Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Monday, June 30, 2014

Weekend of Adventure

With Meagan not even two weeks post op and Reilly recovering from Pneumonia the last week or so has been pretty quiet - keeping things simple, staying close to home, and not doing much activity so everyone could get to feeling better.  By Friday Reilly seemed to really turn a corner and had her first fever free day, and Meagan was still doing great so we were excited to enjoy a busy weekend as a family.

Saturday, the girls attended the Burke Connolly Academy send off for their dear friend Emmy as she goes off to the Irish Dancing Nationals next week.  The party was at a local Irish pub and it was a ton of fun for the kids and adults alike.  There was good food, good drinks, good company, and of course some Irish dancing put on by the kids.  Meagan found her own way to be involved and wanted to be right in the middle of everything (of course).  She is very spoiled by our Irish dance family, but we are grateful for that.  We wish we were also going, but we decided months ago it wouldn't be affordable for us this year....and as it turns out, with the timing of Reilly's pneumonia it was a good thing we had pulled her out of competing this year.  We wish lots of luck to Reilly's dance bud Emmy and safe travels for her family! We can't wait to hear results and get back to classes again!

Daddy and Megs relaxing watching some World Cup at the pub

Meagan finding her way into the middle of course. These girls are so good to her! 

After the dance party, we headed north to Johns Creek - our symphony was putting on an outdoor concert so we decided to go as a family.  Brian and the girls got settled in the audience and I went up to play.  The kids really enjoyed the music.  During the first few pieces, I could hear Meagan out in the audience going "yay!" and clapping.  By the fourth piece, I could see her completely passed out asleep in her wheelchair.  The other kids liked all the music and listening to the different instruments, and it helped it was outside so they had a lot to look at without being confined to a small indoor seat.  After the concert, we said goodbye to some of my fellow musicians and then headed home.

Sunday started out like any other day - we decided because of the late night to let the kids sleep in and we would just go to Mass whenever they woke up.  Everyone was awake in time for mid morning Mass, so off we went.  After Mass, we were heading home when Brian decided to cut through the Old Town square.  He always likes to drive through there and see what's going on.  I'm glad he did! As it turns out, it was the 150th anniversary of the Civil War and so the whole square was filled with real life exhibits and displays about the civil war.  They had several tents set up showing the type of food soldiers ate, the weapons they used, the medical care they received, and many many other things. We spent the entire afternoon exploring, watching and learning and eventually headed home in the evening.I'm a huge lover of history, and think it is very important, so seeing the girls really enjoy all the hands on activities was great! 

Live demonstration

Kaitlin getting to do a mock bullet removal in the medical tent

Checking out all the old foods and medicines from the Civil War

Watching the mock demonstration of lifesaving battlefield surgeries - 
of course this session it was brain surgery...  go figure.

Today Megs had her next PT session.  I was excited because I knew Mrs. M was bringing a gait trainer she has for Meagan to try.  We have been working a lot on standing and cruising, as I said in the last post, but we really want Meagan to get the feel for moving her legs separately so we can show her how walking feels..etc.  Her back is still weak so she spends a lot of time in her Benik support vest to help her control her trunk better and her knees still buckle a lot so the option of a plain simple walker was out of the question.  Luckily Mrs. M had this gait trainer available starting this week from another patient so she brought it for Meagan to try out.  Mrs. M sat with Meagan first explaining the whole thing and what the different gadgets meant and how it would help her.  I love that she does that - she has always done that since she started working with Meagan, even when Meagan was in more of a "fog."   She has always talked Meagan through things or explained things to her and treated her the same as my other typical kids.  I find so much value in that because no matter the level of understanding we can see on the outside, one never knows what may be going on inside these kids' heads, so I love how Mrs. M realizes that and always talks to them like fellow equals.  Having that in our PT is invaluable.  

 Mrs. M explaining what this new thing is to Megs

To help ease Meagan in to it, Mrs. M had Maura try out the gait trainer first.  Maura walked around in it while Mrs. M showed Meagan that it was "no owies" and would be lots of fun.  Of course Megs didn't like it because of being strapped in, etc.. she screamed and flailed for about the first 5 minutes... but then after that, she gave a silent "whine" through the whole session.  This is a good sign because it's the same way she acted when we had worked hard on head control, the same way we had worked hard on independent sitting... so I know she will adapt and get used to it. To clarify there is a sort of "saucer" seating element under the main straps that supports Meagan's bottom and upper legs.  Also as you can easily see there is a large padded strap that goes around her torso to hold her up, essentially.  So she is still 100% supported in this - but it lets us try to help her have time upright without us constantly bending over and holding her under her arms to help her stand.  It also lets her realize what she can do on her "own."  As she gets stronger and adapts to this device, we can slowly strip away elements of it until it is literally down to just the frame which she would hold on to for support.  There is really no timeline - it took her a good 16 months to learn to sit independently so we are in no rush.  The goal is to at least just get her comfortable so we can start instilling that feeling of standing and walking to build her confidence level which will hopefully in turn build her physical strength.  I'm excited to start putting her in it a little bit throughout each day so we can desensitize her to it and help her realize all the independence it will give her! 

