Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, October 26, 2016

Which time?

I was having a conversation with Reilly and realizing this was the week Meagan came home from the NICU, I said "remember when Meagan came home from the hospital?" Reilly's answer was "which time?"

Blah.. Such a tough answer.  But it has been the  reality for her and her sisters the last 5+ years.  In and out. In and out.  Meagan has had so much go on in her short little life.  I always have to remember that there are 4 (and now 5!) other little people in our house who are also affected by that.  Sometimes it gives me pause.  I remember those words clearly from my perinatologist when I refused termination .... "but... you have four other children!"..... I have a small flash of sadness for all my other girls go through.... and then.... I get mad. How dare they question what my kids would be capable of handling.

How many 11 1/2 year old's have to ask "which" hospital stay I'm speaking of? Probably none in Reilly's class, and in the grand scheme of 11  1/2 year olds, not many at all have to deal with a quarter of the hardship Reilly has seen firsthand.  But - my anger then melts in to peace.  PEACE!? What's that?  With all that goes on? All the uncertainty, stress and worry? Yes, peace.  You see, while it really stinks that Reilly (and her other sisters) have to know about hospital stays, and seizures, and delays, and worry...... there is always a positive to that.  Because of all the "adult" things they have had to deal with, they also have had to grow up as much more sensitive kids.  Much more in tune with the plight of others, the challenges others may face, and actually live out my "rule" of the house to "always be kind."  

So now as I think about my daughter's earlier question of "which time....".....instead of remembering a homecoming from a hospital stay, I think of.....

....which time Reilly taught Meagan how to hold a pretend microphone and belt her little heart out in song..........

....which time Kaitlin cradled Meagan's head in her hand, hurting from headache, and read to her to distract her from the pain......

....which time Meagan had a really tired day and couldn't walk... so Maura scooted with her to "make her feel like she belonged..."

...which time Kaitlin helped Meagan make a basket at the Native American Museum in DC..
.so she could also learn

....which time Reilly stopped her intense practice because her sister asked for a drink...
and she wanted her to be part of the process....

....which time Anna shared the Kindle and when Meagan couldn't manage,
helped her navigate the game.....

....which time Meagan's favorite song came on, and Maura asked Meagan to
have their own dance party......

....which time the girls played pretend doctors, and made
something typically scary for Meagan, a fun game of pretend....

....which time Meagan desperately wanted to dress herself....and Reilly
helped her arms in her shirt saying "great job Meagan, you did it!"

...which time the girls have given up countless hours with mommy, daddy, friends,
school events, dance classes, and anything else that brings them joy to
walk in to a cold hospital just to give their sister the love she shows them everyday.....

Five years ago this week was the first week Meagan was able to come home, feel our warmth in our house, be around her sisters without beeps and wires and nurses, and just settle in to our daily life as a family.  But, it was also the week that my other girls' lives changed forever.  Their realm of normal was forever changed to something unique, and something very few other kids their age would truly understand or feel empathy towards. 

Reilly answering "which time" really showed the maturity she has gained in the last 5 years of being Meagan's oldest sister. It has led her and my other girls to ask really tough and thought provoking questions.  One they asked the other day was "why does a "good life" always have to be a life that's painted with rainbows and roses?"  The answer is, it doesn't.  And they know that it's just not the case. 

Ours is a different life than a lot of our friends.  Our kids have a different perspective than lots of their friends.  But, that's ok.  As much as I missed my sweet girls on the countless nights at CHOA, as much as I felt the 'mom guilt' over the many events I had to forego to make sure their sister was safe, as much as the sacrifices we have had to make as a family to just stay above water that other families couldn't possibly comprehend have caused stress or worry..... I would not change one moment.  Not one.

Recently, I have seen Meagan imitating these behaviors - comforting her sister when sick, and now warming up to the idea of being a big sister herself with the birth of Cara.  Sometimes, she is a little rough on Cara too, but, that is typical of older siblings right? Nonetheless, no one in our family is "worse off" for her being present.  I can tell you one thing for certain - I cannot think of "which time" it would have been easier on us to not have Meagan in our lives. 

