards.  Of course he tried to get the catheter in the larger fluid space towards the back of Meagan's right ventricle so it would be most successful.  He flushed her distal end and it needed to be cleaned out.  Then he flushed the proximal he had just placed and it worked ok.  He was about to close her up when he noticed pools of fluid coming back at him.  He was shocked as he had just tested the catheters so he tested the valves.  The valve in Meagan's head was a bit finicky so he replaced that one.  However fluid was still pooling.  Upon closer investigation, he realized the tiny bit of catheter between the two valves (that connects them in succession) had a hole in it.  Fluid was pouring out - or in his words, squirting.  He took that part out, replaced it with a new catheter and closed her up.  Because of the catheter hole, Meagan had to have another small incision in her neck.  I know it's necessary but I just hate that because it's such a sensitive and pliable area that it cannot feel good at all.  I was glad Dr. B had found some of the problems to fix and from then on we knew we would have to wait and see how the catheter placement panned out.

Relieving pressure - a constant battle all night

Meagan did pretty well through the first post op night.The neck incision is so sensitive and has now been opened three or four times, so I did ask the nurse to call the neurosurgeon for one dose of a heavier pain medication.  Typically post op, I let them switch her immediately to Motrin so we don't have any of the heavier stuff, but with that neck, I know it is incredibly sensitive and painful. I didn't need her to have morphine but I did want something in between to bridge the transition from surgical meds to Motrin. The on call prescribed one dose of Lortab to take the edge off. The nurse and I decided the evening would probably be the best time to give it so she could rest comfortably as the surgical meds wore off.  Meagan got her seizure meds and her Lortab and slept comfortably.  I could definitely tell her neck was bugging her - she didn't want to move it or roll on that side, but at least she had appropriate pain control for the night.

As the day went on, she continued to sleep.  Dr. B came by and was happy with her incisions and the result of the surgery so far so we agreed to watch her and let her rest.  She slept and slept and slept. Throughout the day her nurse and I tried to wake her up.  She would either yell, get upset, or sometimes would say, "No wake up! Say goodnight!"  It was kind of hard not to giggle at that response   I was honestly just happy to hear her speaking fairly well even if she was mad.   Finally around 1700 she woke up for a little bit on her own.  She was calm and happy.  She asked to look at my eyes, touch my hair, hold my hand... then she asked me the color of my hair, the color of her hair, eyes, etc...the typical Meagan "20 questions."  After about 15 minutes, she grabbed her blanket again and put her pacifier in and started to doze off asleep.

Typically, sleeping this much (two days now practically) after surgery isn't normal for her - especially with shunt revisions.  Her last revision she was down the hall at the hospital music therapy class within 15 hours of her surgery.  But I do have to remember this time was quite different.  She's not only had 3 surgeries since a week ago Saturday, but this past Saturday night was quite an ordeal for her.  I'm sure her little body is just tired and really needs the extra rest. She was comfortably resting until about an hour ago.  She was trying to talk to Brian on the phone and I noticed her speech was becoming slurred again.  Her eyes were shaky again.  She still had head control, so I was relieved.  But we will be watching her closely tonight to make sure this isn't Saturday night repeating all over again.  Ugh.

She is scheduled to get two more IV doses of antibiotics and we will talk to the neurosurgeons in the morning to talk about a timeline for going home.  I'm hopeful that it can be sooner than later as long as she wakes up tomorrow happy and comfortable.

Of course as we sit here, Meagan is yet again spending another holiday/celebration/birthday in the hospital.  My husband and I were almost laughing about it the other day - going over the last year, we realized that Meagan has had emergencies or surgeries on our 10 year Anniversary, our summer vacation, her own 3rd birthday, the week before Thanksgiving, the week before Christmas, Christmas Day, Brian's birthday, and now heading in to New Years Day.  We joked that maybe we shouldn't tell Meagan of any special celebrations, birthdays or holidays anymore! She seems to have a knack for keeping those on her 'radar' when she's about to have a problem manifest.