Maura demonstrating for Megs

Not liking it too much, but we will get there.

It was quite a busy weekend, but also a good one.  Lots of fun times and learning opportunities for the girls, and I was glad to see my family back together again enjoying this weekend of adventure.  We try to do things like this with the older girls when Meagan is in hospital to distract them, but, it's so much more fun when Meagan can enjoy these things with us too.  I'm excited to work with Megs this week and see if we can get her a little more tolerant of her gait trainer.  If she can become more comfortable with it, I can see a lot more weekends of adventure in our future - but hopefully with Meagan moving on her own two feet!

Wednesday, June 25, 2014

Small Strength

Meagan had a very good first weekend home.  She was right back to her normal activities....playing with her sisters, toys, and books, drinking her bottles well, and tolerating all her tube feeds.  We notified Mrs. M (PT) and she had space available for Monday so we took it.  I was anxious to have Meagan's arms evaluated and see if there was any improvement.  Much to our relief, Mrs. M saw a complete turn around in Meagan's arm weakness! She said Meagan still hyper extends a little, but, that is simply from damage already done the last few months when Megs was compensating for her arm weakness....so her ligaments were stretched.  Mrs. M said that for now, though, she sees no new weakness and actually saw Megs engaging her arm muscles again just as she had been doing in February.  She said we will still use the arm braces to help those damaged ligaments stay in place as she builds back her arm muscles this summer and hopefully with time we can correct that.  I was very happy to hear all of this because although we suspected her arms were due to the same issues causing her pain episodes, it was still just a hunch.

Mrs. M said that even though arms are looking better, we are still going to continue to work on standing and cruising.  She was so happy with Meagan's supported standing and said her legs seem to be stronger.  She said Meagan's hips are still very weak though so she wants us to start facilitate some supported cruising with her so she can build hip strength through side stepping.  Meagan tolerated this well and so we will be working with her on getting that better and better to help with those hips. Mrs. M said if we see improvement with the hips she will bring a gait trainer for Meagan to try soon.  She thinks once Megs gets over the initial fight of being strapped in, she will love the freedom to try and move her legs on her own.  After such a great PT session, and getting the confirmation I needed about Meagan's arms, I decided to go ahead and email Blair and Dr. R to let them know.  I sent them a picture of Meagan working at PT and told them the great news. Although the news was good, it is just a small step to get Meagan to where she was at the beginning of February...but I'm sure in no time we will see full improvement in her arms.

Working so hard

Meanwhile, although Meagan had a great weekend, our oldest, Reilly had something brewing.  She had been complaining of her back hurting her all week but then Thursday started to get a fever. I knew she felt awful if she told me because this is the same girl that danced on a stress fracture for two weeks.  The fever was fairly low grade so we kept an eye on it and she seemed better with Tylenol or Motrin.  By Saturday the fever was still lingering, but we really had no other symptoms and she was still comfortable with medicine...still wanting to play, etc... We assumed she was battling the same small head cold we all had the week prior and continued on our regular schedule. Sunday is when things changed.  She started to spike a higher fever as the day went on and even with Motrin it was hitting almost 104.  I decided to take her to the urgent care to figure out what was wrong.

