Unhinged

When we got home from the store this morning, I was getting the kids out of the van.  I needed to get the groceries upstairs and get ready for a few students I had coming for lessons.  The kids got out, I got Meagan, and I pushed the buttons to slide our van doors closed.  The left door slid closed and latched.  The right door started to and then I heard a big noise....and within just a few seconds I noticed our sliding door was no more - it was literally hanging off of our van by a wire.  Seriously?? My first thought was disbelief - did that really just happen?  I had just been talking to my husband about how we were finally almost finished paying off the van and could breathe a little bit with car payments at least... with the van pushing 180,000 miles, I had voiced how nice it would be to be payment free for a little while and then hopefully trade it in for a newer used van later this year.....  Oops.  I supposed I should keep my mouth shut from now on.

It's funny how something literally coming unhinged can make me think how unhinged our own life has been over the last month.  There has been quite a lot (especially emotionally and financially) going on! But the events of this last week have me on cloud 9.  Meagan has been bouncing back wonderfully.  Her speech has slowly but surely been returning and we have had no issues with her incision this time (thankfully.)  She has been thriving back at school - proud of her new Frozen back pack and enjoying the time with her friends.  She had great OT and PT sessions this week - Meagan chose "table wiper" as her job on the chore chart, so the therapists were able to come work with her and help her complete her jobs in the classroom.  The only time Meagan cried was in the mornings going to the bus - but it had nothing to do with the bus.  What was wrong? Meagan had to wear a hat to school.  It was below freezing out so I had to put hats on her.  Meagan hates hats.  She has always disliked things on her head, (and I can't say I blame her), but she really needed the hats.  I decided this was one sensory thing we had to tackle and sooner than later since colder temperatures were in the forecast.  When she came home from school, I left our hat/gloves basket out in the hallway in hopes Meagan would play with them at her leisure and would find one she liked.  Sure enough within a day or so, I heard a bunch of noise in the hallway as I washed dishes in the kitchen.  I sneaked into the hallway to see and there she was - having torn the whole basket apart and she even had a hat on her head.  A Browns hat too! (Daddy would have been proud.)  So we will see what next week brings and if we have a little better luck with wearing hats onto the bus.

Loving her new backpack

Hats are fun now... right!?

Ready to wear her new little ghillies to her sisters' dance class!

Meagan also had a neurology follow up on Thursday morning.  I giggled as we waited in the waiting room - she insisted on looking at a "book" but all they had was a basket of grown up magazines.  Still, Meagan was adamant about holding one, so I grabbed one for her - as she sat there flipping through the pages I was just enamored with how "grown up" she suddenly looked.  We looked through the pages of ads and pictures before she was called back.  She seemed especially interested in the Rolex ad page (perhaps an influence of Uncle Brad?) When we got back to the exam room,  Dr. F couldn't have been more pleased.  He was shocked how happy she was so soon off a hospital stay and was very proud of all her progress over the last year.  Meagan was very compliant and did a great job at her check up.  She even gave him a fist bump on the way out.  She's come a long way from screaming through every doctor appointment.

Loving the Rolex ad... she better get a good job!

We of course got Meagan back to her usual therapy regimen at home as well.  Mrs. M started to come back for regular appointments and get Meagan back on track.  We have a lot of news to report! As you remember, before Christmas Meagan was finally getting comfortable with her walker.  She wasn't afraid of it anymore and would actually let us help her stand with it.  Mrs. M was happy with Meagan's progress so she said Meagan is ready for her next set of AFO's ! She wants her to have some custom made so she gets a little articulation in her ankles if possible.  She originally thought she could move her to SMO's (support only from the ankle down), but after examining Meagan, Mrs. M realized Meagan's lower legs and knees are still extremely weak and wobbly - so still needing the AFO's but hopefully strong enough to start getting some movement through her ankles.  I'm really excited for his because as her AFO's are now, she cannot move any of those joints so I will be interested to see what Meagan thinks of her new braces!   