I think the biggest lesson Meagan has taught me... is to not doubt the strength of a family.  Sure, it's not what I originally pictured ..... but let's be honest.... what ever turns out the way we originally planned? And even if I could go back, I wouldn't change it. 

My girls, albeit 'young,' have the fortitude of 50 adults. They have not only grown as siblings, but more importantly as compassionate human beings.  They understand the concept of being kind to those different than they are.......they understand that all people have worth and dignity.  They have a very clear vision as to what is right and wrong, and they know how to be independent when mommy or daddy cannot be there in an emergency.  This has started to transfer to motivation well beyond everyday life.  Reilly conquered a 24 mile, 3 day hike at merely 11 years old.  The older 4 girls regularly practice their dancing on their own and keep up a practice chart I could only beg half of my high school students to accomplish.  They let things roll of their back better than a seasoned adult.   They wear their emotions on their sleeve to fuel their passions....... they aren't afraid to "feel," and they persevere even in the most difficult of circumstances.

I don't doubt at times it is difficult to be Meagan's sister.  I think Cara will realize this as she grows and starts to recognize some of the struggles of being a special needs sibling.  So tonight as I reflect on Reilly's answer of "which time?" when asked about Meagan's homecoming 5 years ago this week....... I think she has a point.  Which time? Which time was really the most important that Meagan was home with us?

Every time.  Every time her sweet smile, stubborn attitude, and persistent drive entered these halls was the best time.  Every time was a special time.  And we will continue to have special times.  Every day we have with her sweet soul is a gift - a gift full of continuous lessons my girls will continue to take with them each year they navigate this journey alongside myself and Brian.

Five years ago our lives changed forever as Meagan finally came through the doors of our home.  But five years ago, we didn't realize we were already changed.  Because Meagan had already entered the doors of our hearts.....

Thursday, September 29, 2016

The 5 Year Lesson

It's hard to believe it has been a whole 5 years since Meagan was born. But, as they say, time flies when you're having fun.  Fun? Probably not the word you would use to describe our last few months, right? We have had some harrowing times recently with Megs and those have not been fun.  As a matter of fact, they have been downright scary.  However, here we are, safely past her 5th birthday and on to year number 6! And although I wouldn't characterize our last few months as "fun" with all that has happened, I can't think about Meagan without thinking of fun. 

Meagan has come a long way in 5 years.  She has started walking this last year, talking more, eating more things, and overall being more curious about life.  Those are all big changes, and we are grateful for all of her many positive strides....but I think the biggest lesson we have learned in her 5 years with us is that while Meagan has come a long way, we have come a longer way.  As a family, as parents, and as humans.  Meagan has taught us how to have fun and how to love.  Priceless lessons we would otherwise have never learned.
When we were gifted Meagan as our child, (and yes, she is a gift, as are all our children), there were a lot of questions.  There still are, to be honest.  As a matter of fact, we probably have more questions now about her future than we did when she was born.  As she grows, life gets complicated, and so do her challenges.  These last few months have been particularly hard because they were the first few times we literally felt helpless and were very scared she may not come home with us.  Our girls, for the first time, felt the fear of their sister not being with them.  But those experiences have made us realize how strong we are as a family and how much Meagan means to us as a unit.  Because Meagan is fun.  And our family wouldn't be fun without her.
In Meagan's 5 short years, she has taught us how to laugh in serious situations.  She has taught us how to think freely without reservation.  She has taught us how to ask questions, answer without a filter, and say what's on our mind.  Meagan has taught us humor, compassion, and friendship.  Most of all, Meagan has taught us how to love unconditionally.  She has taught us judgement-free, unfiltered, pure unconditional love.  Of all Meagan's accomplishments, I think this is the most important.
As a parent we always talk about unconditional love.  We love our kids no matter what.  Of course we do.  But we are also human and we still have tiny stigmas that come along with that.  Not Meagan.  She is free of those reservations we struggle to ignore.  I have seen her hug someone after they were mean to her - she being totally unaware of the "mean" but just sensing the person needed a hug.  I have seen her rub her sisters heads when they were sick even though she may be having an off day.  I have seen her snuggle her dad when he's tired.  I have seen her give kisses to her baby sister when she's crying.  Meagan doesn't sit around and analyze whether someone needs love...she just gives it.  Without judgement.  Without hesitation.  Meagan really is love, to the truest definition.