At urgent care, we explained her fever and back pain and by then she started to have a little bit of a dry cough.  The doctor checked her over and told us to continue Motrin at home and if not better in three days to see her Pediatrician.  I was a little shocked by this, but we were all tired and busy and so we went home and decided to take his advice.  Late Sunday night, Reilly still wasn't asleep.  Her back was hurting her so badly that she couldn't sleep.  She was still carrying the high fever even with meds and so I knew something wasn't right.  My "mommy gut" just said the doctor had completely missed something and I decided she needed to go to Children's.  I got a friend to take two of the kids, and Maura and Meagan tagged along to the ER with Reilly and me.  Once we arrived they were very good about getting us back quickly.  The ER doctor we saw was very good - a true "detective"... the kind of doctor you want in the ER.  He looked over Reilly thoroughly and listened to us about all her symptoms.  He said he wanted scans of her lower back and also her chest and blood work.  He said he had a few hunches but wanted to see what these tests showed first and go from there.  About an hour later, the doctor came back in an said "Well she has full blown pneumonia!"  I was shocked... "Really?"  He said "yep... " and proceeded to show us her X-rays.  Even to the untrained eye, it was easy to see she definitely had pneumonia.  He said over the years when kids present with high fevers and back pain, before jumping into lumbar punctures, etc.. he has learned that sometimes respiratory troubles have presented this way...so he always gets a chest xray first.  I'm so glad he did because that was our answer.  He checked Reilly's oxygen levels - she was still above his parameter for admission so he said as long as we were willing to hang out in the ER for the day he would get her a few IV doses of Rocephin, and then send us home with oral medications to finish over 10 days.  I was fine with that because just getting out of the hospital, I really didn't want to have another kid in - if that was avoidable.  We stayed the rest of the day into the late evening and once Reilly was finished with her IV meds, the doctor sent us on our way with a prescription for home meds and instructions to call back if her fever wasn't gone in a few days.  I was so happy we had gone back in and also that we had caught it in time to avoid another hospital stay.  So far, her fever seems to be going down, albeit in small steps, but at least in the right direction.

Pneumonia it is

We started to make our way to the car and got in the elevator.  As the doors opened on our level of the garage... there stood Dr. R! I know for a split second his heart probably sank when he saw Meagan and me coming out of the hospital...but I quickly said "Don't worry, we aren't here for Meagan."  He asked what happened and I told him.  He said he was sorry Reilly was so sick and hoped she would feel better soon.  I said thank you.  He then told me with a huge smile he had received my email that morning and was so happy to hear about Meagan! I agreed and told him all about her PT session.  He said he was so so happy and would see us in a few weeks to remove Meagan's staples.  I said goodbye and continued to walk to my van.  A few minutes later Dr. R walked by us and offered to help me get everything in the van.  It was very nice, but I just told him no thank you - I had done it a million times and he could go ahead and go.  He said ok and continued on.  Not a few seconds later, Dr. R was back and my van and said "Please let me help you."  I was appreciative of his kindness, and so I said ok.  I really didn't have that much more to put in but I did have to break down Meagan's wheelchair and get it in the back.  He went over to Meagan and so I said "Would you like to hold her while I put this in?"  He smiled and of course obliged.  I unbuckled Meagan's straps and he picked her up out of her chair.  Meagan went right to him and snuggled him - a lot.  It was very sweet.  Once I was finished loading the chair into the van, I went to get Megs from Dr. R but instead he asked, "And where does Meagan sit?"  I took him around the side of the van and showed him her carseat. He asked if he could put her in and of course I said yes.  He put her in her carseat, gave her a snuggle, and continued on to his car.  It was a small gesture, but a very appreciated one after a very long and trying day!

Such a special relationship

One thing that has never wavered in Meagan, pain or no pain,  is her sense of humor.  The girl is hilarious and has always found ways to make us laugh.  Her new thing since coming home is to ask for a Popsicle.  She will lick it a little bit but I end up putting it in a bowl and feeding it to her on a spoon. I will leave you with a little video of her having her Popsicle the other day.  She has a new thing with saying "please" where she must think if she says it louder and emphatically signs the word as well, she will get her way.

We go back in a week or so to have Meagan's staples removed.  Otherwise we are just back in to our normal routines with day to day things and therapies.  We are so happy to see where Meagan is this week compared to two weeks ago.  No infections, no shunt issues so far, and a huge improvement on the pain and physical struggles we were seeing pre-surgery. Every small step is a bit closer to full recovery. The determination and sheer will I have seen from Meagan over the last several days makes me hopeful for what she will accomplish this summer now that she is feeling better. Meagan is a such a small little girl, but don't let that small stature fool you.  She has grand dreams.She has will power. And she has strength.  The strength in her tiny 20 pound body always astounds me, and I know good things are to come for her.  As Mother Teresa said, "Be faithful in small things because it is in them your strength lies."