After Mrs. M finished with Meagan, we had a few new goals.  First is to get Meagan's new AFO's ordered.  Second is to work on independent standing with Meagan - she wants her to get less relaiant on "leaning" and work more on building her core balance to hold her body up on her own.  Third was to get up on her walker on her own and stabilize.  Within a few minutes of Mrs. M leaving, Meagan was just sitting there staring at her walker.  I looked at her and asked "Meagan, do you want to stand up on your walker? Do you want to show me?"  She suddenly scooted towards the walker and sat in front of it.  She stared at it for about five minutes and then put her hands up on to the handles.  I grabbed my phone because it looked like she was going to pull up! The wheels don't have locks, however, so I had to keep one hand on the walker while holding the phone with the other.  What I saw next was pure bliss - Meagan reached and struggled and within a few short moments pulled her little body up on to her walker! She looked unsure for a moment so I reminded her to "look for the red" (which refers to her walker handles) ..... as she processed the instructions and moved her hands about to stabilize, I was shocked! She had just pulled herself up onto her walker for the first time.  The joy in her face at the end was the only validation needed - she was pretty proud of herself.  And rightfully so.  

With all we have gone through in the last month, (Dudley's diagnosis, close family member's diagnosis, Meagan's hospital stays and scares, etc...) what happened with the van this morning seems almost like icing on the cake.  I actually did cry about it.  But then I laughed.  And laughed some more.  I'm finding life has a lot of moments like that.  Crying and laughing seem to come together sometimes.  But I think that's by design.  As I sit here on this Saturday, I think how just two weeks ago I was sitting on Meagan's hospital bed holding her....leaning over her seeing her lacking muscle control or speech, seeing her body freak out and not knowing how things would work out.  I remember that fear and uncertainty - and seeing her now having come through all that, I can laugh at the van door.  It's very inconvenient and certainly not what we need right now, but I can laugh at it. It's just a car.  I have learned the time I really need to cry.  And I have to say this week I have not had many reasons to do so.  

It's amazing how out of such a snowball of adversity we have been able to have such blessings of happiness paint our life.  The craziness of our last several weeks would be enough to let anyone become unhinged - but with so much to be thankful for, we refuse to go down that path.  Just as the door hangs by the wire, we cling to the hope that these joys are here for a reason.  They are the wire holding us to the body of hope that gets us through almost any challenge - as sad or funny as it may be.  I'm so excited to see what comes for Meagan over the next few months.  It's amazing watching her transition from a little toddler to a little girl - a very special little girl no doubt.

Meagan being her silly self reading Uncle Mike's book

Meagan loves her Mickey/Minnie Mouse number cards

Fascinated with pancakes

A small favor from Meagan - if you could please go to one of her favorite nurse's websites.. HERE .... and like their page it would be wonderful.  Nurse Jennifer was the one with Meagan through several of her stays, but most importantly, the nurse who was with us through Meagan's worst night yet.  Her quick actions helped us get the on call neurosurgeon there in a timely manner, and her attentiveness has no doubt helped Meagan get where she is today.  We would be grateful if you could stop by Nurse Jennifer's facebook page linked above and give it a "like"... and if you love really good popcorn, order some! It's the least we can do for all she helped us with over the last few years and especially two weeks ago.  Thank you!!

Snowball: Melt into Faith

Meagan did pretty well  through New Years Eve... she was a bit restless but slept on and off.  By New Years Day, I decided we needed to be a little more aggressive in waking her up and making her try to be up and about even if she didn't want to be.  She was still resistant, but, she seemed less groggy when I did try to wake her up throughout the day.  She played a little bit and seemed to show glimpses of herself again, but she still asked to go "goodnight" many times.  She still slept a lot.  By evening, it was clear that hopefully we were on the mend and could hopefully go home the following day. 

Waking up!