We were blessed this year to have many friends be able to attend Meagan's birthday celebration.  We probably had close to 100 people at the house throughout the day.  The afternoon was filled with laughter, celebration and fun.  Meagan was beaming when everyone sang her "Happy Birthday" and loved seeing all her friends.  She spent the evening Facetiming with her extended family far away and loved talking to her grandparents and aunts, uncles, and cousins.  It was quite a celebration for a 5 year old.  But, as we already know, she isn't your typical 5 year old. She is loved by many.

Life is serious.  It is very serious.  And, we do have to treat many situations with such gravity as they cross our path.  Still fresh in my mind is sitting in the ambulance in Virginia holding Meagan's limp hand as the EMS tried to get her to breathe again....or cradling her on the side of the road covered in vomit as she seized and desperately looking for the ambulance to find us.  These are very serious things that we have lived through with Megs.  However, even in those desperate times, all I could think about was missing my fun little girl... her smiles, her sweet nature and her love.  Even in serious situations, Meagan had helped me to think about the positive.  She showed me why we trudge through all the serious - because the fun times are what make it all worth it.

I am so excited to see what the next 5 years hold for sweet Meagan.  Surely there will be more difficulty ahead.  But we know that, right? I just hope we can get through it all with as much poise and love as she has helped us manifest up until this point.  The world has enough darkness.  I'm so thankful that Meagan is here to keep spreading her light.  Her beautiful, judgement free light of love.

Looking back, I now see that it's not Meagan who has come a long way in 5 years...but really the rest of us, who have been lucky enough to encounter Meagan's love if even for a moment.  We have so much more to learn from her little soul, and I cannot wait to open my heart to those lessons. I hope you will too.