Friday, June 20, 2014

Not The Same - EVD/Shunt Revision Homecoming

Dr. R made rounds on Thursday and chatted with us a bit that morning.  We all agreed that if Meagan did well, we would probably take her home that day.  While he is careful with his patients, he is also really good about getting patients home to recover, which I love.  As the morning went on, Meagan slept.  She slept and slept until about mid day.  She started to stir, so I looked over at her bed and saw her holding her head - my heart sank because I know that behavior so well by now - she was going to get sick.  Sure enough, within seconds, Meagan projectile vomited all over the bed.  The nurses came in to help me and noticed Meagan was really lethargic.  Her eyes were glassy and she just looked "sick."  I began to worry it was going to be a repeat trip to the OR.  We tried to sit Meagan up, but she would only say "no no no!" and keep her eyes closed.  She drifted off back to sleep, even when we were cleaning her up.  She slept and slept again.  The nurse was very good about coming back to check on her.  She just didn't like Meagan's overall behavior, and neither did I.  She decided to give Dr. R a call and just let him know.

It was now the afternoon.  Within a few minutes of the page, Dr. R was coming down the hallway.  As he turned to come in to our room, Meagan literally woke up, sat up, and pointed at him with the most ornery grin I have seen to date.  Dr. R immediately smiled knowing it was going to be ok, but at the same time, he and I were also both so frustrated with her! "Meagan!" Dr R said in a 'scolding' yet humorous tone.  I was right there with him. He did go ahead and look her over and what he noticed was her belly was distended.  It was quite large and also tense.  Dr. R concluded that her belly was just adjusting to absorbing the new fluid levels from her new shunt system... and had also just had over a week where it was not doing so since we had her on an outside drain.  He said he would watch her for the afternoon and if all went well, that was probably the culprit and we could still go home.

Meagan did great the rest of the afternoon.  She was happy, smiling, being silly, babbling, and sitting up all over her bed.  Dr. R and Blair came back and it was obvious we were going home that day. They were all smiles as they came in and Meagan was completely happy.  Dr. R said he knows me well enough he was comfortable letting us go home if I was comfortable, and that her belly should regulate soon enough with time to all the changes with her new shunt.   He said if anything were to happen to of course come right back in and he would look at her.  I was completely fine with that and so we started packing up to go. Before Dr. R and Blair left, I had two thank you cards for them.. and of course those weren't complete without holding up our Hershey bar tradition.  (If you aren't caught up on that tradition, click HERE and it is explained at the end of that entry.)  As they left the room Meagan frantically waved good bye.  Meagan said loudly "Bye Elsa Blair!" to Blair... and waved and blew a kiss to Dr. R.  I asked her "Can you say Dr. Reisner?" Meagan said, in a barely audible whispered voice "Reisssnerrrr."  It was hilarious. I tried to see if I could get her to say both names on video to show them at her follow up appointment - she did pretty well, but she still whispers Dr. R's name.  Why, I have no clue, but it makes me smile.

Since coming home, Meagan is right back in to her normal routine.  She is playing with her sisters, exploring her toys, scooching around on the floor, and chatting up a storm.  Her speech is still really taking off. Physically, she is still recovering from a 2 week hospital stay and two brain surgeries... so I'm not evaluating any of her motor skills as of yet.  But considering all she's been through these last two weeks, overall, I do feel she is stronger.  She is back to drinking her bottles, and is even drinking an ounce or so more than she used to the last few months.  She seems to be wanting to do more on her belly and her knees and is trying to even pop up onto her knees.  More importantly, I have seen no pain episodes since she has been at this new pressure....I'm praying hard that they stay away for good.  So we will see where this leads in the next few weeks when she is even further through recovery and back in to her PT schedule.

Megs playing with her toys.
One thing we always learn after lengthy hospital stays is what an important piece of our day to day Meagan is.  To all of us.  With her gone and me with her, it's just not the same.  The girls don't feel as much peace at home, I don't feel as settled being out of our routine, and Brian is more stressed trying to hold the fort down without me...and of course misses his little Megs.  It's always such a wonderful feeling to get home and watch Meagan get back in to her comfort zone... and watch her sisters relax and just emit the happiness they feel that Meagan is finally home.  Kaitlin said to me, "Mom, when Meagan isn't here, nothing is right.  Things get crazy, and I get scared, and I miss her......it's just not the same........."  Boy isn't that the truth.  And are we ever grateful that she is right back home with us where she belongs.  Hopefully, for a very long time.

Wednesday, June 18, 2014

EVD day 10 - Surgery Results - Uncharted Territory

Meagan decided the night before surgery was the perfect time to party.  I was of course glad to see her so happy, but, the 20 hours days she was pulling were definitely taking a toll.  I was exhausted! It was great though to see her so carefree and silly.  I hadn't seen her be like that for so many hours at a time in months.  We had lots of snuggles and lots of laughs... it was a long, but, rewarding night.