At home, things are going well.  The girls are fairly well distracted and keeping busy.  Brian finally got to go out for his birthday dinner at our usual Mexican restaurant.  (He had waited to see if Meagan would come home in time to go).  The girls got to go on a silly shopping trip with Daddy where they all got to pick out "just for fun" glasses.... Brian texted me their pic with the caption "sass"... Uh, yea.  I think he's spot on.  haha

Celebrating Daddy's birthday dinner - finally.

Silly and sassy.. 

It's not ideal of course to be sitting here on New Years Eve.  I would of course much rather be at home with my whole family together.  I know Brian has made an awesome array of appetizers for everyone and we would be watching Xavier basketball and New Years Eve celebrations on TV.  It would be fun to stay up with my all of my kids and watch the ball drop and to visit one last night with my parents while they are here.  It would have been fun to make it to Florida to visit Brian's family and spend time with them as well.  But I know they are all having a good time together and that Meagan is in the best place here.  The joy of an iPhone is that I get to see what's going on even if I can't be there, so I can still somehow feel involved.

Brian's an amazing cook - he had ribs smoking outside for dinner! Yum.

We are hoping Meagan perks up more tomorrow and we can start moving forward.  2014 has been quite a year - a lot of trials and tough times both physically, mentally, emotionally and financially. A lot of tough decisions.  A lot of shocking news. A lot of trials for the family.  Some of those struggles are over, some are not. Some are but may have lingering effects. There were a lot of great moments and memories too, for which I'm thankful.  I'm ready for a new year and a new start - and hopefully a lot less hospital stays/surgeries for miss Meagan! But I also am grateful for 2014 - all of it - because nothing that happened, no matter how challenging it was, is regrettable.  Every event and trial led us to where we are now and gave us the strength to go into tomorrow with a smile on our face.

Happy New Year's Eve to our family, friends, and Meagan's followers.  We hope everyone is having a wonderful and joyful time with their own families. Hopefully we have good news tomorrow about getting Meagan home.

Reilly being such a big girl - helping Nanny and 

Pop Pop make pancakes for the crew!

 When you're bored in the hospital... you take funny pictures and caption them.

Snowball

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.  

Anticipation

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

Thanks and Giving

Our week started off a bit shaky - as many of you know, we had a little "scare" with Megs early in the week.  At first, I blamed it on storms.  It was very cloudy and rainy and Meagan was very out of sorts and extremely tired.  She is so pressure sensitive, we have learned that when weather changes, or pressure systems come in with warmer or colder weather, Meagan reacts, and typically reacts dramatically. We normally have a "weather day" as we call it, and then she's back to her bubbly self the next day.  I became concerned on Monday however when she seemed to not have recovered from the weather change.  She wouldn't wake up on her own, and when I woke her up for PT, as excited as she was to see Melissa, she was very tired and out of it.  She ended up even falling asleep in the middle of her PT session.  As the day went on, she was either fussy, sleeping, or when in a decent mood, extremely wobbly, off balance, and her speech was slurred. We were also watching a friend's child that day, and when the mother came to pick her up (who also knows Megs very well), and commented how Meagan was definitely not herself, I knew my concern was well founded.

Wouldn't wake up for anything

On Tuesday, we were hoping she would wake up better.  But she didn't.  She continued to be lethargic.  She asked to go to sleep constantly or to go to her crib.  This is unusual because she typically fights going to bed.  After being awake a total of 48 minutes on Monday, I became concerned Tuesday when she seemed to be following the same pattern.  I also noticed the catheter in her neck seemed extremely twisted and kinked.  I was hoping we weren't heading for another disconnection, as had just happened on her birthday in September.  She was acting awfully similarly to that day and it was worrisome.  Every time we tried to wake her, she simply asked to go back to bed.  Her tried and true test - Irish dance class - didn't even prove to work that night.  If she's just grumpy or tired, she will typically perk up for dance class and then crash afterwards.  But she didn't perk up much at all.  She was very tired and wanted to go to sleep or had slurred speech while trying to snuggle with the dance parents.  I was convinced we were heading in to the ER that night.  I went ahead and emailed "Elsa" Blair (Dr. R's PA) and she told us to come in the next day and they would work Meagan in the schedule.