Sunday, September 11, 2016

It's Complicated....part 2

I'm sure if you're like me, whenever something doesn't go as planned you always wonder about the "what ifs".... leaving later than planned, taking a different flight, or having something delay you leaving somewhere that proves to be beneficial.  In hindsight, that's exactly what went through my head about what happened on Saturday.
As I said, there was a delay finalizing Meagan's new rescue medication.  I decided to go ahead and get Meagan dressed.  I realized it had been several hours and she was still sleeping so getting her dressed would be good prep for going home.  Typically even if she's tired or loopy after a hospital event, she realizes regular clothes mean "going home" and will perk up a bit.  When I lifted her off her pillow to put her shirt on, she didn't even wake up.  Matter of fact, she was really dead weight.  I thought she was super tired so I continued to dress her and then packed up a few more things.  It was at this point that I noticed her monitors going off every now and then.  It was saying she was having momentary apneas (stopping breathing).  It caught my attention, but, I have had enough hospital stays with her to know that the monitors are also super sensitive and sometimes they do not always pick up the proper signal or breaths etc.  Nonetheless, it was odd she still wasn't waking with more energy, so I went over to see her.  Her open defects were huge.  Full and hard like she had a fully closed skull.  Now my alarms went off - something was not right.  She also looked so pale she was almost a greenish color.  Luckily, three nurses who have helped us with Meagan since she was 8 weeks old happened to be on that day and right outside our room at the nurses station.  Our nurse was wonderful but she had only worked with Meagan that one day.  I grabbed our three nurse friends and asked them to look at Meagan.  It didn't take more than one peek in the room for them to immediately realize she was not herself.  At this point, she was having longer apnea spells and was not breathing in again unless her back was vigorously rubbed.  Her heart rate was also dropping to 60 and not recovering well.  Her head was still hard - she was under severe pressure.  The nurses immediately called the rapid response team who came to assess Meagan.  Before I knew it she was being rushed up to the PICU.  I had Cara with me still (since she is still nursing, she has just stayed with me if Megs is in hospital).. but siblings cannot stay in the ICU so I had to call Brian to come back and get her to take her home.  Luckily one of our close nurse friends was there and instead of making me wait to see Megs, took Cara with her back to first floor to hang out with the nurses and wait for Brian so I could go ahead and get to Meagan.
When I walked in, there were a lot of people in her room of course.  Her heart rate was now in the 50's and she was still having frequent apnea and would not rouse.  Her head was the same and so neurosurgery was called. The on call came in and assessed the situation.  The resident had done a tap of the shunt (where they pull fluid) and it didn't come easily.... there was high suspicion that she would need surgery but the on call insisted on trying to turn down her shunt setting first (faster flow).  I agreed because of course if possible, I want to avoid surgery.  But in my gut I just knew we were headed there.
 After her shunt was turned down, I waited for improvement.  Typically with Meagan, you see a severe and rapid reaction.  She will immediately show you if it's going to help or not.  Sometimes we give 1-2 hours to see how things go, which is fair, and then if things improve, we move on.  If they don't, she goes to the OR.  This time, we waited.  And waited.   And waited.  1, 2, 3, and 4 hours passed.  Meagan was still having apnea and bradycardia...and then she started to writhe in her bed.  She wouldn't take a breath unless I or a nurse vigorously rubbed her back, legs, and torso to jostle her in to breathing.  She would roll and get puffy cheeks - I knew that meant she was going to vomit.  Pressure puke, as we so "professionally" call it.  And sure enough within mintues, she did.  Everywhere.
By this time, Brian had made it back to the hospital thanks to a friend staying with the kids at home.  Meagan continued to projectile vomit, this time it was a TON.  The nurses rushed in and were wonderful to clean her up.  They even wiped her down with pre-surgical wipes because it was obvious to them she would need to go to the OR.  They also continued to  monitor her vitals which were now deteriorating again.  Her heart rate was between 48 and 55.... she was continuing to have apnea, and now she was vomiting.  Her head? Still hard as a rock.  I was getting very concerned and finally asked the nurse to please call the on call NSG (neurosurgeon) again.  Word came back that he was in surgery with another case.  The hours Meagan had sat in her condition started to wear on me - I felt he did not realize how bad she had been all evening....because if he did, I don't see how anyone with surgical knowledge or a heart could leave this child in this condition for hours on end.  In all my years with her, in all my hospital stays and surgery needs, I had never seen her this badly ... I had never seen her in such a state with no relief to need the OR.  It sounds strange, right? Praying for someone you are frustrated with to take your daughter to surgery.. let alone brain surgery.  But she needed it badly.  I knew it and it really needed to happen soon. 
Finally,  the on call came down to look at Meagan... still the same but deteriorating and still vomiting.  She had so much pain - she was moaning and writhing in her bed still as if she was trying to get away from something or the pain and would press her head against the side of her bed.  He agreed she needed to go to surgery...FINALLY.   Meagan was prepped for surgery and taken to the OR.  1am.  It was about darn time.  Brian and I walked with the PICU nurses as they rushed her in, we signed the papers, and off she went.  Then, we waited.
A few hours later, the on call walked in to our room.  He explained that her top valve, the high pressure valve, had a rip in it and was not working correctly.  He told us he replaced the top valve and that hopefully she would start to feel better. Shortly after, the OR nurses brought Meagan back to the room.  She was rough, but, stable.  Once all the vitals and checks and notes were finished, I crawled in to bed with her and snuggled.  Her hair was matted with three sets of incisions and staples and gooey medicine, her body was weak from the anesthesia and her coloring was faded....but she was there.  She had come back to fight another day and I just hugged her and thanked God for my sweet baby girl.
The next day we already saw improvements.  Meagan's vitals were stable (for the most part), she was starting to talk again and her coloring was coming back.  We decided it was safe enough to move her down to the neuro floor that afternoon.  Her heart rate continued to dip a little lower than desired....but if my body had been under the pressure she had endured those 10 hours, I would be the same way. They decided to watch her overnight and if all was ok, she could be discharged the next day. I was glad because that meant 1. We would feel a lot safer taking her home...and 2. Dr. R would be back the next day so I could discuss with him the events of the weekend and concerns I had going forward.
Tuesday morning, Meagan didn't really want to get up.  I knew she was tired, but I wanted to be sure she was ok to go home.  I tried to wake her up, her favorite nurses came to visit and I tried to bribe her with going to the hospital store.  All she would say is "I want to sleep." I finally decided I needed to make her get in the wheelchair and go walk around for a little bit. While the nurse was seeking out a wheelchair, Dr. R and Blaire came by.  We chatted about what had happened and I got to speak bluntly about my concerns and how things had been handled the previous day - I will leave all of the details between Dr. R and me, as it should be.  But know a serious conversation was had - and I think, or at least hope, we came to a mutual agreement and understanding on Meagan and the "status quo" when it comes to her treatment, especially regarding the hours she sat under pressure.  We were able to share perspectives, and I pray that eyes were opened a bit more to what we as the actual parents go through and have to endure .......and why it is SO imperative for our medical team to trust our instincts when it comes to these amazing kiddos. No one knows Meagan better than I do.  And when something is wrong, that trust has to be between the surgical staff and me there so I can get her the help she needs efficiently and quickly.   We will return in a few weeks to get Meagan's staples out, so I will ask any more unresolved questions at that point.