The good thing about her being up all night is that she slept a good part of the next day.  This was a blessing in disguise because Megs had to be NPO (no food/formula) after midnight, so the longer she slept the next day was actually better.  Then she wouldn't be up and hungry all day. Dr. R spoke to me briefly about the plan for Meagan's surgery.  He would put in a high pressure valve to keep her pressure level consistent with the level we had on her EVD but in succession with that he would put a programmable valve.  He mentioned her possibly needing a third valve but said we would play that one by ear based on how she did.  We didn't chat long - he had some emergencies come in that had bumped our surgery back a few hours.  As frustrating as it is to wait, emergencies are never fun and of course our hearts went out to those families.  We hope all is ok with their children.

 Brian made his way over from work to wait with me.  We talked and sat and enjoyed time with Meagan.  She even got in a quick nap with daddy.  Finally around 4pm we got the call that Dr. R was ready for Megs.  She got her Versed from the nurse and we made our way to the pre op room at the OR.  Meagan was feeling relaxed by then from the Versed and noticed the large screen in the pre op room.  She looked at it, and said in the funniest voice ever, "Mama, I wanna watch Frozen."  It was so cute - I wish I had caught it on camera! Our nurse that day got such a kick out of that and promised Megs she could watch Frozen after surgery.

Megs giving us all a heart attack trying to go after her EVD drain. 
Um, no Megs.

Chillin with daddy before her big afternoon. 

Once we met with the anesthesiologist and the OR nurse, Dr. R came in one more time.  He asked if we had any questions and chatted with us a bit more about the plan.  He was very straight forward with us about the unique case Meagan presented and we appreciated that.  He may have not seen a kid like Meagan before, but, we had full trust in his skills and knowledge to handle her case.  Soon the OR nurse came back with the stretcher, and Meagan was off to surgery.  What was so interesting about the time between pre op and her going back to the OR was the amount of fluid that built up in such a short amount of time.  Meagan of course had to be clamped off the drain for the time being, but even in those few minutes she had gone from full soft fontanels and a happy mood to bulging hard fontanels and literal dry heaving.  It was an eye opener as to how reliant Meagan really is on that shunt, and also good to know her severe reactions for any problems in the future.

While she was in surgery, Brian and I decided to walk around.  We went to the gift shop and found the perfect balloon for Megs - one with Anna and Elsa from Frozen.  We walked it back to the room and then decided to go sit outside and eat ice cream while we waited.  We needed to pass the time somehow and that sounded like a great idea.  We made our way to the cafeteria, got our ice cream, and sat outside.  We had some good conversation, and also some nervous laughter.  Meagan has had much longer and more invasive surgeries in the past, but it's funny how nervous I felt for this one.  Probably the idea that this was all new along with the fact that the results are such a toss up got to me.  I'm normally pretty stoic but I was definitely feeling butterflies in my stomach the whole time Meagan was in surgery.   Brian and I captured a moment on camera (as we rarely have pictures together lately!) It wasn't until I looked at the picture after the fact that I noticed the real exhaustion and worry in both of our faces.  I guess we don't hide it that well all the time.

A few hours later, as we were sitting in Meagan's room, we saw Dr. R come by the window and into our room.  He said the surgery had gone well and he was happy with everything.  We were very relieved to hear that. He also told us he was astounded at the amount of fluid little Megs produced.  Besides lacking a proper way to drain her fluid, (her problem from birth) it appeared Megs was also a huge producer of CSF - all of this makes a lot of sense as to why she ended up with the problems she did.  Saying she's a tricky kid to balance all this out is an understatement. Balancing both kinds of hydro in a super sensitive kid like Meagan is definitely a challenge.  No wonder the slightest changes would produce such symptoms in her daily life.

Dr. R said because of the nature of the shunt system he designed, and Meagan's size..etc..etc.. he felt she was too fragile to stay on the Neuro floor post op.  He said he would feel better if she were in the PICU, and we were in agreement with that.  The Neuro floor nurses were disappointed they wouldn't have little Megs that night, but understood it was safer for her to be upstairs.  They were very nice, though, and said as long as they didn't get really busy they would hold our same room for us.  