By later that evening, Meagan started to breathe heavily in her sleep.  I started to watch her and she would almost get so asleep she would stop taking a breath for a few seconds, then gasp, breathe heavily, and wake up only to try and fall asleep again.  I knew something was up because when she did this last time, we had the events of Saturday night unfold.  The nurse suggested we try to wake her up and keep her awake for a bit since her respiratory was falling so low - I agreed.  When we tried to wake Meagan up, though, she was resistant.  She just didn't wake up.  After several minutes of moving her, rubbing her hands and feet, picking her up, and basically disturbing her any way we could, she finally woke up and kept her eyes open.  But that's when I noticed the shaking - her eyes were constantly shaking..again.  She also was trying to speak to me and once again, just noise.  No words.  No clarity.  Just trying to speak and no success.  My radar immediately went up because this is exactly what had happened on Saturday.  The nurse came in and called in another nurse who luckily had been there the previous Saturday night and she said exactly what I was thinking "Oh my gosh, this is just like last Saturday."  We propped Meagan up, tried to talk to her, yet comfort her at the same time, and I noticed when I lifted her she barely had any head control.  She was trying to sit up but could not move her head or arms.  At that point, the nurse said she was going to page the on call Neurosurgeon. He of course wanted a repeat CT immediately.  We rushed Meagan down to the scan and then waited.  In the meantime, we gave Meagan more Motrin for any possible pain, and administered her seizure meds. (she had two seizures upon returning from CT).  I kept waiting for the thrashing to start - which was her final symptom the previous Saturday before she was externalized, but luckily, it never started.  Over the next several minutes, she seemed to calm down and just rest.  Her eyes were still insanely shaky, but her body seemed to relax.  She seemed like she wanted to pass out, so I let her.  I figured if it was just a "glitch" she needed the rest.  Dr. B came by after seeing another emergency and said that since her body seemed to be calming down, he was going to leave her to rest and re-evaluate in the morning.  He said on her CT her vents looked smaller so that was good and we would see if she stayed stable through the night.  Of course I did push back and question the smaller vents - which is actually NOT something you want in a slit vent kid - but Dr. B wouldn't budge.  Since Meagan's vitals were fairly stable and it was obvious he wasn't grasping her condition very well, I decided to let it go and see how she did.  I figured if she got terribly bad, he would be paged to come back.  If she didn't, then at least we dodged a bullet with another neurosurgeon diving into unknown territory and could talk to Dr. R at Meagan's follow up once he returned.  

Maybe not...wanted to lay down and cover herself with a pillow or sheet!

I'm not sure if it was just a recovery "hiccup," or a fluid adjustment, or all the prayers I said that night - but thankfully, Meagan woke up the next morning much much better.  Her eyes were still shaky, but her other symptoms seem to have subsided.  She had speech back and she had regained her head control again.  She did look a little puny, but after throwing up twice, she seemed to perk up.  Sometimes we will never know what was bugging her, but I was just glad to see her back to "baseline."  At that point we decided to really push her to get up in a wheelchair and go play - to see how she did with toys, interacting with others, and if we could get her to eat. 

It was fairly clear we weren't going to get her to eat much at that point - she still looked nauseous.  Child Life came in and got us a wheelchair.  They helped get her to the playroom where she perked up a little bit.  She became interested in the ball and basketball hoop so they wheeled her right in front of it.  She started to say "ready...??? go!" and then she would throw the ball in the hoop.  After a few times, however, she started to look a little 'green'.... she then threw up a little bit so we decided maybe she had enough basketball. :)  We cleaned her up and wheeled her up to the table where Ms. K and Ms. K (yep, two child life specialists whose names begin with K!) brought light up and music toys to the table.  Meagan was able to play there a bit more and her stomach seemed to calm down.  Before we knew it she was bossing everyone around asking for this toy, or that toy, or getting mad when a toy didn't work the way she thought it did - yep, Megs was on her way back.  Ms. K and Ms. K were getting such a kick out of Meagan - when they started laughing at her antics, I knew Meagan was probably on the road to going home.  

Looking a little puny when forced to sit up

After two pukes, she wanted to play

After the playroom, we saw "Elsa" Blaire (as Meagan calls Dr. R's PA) and we both decided if she continued to improve, we would be discharged.  Then at her follow up, we could talk about any lingering concerns or a few of the episodes Meagan had experienced during her stay.  I was comfortable with that and decided it was time to take Meagan downstairs to see if she would eat some food.  We made our way downstairs to the cafeteria where she promptly asked for chicken - when Meagan asks for chicken, I know she is starting to feel more herself.  It's one of the few solid foods she will eat fairly well and fairly often.  I decided to take her up to the lobby to eat because they have small tables just about her size where I could pull up her wheelchair.  She was very serious trying to sit up and nibble on some chicken.  I was talking to her about the different lights and colors around the lobby and Meagan was being her usual silly and cute self.  Next thing I knew, the family that had been sitting next to us approached me - the dad put a bag in  Meagan's lap.  I looked up and he said "just a little something for your sweet girl."  I thought it was so nice - I did tell him it wasn't necessary but he insisted that the gift was for Meagan.  Meagan opened the bag and found a little sock monkey inside.  She loved it and started to put it next to her in her chair as she continued to eat.  I told the dad thank you and thought his little act of kindness was so genuine and sweet.  After Meagan was finished eating, we made our way back to her room, sock monkey and all, and started to pack our bags. Meagan lounged in the bed and even snacked on some popcorn - all the while laughing and giggling.  It was so good to see those smiles. 