This past Thursday, I was driving the girls to dance class - instead of our usual back and forth about school, or talking about something irrelevant, or singing loudly to music on the radio, there was an eerie hesitance in my car.  The girls were randomly mentioning what they remembered from the week before.  As I drove by the highway connector, I saw the very spot I was with Meagan laying on the ground vomiting and seizing while we desperately waited for an ambulance that never came.  I saw the exits pass and remembered how each mile seemed to crawl by when I was driving.  Then I happened to look in my rear view mirror.  Meagan was smiling and laughing at something silly Maura was doing.  She was singing along to the songs on the radio, and she was beaming. She had once again, defied a precarious situation, and come out strong and ready to take on life again.

Meagan's latest episodes seem to have a 4 week pattern... I'm hoping with this valve fix, that we have solved the stress on her body which seemed to precede or trigger these events.  I will definitely be holding my breath until the end of September passes with no major events.  Of course, even if it does, I don't think we will all ever be the same.  These last few episodes Meagan has had greatly impacted our family and our security in her stability.  We always promised Megs happiness, love, and life experiences.  We will continue to do our best to ensure our promises stay fulfilled.  But even if the next four weeks pass and we avoid another catastrophic event, I don't think I will ever be the same.  The best I can say to that is....... it's complicated.

We love you Meagan and are thank God everyday that He pulled you through these last few months.  We cannot wait to celebrate your big milestone of turning FIVE in the next few weeks!

Tuesday, September 6, 2016

It's Complicated ... part 1

Ever since Meagan's "big event" in Virginia, she has been doing quite well.  She started back to school with her sisters, loves playing with her friends and loves riding her bus. Once the 4 week mark passed from her Virginia epileptic event, I breathed a sigh of relief.  Perhaps that was a one time occurrence and we were back to her "normal." 
Thursday afternoon, the girls decided to go to the dance studio early to practice and do homework before class.  Reilly had a flight to catch so we decided to head down early to not get caught in all the traffic heading south.  We arrived at the studio and as we were getting out of the car, Meagan looked a little off to me.  Sometimes if she wakes up, or is looking around after a long car ride, she will be a little "foggy" and then once she's acclimated, be just fine.  Unfortunately, that didn't happen. 