Wednesday morning, I had to wake Meagan up again.  We headed in to Dr. R's office and he did a thorough exam.  He noticed Megs was not herself and was concerned as well.  Luckily, he was confident that her shunt had not disconnected but was concerned with her behavior.  After checking her out, Dr. R concluded that it was not a shunt emergency, but that she was on "high watch" because of past occurrences.  He told me he was on call the rest of the week and weekend so if she did not turn around in two days, to come in and he would expedite her to a CT or MRI and go from there.  As we went home I was hoping it was just a few off days or a kink in the shunt because we really didn't want Meagan to end up with another surgery.  When your normally active and funny child is mostly like the picture below, your radar definitely goes off and you hope for the best.

As Thursday approached, I was hoping for a turnaround.  We asked friends and family for some extra prayers and were hoping the previous 72 hours were just a few "brain days" and we would see our old Megs return. And thankfully, that's exactly what we got.  Meagan woke up in a good mood. Even better, she seemed more happy, more aware, and more like her old funny self. She was still extremely tired, but when the girls were having hot chocolate and she tried to grab their spoons and "feed them"... I knew Megs was on her way back.

Meagan was a lot better Thanksgiving Day - but still extremely tired.  

She slept for about 5 hours in the afternoon!

We had a great Thanksgiving day with my family and some of our dear dance friends, and Meagan continued to improve.  She still slept a bit more than normal, but not nearly as long, and when she was awake she was much more engaged with her surroundings.  As the weekend went on, we were having a wonderful time - spending time with my parents, taking the girls to the dance studio to practice, and starting to get out our Christmas decorations.

Tonight, as we got out the tree to put up, Meagan completely freaked out.  She was not ok with the change in our living room and had the biggest fit.  Not even coaxing her with lights or pretty colors, or even Pop Pop (whom she will usually do anything for) could get her out of her fears.  For some reason (which we will never know), Meagan did not like the tree.  She did not like the lights.  And she certainly didn't want any of it in her house.  Welcome to the life of a family with a child who has sensory issues.  So often we focus on her hydro complications or epilepsy set backs, other challenges slip through the cracks.  But sensory issues with Meagan are very real.  She doesn't handle transitions well, she doesn't like certain sensations or changes in her environment, and for a family of 7, this is very hard to deal with at times because we never know when she will react or become "unglued" from even a subtle change. And tonight was one of those moments.

As my husband continued to unpack the tree and put it up, Meagan was not having it! She was very upset and did not like it at all! It is times like these when although sad, you really do have to keep your sense of humor.  If we relished in every moment that Meagan did not enjoy, we would never enjoy anything as a family.  Sometimes, you just have a smile, or even giggle, and find the humor in the situation.  And that we did.  As sad as it was she didn't enjoy the tree going up, it was also funny to watch her come up with any excuse to get the tree out of the house.  The video below was Meagan's initial reaction to the tree being put up....