We made our way upstairs to wait for Megs.  As soon as she was settled, the nurse said they would come and get us.  Well that happened a little sooner than we thought.  Apparently, as they were trying to get her settled in, Meagan woke up and asked for me, so the nurses complied and came and got me early.  Stubborn Megs - knows what she wants even post op! Megs was resting comfortably when I saw her and looked great for just coming out of surgery.  She peeked her eyes open a few times but mostly stayed asleep.  Her head incisions looked great, but everytime she tried to shift herself, she wimpered and acted like she was in pain.  Her hand would go up to her right shoulder and try to hit it.  When I looked over at it, I noticed she had a neck incision.  Dr. R explained that due to her small size, a neck incision was needed to help place that second shunt valve properly.  The skin there is just very sensitive, and it's an odd position, so I asked the nurse for Meagan to have some pain meds so she could drift off to a better sleep.  As soon as Megs had her pain meds, she fell asleep and slept the next 8 hours.

Meagan woke up whimpering again.  Her pain meds had lapsed so I called the nurse.  Meanwhile, Dr. R stopped by and said all looked good to him so he would release us back to the Neuro floor.  I was very glad to hear this and off we went back to our room.  Apparently the nurses were competing to see who got to come back and take care of Meagan - as a parent, you like to hear this because when you cannot help your child, you want people with you who truly care about your child.  The nurses here do and have been really wonderful.  As soon as we were back in our old room, Meagan seemed to almost relax a little bit.  I think it really helped her mental recovery to be back in the same place she had been for 9 days.  She even recognized her nurse and when she was finished giving her meds, Meagan looked at her and said "Fank you," even adding on the nurse's name.  She's just too much.

Later in the day, we had a visit from Meagan's Aunt and two cousins as they made their way out of town.  My mother in law was leaving from helping us the past week and she was riding back with them.  They stopped by to say hello and visit Meagan.  Immediately Megs lit up at the sight of her cousins and really enjoyed her visit.  She also got some more balloons from a far away Hydro buddy in Texas and loved playing with the strings.  Matter of fact, she even fell asleep holding on to them.

Waking up in her old room

 Sitting up! Loving her cousins!

Lots of special balloons for a special girl

Out...with the balloons... :)

As the day went on, the nurses and I decided to switch Meagan completely off of the pain med and go with Motrin only.. just to see how she did.  That way if her pain was in control with the Motrin it got us one step closer to going home.  Meagan did great with the Motrin - she was happy, sitting up, interacting with us, and being silly.  You could tell her incisions still hurt if she turned too quickly, or tried to use her arms to scooch forward and would stop and wince, but, overall she was very happy. 

Not long after Meagan woke up, her nurse came in and said she had a surprise for Meagan.  From behind her back she pulled out the movie "Frozen" and asked Meagan if she wanted to watch it.  Meagan lit up and was smiling.  I was smiling too at the fact that her nurse had remembered her pre op request from the day before. 

Meagan continued to be happy the rest of the evening.  I was glad  because her best friend Claire was able to come and visit!Brad and Amy, our friends here ( who you remember from many blog posts ago who first held Megs for us in the NICU) stopped by for a visit and brought dinner.  We sat around and chatted, enjoying our meal, while Meagan and Claire had a slumber party watching Frozen.  Meagan was even excited to show Claire all her balloons and was sharing very nicely. 

Brad and Amy left after a little while to get Claire home for bed just as it got near the end of Meagan's dosage.  It was actually good timing because it was  like a switch was flipped in Megs.  She got extremely irritable, started crying, and was almost "frozen" on her pillow and couldn't move.  It was clear although she was good on the Motrin, she could not stand any sort of lapse.  At this point the nurses decided to go ahead and continue the Motrin, but alternate it with Tylenol so she had better more consistent pain control.  She seemed to do well with that, so the plan is to continue that through the night.  

When Dr. R stopped by earlier in the evening, we had a long conversation.  Overall, he was still very happy with the result - her fontanel was full now, but soft... Meagan's mood (taking out the post op pain) was consistent with her mood over the weekend, and the incision sites looked great. A lot of the true result will be revealed once we get Megs back home and doing her normal day to day things.  These next few weeks will be a big tell tale time for Meagan.... surpassing the post op pain, bypassing any infection risk, and ultimately, getting back in to her routine and seeing how she does.  I'm very hopeful we turned a huge corner with Meagan these last two weeks.  We learned so much and the EVD revealed so many details about how specifically Meagan's hydro has manifested, that I think even if we have future bumps in the road, they will be more navigable because of this process.  