I noticed her defect (open area of her skull where it is easy to see increases in intracranial pressure) was huge.  And very hard.  It was so odd because in the days before, her defect was completely sunken in - to the point I even received notes from school about it.  The teachers were concerned how sunken it was.  To see it now bulging with fluid I was concerned something wasn't working correctly.  Here we were, repeating the up and down I had been seeing all summer.  It was reminiscent of when she only had one shunt valve and it never worked correctly.  I wondered if her top valve wasn't working properly.
I sat Meagan up in the middle seat to watch her.  Within moments she projectile vomited everywhere.  Head still hard as a rock.  Pressure.  She looked completely glassy eyed and immediately went limp in my arms.  She continued this cycle of vomiting and being lethargic and I knew she had to go in right away.  I called the dance teacher, a few friends and Brian (who works close to the studio thankfully) and arranged for the older girls to stay there at the studio with Brian while I started on my way to Children's.
Meagan was still completely lethargic.  I know we hear that term all the time ...."my child had a cold and was lethargic all afternoon.." but we also misuse it all the time.  Think overcooked spaghetti noodle - that's how Meagan's entire body was.  It was difficult to get her strapped in her carseat because of her lethargy but I was able to finally get it done.  I pulled out of the studio and hit the road to Children's.  We weren't that far thankfully but it was the afternoon so I was wary of traffic.
About halfway down the road, I noticed Meagan's color looking very bad in my mirror.  I glanced a few more times and then noticed that her right arm, eyes and mouth were seizing.The time was 4:30.   I pulled over on the highway to administer her Diastat  (rescue medication).  She vomited again so I knew I had to call an ambulance or she would start choking when I had to drive.  As I told the operator our location and gave her my number for GPS routing, I pulled Meagan out of her carseat and gave her the Diastat. Nothing happened.  As in, Meagan kept seizing, kept turning grey, and kept vomiting.  Things just got exponentially worse.  I looked at the clock and it had been a good 8 minutes... I asked the operator where the ambulance was and she assured me they would be there soon.  She said she also had called Fire EMS so between the two of them help should be there shortly. 10 minutes.  14 minutes. Nothing.
Finally at 15 minutes, I started to hear sirens.  The operator asked if EMS was there yet - I told her I could hear the sirens and then upon looking, saw they were on the wrong side of the highway.  We were right near an exit so they pulled off and she said they should be coming back around soon.  18 minutes.  19 minutes.  20 minutes.  Nothing.  Meagan was getting much worse.  Her convulsions had now gone in to both arms, both legs, her head, mouth, eyes, face.  She still vomited but only mucous every so many seconds.  She was not responsive to me.  I had to go.  I told the operator please tell police to not pull me over but I have to take my daughter in.  Not to mention cars were flying past at high speeds and Cara was in her carseat inside.  For her safety and especially Meagan's, I could not afford to wait any longer.
I put Meagan back in her carseat - which was even more difficult because now I not only had a limp child, but one actively seizing.  I managed to get her straps clicked in.  They kept slipping out of my fingers because everything was covered in vomit, but we got it done.  I jumped in the front seat of the car and took off.  There was traffic so I just kept praying that it kept moving.  Finally when my GPS said "one mile," I felt a little bit more relieved.  It was the longest mile of my life.  I couldn't see Meagan in her seat because except where she was strapped in, she was completely limp.  Every now and then when I had a chance I would take my foot off the gas pedal, push up off my floor and stretch my head to glance at her face.  I would see her eyes twitching and her head and mouth convulsing.  This is the only time I have been thankful for her seizures because I knew she was still alive if I saw that happening.
I turned in to the emergency driveway. I looked back and Meagan's lips were blue. There were two other cars in front of us when the first in line simply stopped.  The car in front of me and myself slammed on our brakes wondering what was going on.  The first car put on his reverse lights.  Uh, no.  He rolled down his window explaining he meant to go in to the main parking garage so could we all back up for him to move.  I'm typically extremely polite, except when it comes to the safety of my kids being jeopardized.  I rolled down my window and yelled "my daughter is not breathing - MOVE!" I may have had a few other words in that sentence.....  He finally started moving his car again and I raced up the ramp to the ER doors.  I got out, grabbed Cara, grabbed Meagan and walked in the doors.  As soon as the ER nurse saw us, she came and grabbed Meagan and she went straight back to a trauma room.  They laid her on the table and her breaths were very far apart and extremely shallow.  Once they got her situated, you could see her little tummy take in one more breath, and then completely relax and stop.
Immediately the room was swarmed with people - the ER trauma doc, several nurses, respiratory team..etc.  They worked on Meagan for several minutes to stabilize her condition. Her body just was not cooperating with the breaths and her blood gases came back with her CO2 through the roof.  They wanted to intubate her again, but, the ER trauma doc happened to be one we had worked with before.  He said since they had the staff available, he wanted to give Meagan a chance to breathe on her own so they kept respiratory and a nurse breathing for Meagan, while the others administered rescue medications to stop the seizing.  After 3 rescue medication doses, Meagan's seizure finally calmed.  It had been 1 hour and 17 minutes.
Once she was stable, they got a quick CT scan and then we stayed in trauma. The respiratory team kept breathing for Meagan while we gave her body time to come out of the event.  A few hours later she finally started to attempt shallow breaths when respiratory would stop.  This was a hopeful sign so they kept doing what they were doing until we got to a point where Meagan's body picked back up and started breathing again on its own.  At this point it was about 9pm at night. As things continued to calm, the team was comfortable moving us from the trauma room to an ER holding room while we waited for admission.
Meagan was admitted, taken to neuro floor and we settled in for the night. Neurosurgery and Neurology consulted on theories and what to do.  It was decided the next day that although she had improved, we would hang out that day to watch her and then do an MRI the following morning.  It had been a few years, and because of the large shift in her status quo, Dr. R and I agreed it was a perfectly logical non-invasive next step before they let me go home with no answers.  That way we would have a new baseline and go from there on what was best for Meagan. 
Saturday they got her in fairly early.  She went in and out of her MRI without a hitch.  We were told there was nothing pressing and we would go over the results in detail with Dr. R later that week.  We were going to be discharged! I was more comfortable with that knowing the MRI didn't show anything emergent and Meagan had been back to herself, drank a bottle, and was watching cartoons.  I started packing things up and all we were waiting on was the prescription for Meagan's new rescue med (since Diastat had not worked the last two times) to come through. Meagan had drifted off to sleep and then I found out there was a little delay finalizing the new medication plans because they had to find a pharmacy that would distribute it to us.  I also needed a nurse to come teach me how to use the new med so the floor could sign off on it.  That delay would prove a Godsend......