After seeing her reaction, we tried every avenue of distraction.  Focusing on the lights, the fun, Santa coming, my parents being here, etc... I sent the video to my brother with the humorous line of "well decorating should go great this year..." because last year she was already afraid of our Christmas figurines.  I know I have spoken highly of my brother before, but I just have to do it again.  Instead of just responding that it was cute, sad, or funny, he took time out of his night to record a sweet video for Meagan.  For some reason when he calls, Meagan responds - she races to the phone or to the sound of his voice and intently listens.  As I have noted before - these two are kindred spirits. :)  Nick encouraged Meagan to help with the tree and talked to her about how awesome it is in his video.  He spoke excitedly and lovingly, and helped to make it "no big deal"....he told Meagan to help her daddy and how fun having a Christmas tree would be.  I showed Meagan the video and she watched it intently.  She listened and hung on every word and really enjoyed seeing her uncle.  Then, after watching it, without the bat of an eyelash, Meagan scooted over to our tree all on her own! She approached it without fear.  She seemed to enjoy the lights, and even tried to touch the tree.  I turned on my camera and recorded her new attitude towards the tree to show my brother.  As you can see, when I even mentioned my brother's name, she scooted as fast as she could towards the phone - she probably thought he was on Facetime! For whatever reason, she connects with him - and in times like these, that is an even bigger blessing.  I forwarded the video on to my brother with a simple "Thank you."  Sometimes, all that can get her through a major sensory issue is a little encouragement from the guy who "gets her."

There is so much we have to be thankful for this year.  We have a wonderful family, special unique children, and unwavering faith that allows us to both endure and enjoy all of it.  We are so thankful that Meagan avoided another hospital stay and thankful for a trustworthy and knowledgeable doctor. We are thankful for understanding and for humor.  And we are thankful for the special occurrences that get Meagan through her random rough patches we don't know how to navigate.  What I have realized this year, is that Meagan truly helps us to be thankful everyday.  Even holding her on Monday as she whimpered and slept, I couldn't help but thank God for her presence.  I was so happy that even though it was a bad day, she was resting in my arms.  And today, I am even more thankful that she is back to her happy and spunky self.

We always know each day can bring the unexpected.  But with a child like Meagan, we are reminded of that a bit more.  Things can change in an instant and it's a constant battle to focus on the positive and what is versus what "could be."  But we are getting better at that, and feel blessed to have all been home together as a family this holiday week. We sincerely wish each and every one a blessed Thanksgiving week, and hope this Christmas season is starting off as it should - with remembering thanks for even the trying moments, and then giving thanks to God for others that get us through those times with love ..... and even a little humor.

Happy Thanksgiving everyone!

School rules

Well, the right school that is :)  We have ended the first two weeks at our new school and I must say - very impressed! Each child seems to be thriving where before we had thought or were told that they weren't capable of doing so.  It has been a joy to watch them flourish these last two weeks!

Reilly had to jump in to math of course mid year.  She was a bit nervous about this because she could never quite grasp the math fully at her old school.  After just a few days of some extra practice to grasp the concepts, she was right on board with all the new math, even though they were concepts she hadn't studied yet.  She said the teacher really explained everything well and she was even doing extra pages in her workbook!  Reilly brought home her first progress report and of course has kept her good grades - but even better was seeing her 98 in math. Yep...98.  Reilly had struggled with math at her old school - she had maintained a high B, but had to spend literally hours at home learning the concepts since many were thrown at her in school but not thoroughly taught for fluency.  This last year, we had received letters that she would need tutoring in math or she may not be passed on to the next grade in that subject (again, this is a girl who had a high B....she wasn't failing....but she needed tutoring)..... so needless to say, Reilly was EXTREMELY happy with her A in math and even happier that she understood the concepts.  Even with her missed sick days, the teacher worked with that, cut out the busy work and class papers, and only had her make up the tests or important lessons of the week. Her teacher told us when kids are sick they need to rest, get better, and concentrate on catching up on concepts and any missed tests - the daily work is not important to make up and would only bog her down.  That really helped her to stay on task and not be inundated with paper after paper that really weren't helping her grasp concepts.  I must say, I love Reilly's new teacher and her positive outlook.  I love that she seems to teach things thoroughly and works them hard during the day to make sure they really grasp concepts.  This helps Reilly to leave school feeling accomplished, and also having a full understanding of the lessons from the day - not to mention, it cuts down on the homework since things have been taught correctly during the school day.  Win - win.