This was definitely a journey of uncharted territory, admitted honestly by me, Brian, and Dr. R alike.  But isn't that just life?  Anything we do is uncharted territory to a degree.  Going to school, getting a job, getting married, having children, starting a business, believing in a friend..etc..etc.. the list is endless.  But we do all these things anyway not sure of the outcome.  The situation with Meagan, albeit a little more intense, is really no different.  This is just our version of uncharted territory.  But when you have faith in God and rely on Him, you can find the support of family and friends and expertise and trust of a good surgeon to have a really great team can come together to navigate the unknown together.  We are so lucky to have such wonderful faith, family and friends who have lifted us up and as importantly, an incredible Neurosugeon who was willing to step outside the box and take a chance on Meagan.  I know the mental stress this particular process has caused him,  and the fact that he stuck with it and came up with an idea is not only impressive, but humbling.  

As parents, we know our children rely on us for everything. Feeding, clothing, medical care, comfort, safety..etc.  With a child like Meagan, yes, she relies on us for those things, but through us, she also relies on her neurosurgeon to help her get through life successfully.  It's part of our responsibility as parents to find the right surgeon with whom we can trust Meagan.  We had a hunch this would be the case from his first phrases to us when we met him  "She has a problem.  Here's how we navigate it.  And we see what she can do...."  Dr. R has proven that he is that person over many occasions, but especially these last few weeks.  Diving in to a case of a complicated kid like Meagan isn't easy, especially when she has already been through so much,  but he did.  Spending time with our family on hospital stays is hard with a busy schedule, but he does. Answering our questions is repetitive, but he answers them. And sometimes, you just need that "down time" with your child's doctor - the almost nonsensical and serious conversations all at wrapped in to one, to connect to your child's surgeon on a human level and realize the importance of the relationship.  The medical professionals with whom you trust your children become more than just "this doctor" or "that surgeon"... they become almost like family.  And Dr. R is that to us.  

We know this may not be "the" answer to it all - but it's a great start.  For the first time in forever,  (don't worry, I won't break into Frozen songs)... I feel like we are all, as a team, really getting to know Meagan's tendencies and how her hydro will have to be managed long term.  These last few weeks have been tough and drawn out, but in my opinion, very successful.  Navigating uncharted territory is tough and taxing.  It's lots of ups and downs and bright moments with dark moments intertwined.  But I know we can do it. With God's help, Brian, me, and Dr. R can tackle this together as a team.   I wouldn't have it any other way. And I don't think this little face would either.......

Meagan says "Bring it on." She's ready!

Monday, June 16, 2014

EVD day 8 - Clean Up and Prep

Meagan decided last night it was time to party, so she really didn't go to sleep until after 3am.  She was still sleeping this morning for quite a while when a priest knocked on the door.  I had called the day before to try and get Communion but no one could come.  Luckily, this priest could come this morning and he brought me Communion.  Even better, he administered the Sacrament of Anointing of the Sick to Meagan to help prepare her for surgery this week. It was incredible to witness and I felt very blessed to have her in such good spiritual hands.

Shortly after, CT called and said they were ready for her scan.  The nurse and I walked her to CT.  The scan went quickly and we returned to Meagan's room.  She was a bit fussy but she was also tired so we got her comfortable and as she was dozing off I told the nurses I was going to get some breakfast while they were there to stay with her. When I came back from the cafeteria, she was still upset and I noticed her door was open - as I rounded the corner I could see the poor kid was very upset and getting her gown changed by the nurses.  She had projectile vomited everywhere.  The nurse and tech continued to change out her bed while I held her in my lap.  Soon after we got her all settled in bed again and she fell right back to sleep.  She looked very comfortable again.

Not feeling well 

Sound asleep after getting cleaned up

When Meagan woke up, she was right back to herself.  Blair and Dr. R had been notified of the incident but they said as long as she woke up ok, they were fine with it.  Luckily, Meagan did wake up well.  She hadn't been sick in a few days so perhaps just the fatigue and trip to CT stressed her out enough to make her sick.  Her head was puffy but relaxed again and she had an appetite. I got her a bottle and she relaxed while drinking her Pediasure and watching cartoons.  Her hair cracked me up - it was electric! 

A little while later, a volunteer with service dogs walked by Meagan's room.  He stopped in and asked if Meagan would like to see the dog. Um, yes!! Meagan LOVES dogs.  The man brought the dog over to the bed, but it was hard for Meagan to reach and pet the dog since she couldn't move as much because of her drain.  The man then asked me if Meagan would freak out if the dog jumped all the way on to the bed.  I said nope! 