A very serious chicken eater

All smiles while snacking on some Cartwright's Popcorn 

Meagan's nurse went ahead and removed Meagan's IV so she could get dressed.  We packed our bags, and waited for the wagon where we packed all her stuff.  I picked Meagan up, and we said our goodbyes.  We have a running saying with a lot of the nurses and staff there when we leave in which we say "Hopefully we don't see you for a long time!"  We don't mean it in a bad way - but anyone who cares for medical kids, or has a medical kid themselves gets it.  We love love love Meagan's caregivers at the hospital - but really, we hope we don't see them for a long time because that means Megs is home with us thriving and doing well. :) 

We have a follow up with Dr. R soon in the coming week to have Meagan's staples removed and chat about the events of the last last few weeks.  Of course as soon as Megs got home she was incredibly happy to see her sisters.  She just smiled and loved on each and every one of them and melted into their hugs and kisses.  She also spent a lot of time getting reacquainted with her dog.  He still was in his cone for one more night, so she found it difficult to snuggle him, but she found ways to lean on him, pet him, and just love on him.  Unfortunately, we found out from the vet yesterday that we are probably looking at an 8 month window give or take with our sweet dog.  So seeing Meagan giving him so much love made me happy - with all she's been through, she must know more than anyone to never take a moment for granted.  She truly lives for every wonderful moment she has - she doesn't know any different. I love that about her because she reminds me how new and fresh every moment really is and how important it is to enjoy them to the fullest.

Meagan snuggling her puppy

We are hoping we have a long stay at home this time with Meagan.  She is so complex that this last trial has really taught me how wonderful Meagan's long term providers really are.  A very special thank you to the neuro floor nurses and techs - you know Meagan just about as well as we do and it is such a comfort when we are in hospital to have you at our side. Thank you to the Child Life specialists - you go out of your way to always bring Meagan something special to help her stay be as "fun" as it can be and help us to get her back to her "normal" so she can have a successful transition home.  And finally thank you to Meagan's neurosurgery team - of course Dr. R for her long term management (which goes without saying), but also to the two Dr. B's and Dr. S and Dr. M who all helped us manage her case during these last two consecutive stays.  We fully understand it is not easy to jump into any case, but especially a little complex miracle like Meagan and we appreciate you sticking with us, listening to us, and most of all, working with us to try and tackle what was best for her when Dr. R was out of town. 

Meagan back to her goofy self - it's what makes her so infectious!

Anytime Meagan has problems arise, it is always concerning and worrisome - but having problems arise with her usual trusted surgeon out of town was especially nerve wracking.  It was more of a test of our faith because the one person we trust most with her here was absent.  But then that's what faith is, right? Trusting even when we don't exactly see what the plan is - believing even when we don't know the outcome, and giving our worries to Him when we are in an unfamiliar situation.  At times over the last few weeks, Meagan felt so far from me.  The night she was the worst I had ever seen, I honestly was at a loss - it was the first time I felt fearful for the outcome.  We were so far from an answer, Dr. R was so far from her, and I felt far from grasping what was going on.  But then, as St. Monica said, "Nothing is far from God."  If nothing is far from God, then He is not far from us.  Which means our faith is there always to get us through.  I have learned in the last few weeks that when the snowball starts to build, we can conquer it through faith. We may not have the answers ourselves, but by melting into our faith, God will provide the clarity, the comfort, and the peace we need to see it through.

From our family to yours - we wish all Meagan's family, friends, and followers a happy and healthy New Year......

"We are at Jesus' disposal. If he wants you to be sick in bed, if he wants you to proclaim His work in the street, if he wants you to clean the toilets all day, that's all right, everything is all right. We must say, "I belong to you. You can do whatever you like." And this ..is our strength, and this is the joy of the Lord."    -- Mother Teresa

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