Kaitlin is probably the biggest change for us overall.  She is thriving on learning, she is making a ton of friends, and she cannot wait to get on the bus to go to school each day.  This is a stark difference from the very subdued girl we started to see go downhill over the last year at her old school.   At her last conference, Kaitlin was told she has a "reading problem."  There was no back up testing, no official reading specialist who had done a proper evaluation, and I just wasn't seeing it at home.  So Kate left quite disappointed and held on to that notion that she had a "problem."  It especially bothered me this was said in front of her - an 8 year old shouldn't hear those things.  Conferences should really be adult only so free speaking can occur and teachers and parents can openly discuss a child's performance.  Now I had a child who was focused on her new "reading problem" and she was losing joy in something she used to love to do.  I encouraged her to just forget about that and try again at the new school and if something came up, we would properly diagnose it and get her help so it didn't impact her other academics.  Well what we have found couldn't be farther from the original opinion.  Kaitlin is reading extremely well.  She grasps concepts in comprehension and in recent nights, I have even had to go tell her to stop reading so she will go to sleep! Her teacher knew our concerns going in, and has said that so far, she sees no issues with Kaitlin and reading.  She said, quite the contrary - that Kaitlin is a smart and energetic girl. The teacher said of course Kaitlin is quiet most of the time, but that with some encouragement and light hearted fun, she is always able to make Kaitlin feel comfortable to read aloud in class.  Kate even told me she now likes to read out loud in class! (something she used to dread).  Kaitlin's new teacher even makes an effort to always emphasize how much of a blessing Kaitlin is to her class and her teaching experience.  Hearing things like that from the person that has your child all day at school is very reassuring that they are not only being taught well and excelling in academics, but that they are also loved - which is so important at those younger ages! I am so happy for Kate that she is loving school again and that she has a loving environment to fuel that curiosity for learning! And as if it could get any better - Kaitlin has her lunch at the same time as Meagan.  Can we say cute overload? :)

Anna is really enjoying making new friends.  She plays with any kid in her class and is very sweet.  She is excelling at all her subjects and judging by the comments coming home on her papers, her teacher really loves to read all her writing paragraphs and stories.  Anna is extremely creative and has shown this at her new school.  Her writing has improved drastically and now she even writes more than is required because she thinks it is fun.  She has been able to learn a lot, and is excelling at reading and math.  While doing this, she is also having a lot of fun.  Being only in first grade, the teacher likes to push them academically, but, she also has a classroom that moves a lot.  They still have centers and fun activities to break up the day because she said while they can start to learn "seriously" they won't take learning seriously if it's not fun.  She's correct! These kids are 6 and need a fun environment.  Anna's centers focus around math or numbers but in creative ways and really lets the kids get up and do different things during the day.  Anna loves this because as she told me, she is "not sitting and writing all day and getting cramps."  ha - the eyes of a 6 year old! I am really enjoying watching her blossom in her new classroom.

Last but not least, Meagan has absolutely blossomed at school.  If you remember the first week we did have tears - as expected - with me dropping her off and throughout her day as she would get distracted but then want mommy and cry.  I am happy to report that last week, we had no tears.  :)  Meagan absolutely LOVES school.  In just two weeks it has helped her with so much.  She is following the routine of the class, and is learning to follow outside instructions.  The teacher gives the students jobs like in any typical preschool, but incorporates them with therapies for the kids.  The students are shown a picture chart and they indicate (however they can whether it's a noise, pointing, or a look) which job they would like for the day.  For example, Meagan picked the flower last Tuesday.  This meant her job was to water the plants.  The teacher coordinated this job with Meagan's PT.  So when the PT came, they worked on walking to get the watering can, walking to fill it up, walking to the plants, and then standing while the PT helped Meagan water all the flowers.  On Wednesday, Meagan was line leader.  That day they worked on routine and structure - how Meagan had to stay with the class and stay in line, but lead when they would tell her to..etc.  And she wasn't confined to her chair either.  Meagan scoots on her bottom - so she leads on her bottom :)  This made me so happy to hear because that's Meagan - that's how she gets around and her teachers just incorporate it right along with the class.  They aren't worried about Meagan being in a chair or being "upright" like "other kids".... if Meagan needs to move in line, or move about the room, or other things, she does so - scooting along on her bottom.  And the other kids don't even bat an eyelash - that's just Meagan and in two short weeks, they get it and accept her for it.  That is inclusion.  And it's a wonderful thing.