So up onto the bed went the dog.  Its name was Ballys and it was the cutest Lab/Golden Retriever mix.  Meagan was in HEAVEN! She was completely happy and loved having the dog on the bed with her.  She couldn't stop smiling ear to ear and also loved leaning over and laying on its back. It was the highlight of her day!!

A pre op doctor stopped by the room saying Dr. R had slotted Meagan for surgery tomorrow. They got all the pre op questions finished and all was prepared for tomorrow's procedure.  Dr. R stopped in later to touch base and said we would talk detailed plans in the morning - he was going into emergency surgery so we would have to talk in the morning. I'm fine with that and I appreciate him stopping by.  His PA, Blair, stopped by also to say hi.  She has long blonde hair like Elsa from Frozen, so Meagan kept saying "Hi Elsa Blair".... it was hilarious! She was pretty smitten that "Elsa" was in her room.  Blair stayed and played for a little while which was nice. 
The only other wrinkle in the day besides the morning sickness was Meagan's IV going bad...again.  Her day old IV (that had replaced the first one from last Monday) was already bad.  It was getting a red line up the IV tract and every time they gave meds or flushed the line, Meagan would scream in pain.  The nurse called the IV team to come look at it and sure enough, it was bad.  This time the IV team said they would use the ultrasound machine to get a really deep and larger vein for her next IV.  I was happy about this because the superficial hand and foot IV's never stay in (as was proven with the one we just lost) and I prefer to have her stuck as few times as possible.  The IV team nurses were awesome - they did a great job and were so quick and painless for Meagan.  I love how they are so good at what they do to ease the pain of the patient.  Once the new IV was set up and good to go, they left and Meagan got to relax with a little nap while she watched Finding Nemo.

Don't worry, she's not in pain - she just cries anyone touches her :) The IV team was so good using an ultrasound to find the perfect vein so the IV would stay in really well.  They were amazing. 

Today was a lot of clean up and prep for surgery tomorrow.  Emotionally, physically, and spiritually, I feel like Meagan is in a really good place.  Emotionally, I am so ready for tomorrow - I am anxious to speak with Dr. R in the morning and get details as to what shunt system he has designed for Meagan and how we will go about helping her stay stable for a lot longer. This has been a long time coming. Spiritually I feel Meagan is stronger for tomorrow after receiving her Sacrament. God and our Catholic faith are such an important part of her life, that I want to always remember to give her the gifts that are available from that faith. And physically,  I was excited to see her happy and so interactive with the nurses and doctors. Everyone was cracking up at her antics and her silliness, and of course just relishing the sweet moments she would offer.  Even Blair came in again before she left and gave Megs a head rub and talked to her for a while.  Those moments mean so much, especially when you entrust your child to these people time and time again.  Dr. R said to me today "It seems a lot of people are drawn to Meagan from what I have heard today..."  I don't disagree....She is pretty special.

Sunday, June 15, 2014

EVD day 7 - Father's Day!!

Becoming a dad isn't a job... it's a vocation....and Brian took it on with open arms....

... he talked to our babies even if he wasn't sure they understand..... 

He actually changed diapers and did the "dirty work" more than you know..... 

...he took in the busy times at family beach vacations....

....just as much as those quiet moments of silence...... 

...studying for the CPA was really tough... 
but doing it without his children wasn't an option..... 

...and every time we had a new child, he gave that child special time..... 

...one by one he cherished the gifts God had given him.... 

 ..he taught them things from very young ages with confidence.....

...but also had moments he was scared too...not of the challenge...
but of providing for the people that meant most to him..... 

..when we were surprised with a special child, he didn't blink. 
He took her hand when I couldn't..... 

...held her when I couldn't..... 

...and reassured her when I couldn't..... 

...and gave her the courage to push through and thrive...

..and when challenges arise with Megs, he handles them with a smile.....

and always tries to make Meagan smile to help her through the pain...

..he has to be mom and dad when Meagan is in the hospital....

...and makes sure the older girls still have fun....

through teaching.....

...and adventure....

...he lifts them up....

..he stays strong and silly..

...loving and tender...

...there are no gifts we can possibly give him....

...that come close to the gift he is to us....

..so this Father's Day, we want to say thank you to this man, this husband, this father

and let's tell the truth about fathers....they are champs....

Brian is smart, caring, loving, and hands on... he helps, he hurts, he laughs, and he succeeds. He's our champ, and we are so thankful for him.

Happy Father's Day Brian!!!