Of course with preschool comes all the silly crafts - Meagan made a few this week.  She made a handpainted turkey to help decorate for Thanksgiving and also made hand cut outs that the teachers helped form in to a turkey hat.  It's quite cute - and quite hilarious.  Even these little tasks help Meagan in so many ways.  For example, she cannot stand things on her hands - even working at home it's always a battle.  But in school, she seems to be making progress.  The first two days paint was put on her hands she cried and didn't like it.  But upon seeing the other kids doing it, and the teacher really talking to her about how it's fun to make things, last week when paint was put on Meagan's hands, she didn't cry.  She instead studied her newly painted hand, and then reached out and asked the teacher "what color?"  So she is making progress in sensory areas too which is so important.

Meagan's crafts from the second week!

The problems that were happening and snowballing at our old school were so detrimental to the girls, it warranted a big change. It was a risk and a leap of faith, but now in hindsight, we are so happy! They only have one childhood and as mom, it's my job to protect that as much as possible.  Nothing will ever be perfect, but, having an environment now that is so inclusive to all the girls, that is so loving and genuine, and that has such open transparency and communication from the administration are all  things help to deter problems before they start - and if there is an issue, these practices at the school make it easy to address the problem and move forward in a positive manner.  Knowing the openness and respect is there for parents is a huge deal - especially when it is ultimately us who allows school the privilege of schools being around our precious children day to day.


When I picked Meagan up on Wednesday from school, she was all smiles.  She gave a big "hi MOMMY!!!!" and I loaded her in the car.  I leaned down and gave her a hug and said "So Meagan do you like school?"  Meagan sat about 30 seconds (we have delay with brain and her retrieval process... :) ) and finally looked at me and said "yessssss" I said "That's so great Meagan! What do you love about school?" .... another 30 seconds went by and Meagan dipped her chin into her chest and with the biggest smile said "I have friends."  School rules.

Happy healthy girls

Open Letter to Meagan's followers - It's Your Turn

To those who follow Meagan's story,

I'm going to venture a "little" off subject here as I write today's post.  Veteran's Day has always been a day that has meant a lot to me.  Being raised in a military family, and living around the world growing up during peace time and war time, I got to see first hand the willing sacrifice the men and women of our armed services put forth daily in their military service.  I was raised to always respect men and women in uniform, recognize their selflessness, thank them for their service, and do what I could to support them no matter how small it seemed.

3 generations of Veterans:

 Grandpa's grave (Army Air Corps, WWII), my father (USN, Vietnam),

 my brother (2nd Recon Bravo I Marine Corps, Iraq)

Our family has a long history with those serving our country.  From my grandfather, to my father, to my father in law, to my brother, to Brian's brother in law, and many cousins, uncles and close friends along the way.  Of our veterans, besides my father of course, my closest relationship is with my brother, Nick.  I will never forget when I took him out for his 21st birthday weeks before my wedding and he told me he had enlisted.  I was not surprised - growing up he had always talked about joining the Marines.... I knew it was just a matter of "when," not "if."  Nick served 4 years active duty in the Marine Corps -  2nd Recon Bn - Bravo 1. He sacrificed a lot to fight in Iraq and other areas for us all to be safer earning many recognitions including a Purple Heart. (He would never tell you though because that's just him - and any Marine - honor and humility.....) Thankfully, he came home, but many of his brothers did not.  Because of my close relationship with him, I will always remember everything they went through and make sure my children grown up knowing as well.

Fast forward to Meagan's birth.  We of course had a c-section planned and were given the date of September 22nd.  As the date neared, we heard that there were a few emergencies that were going to actually bump us to September 23rd.  While I wasn't happy about waiting another day to meet Meagan, I was happy that her new birthday was going to be on Nick's birthday. Although Nick was my "little" brother, I looked up to him tremendously.  I watched him honorably serve two intense tours in Iraq, work through loss and TBI  to power through college on his own, finish his degree, get a great job, care for his son, and even find time for bringing awareness to post-war Marine injuries by taking part in things like the George Bush Wounded Warrior Ride and other events.  Knowing all Meagan would have to face,  I was honored to know our special little girl would be born on such a great day.

Nick on the Wounded Warrior Ride

Once Meagan was born, there were a lot of adjustments in our lives as you know.  Even though Nick was far away, his concern and questions were never far.  He would often text or call asking how she was doing.... or in true "Nick" fashion, send me something so funny I would be "that" parent laughing out loud in the middle of the NICU.   I remember all the visits we have had since then when he has held her, played with her, and praised all her accomplishments.  He calls her his "brain buddy" because he knows she "gets him" on those off days.  Sharing a birthday isn't their only commonality - they both have an infectious sense of humor, and are the kindest people you would ever meet. Nick is an incredible father to his son, the best little "big" brother I could have asked for, and is a loving and supportive uncle.

Nick and Megs - a special bond. 

Now why all this attention on my brother and his fellow Marines today? As you know it is Veteran's Day today.  We see all the Facebook posts and pictures honoring those we love who have served - but what are we actually doing about it? What can we do since we are not the ones voluntarily putting our lives on the line for freedom? What else can we do besides passing along oh so important stories of brave men and women on to our children? How can we show them true action on our part to say thank you?

For me, personally, it is my brother and his fellow brothers, both fallen and still here, who I would like to support.  Nick recently made a webpage asking for support for his fellow Recon brothers and their families.  As he states on his page:

 ..." [Your Marine Reconnaissance Foundation]... donation goes directly to helping Marines and their loved ones battle through tough timees and austere conditions. Additionally, take pride in the fact that you are supporting the tip of the spear in the Marine Corps - the dirty, hardened, cammie-painted men of the Reconnaissance Community...."  

He goes on to say:

"To show my committment to this cause I will be competing in several Triathlons throughout the 2015 season - 3 of which are Half-Ironman events!  Through training and competition, I am in store for pain and misery - However, it is nothing compared to what some of my Recon-brothers and their families have to endure due to wounds, injuries, or financial distress.  I've been there, I received help myself, and now it is time to give back." 


So I say to you - it's your turn.  These men and women have sacrificed not once, not twice, but time and time again.  Even after their active duty ends, their duty to us and their self sacrifice never ends.  Because that's just how they are made.  Next time you just want that $5 pack of gum at the checkout, or the $6 Starbucks coffee, or maybe instead of that cute new top you have been eyeing at the store, or the new electronic game you have been waiting for..... take that money, and sacrifice a little of your luxury to donate to the MRF. There is no amount too small and even better,  your donation goes directly to help these Marines and their families. You can visit my brother's webpage HERE to make the donation - and I encourage you to please pass the link on to others.

Afterall, these  are the ones we rely on to keep those luxuries we enjoy everyday.  These are the ones we rely on to sit in dirt, or fields, or sand while we snuggle in our comfortable beds.  These are the ones we rely on to walk towards bullets or bombs while we safely sit in our homes.  These are the ones we rely on to give their lives - so that we may have one more day to wake up in a free land.  

Sincerely,
One proud Marine sister and one grateful American
Semper Fi

My brother and his brothers