Saturday, June 11, 2016

Dear Dr. K

Dear Dr. K,

Bear with me - it's been five years coming for me to write this letter.  Do you know how long that is? It's about 1, 826 days.  To be honest, you probably don't even remember me, or remember me well.  I know I'm not any more "special" than any other patients you see.  Day in and day out, you see high risk patients....mothers with problems, babies with problems, and for that in particular, I do feel for you.  The job must be demanding and stressful and tough.  I can even see why you might desensitize yourself to situations such as Meagan's and how that may help you cope with the news you have to give to families day in and day out.  But just because I can sympathize, or understand, or try to treat you with respect doesn't mean I agree with you or what happened in our first meeting 5 years ago.
Five years ago, I blissfully went in to my 19 week ultrasound to check anatomy on our 5th daughter.  As the scan concluded, and I saw the large black space where typically I had seen the brain of our other children, and although I was blissful, I was not blissfully unaware.  I knew something was wrong....very wrong....and off I went from my appointment with a pink piece of paper labeled "hydrocephalus" to come and see you for further testing.

After our initial scan, you confirmed that yes, indeed, our daughter did in fact have a severe case of hydrocephalus.  You told us that her brain (what was left of it) was under severe pressure.  You said that she probably would not have a good outcome and that if her hydro was caused genetically, she wouldn't even make it to birth.  What you did not know is that I had already googled, searched, and read all I could about hydrocephalus and while a lot of it was scary, it didn't change the fact that she was still my daughter and I loved her.
When you talked with us about the outcomes for Meagan, you listed all the things she would not be able to do.  You told us she would not walk, talk, smile, coo, move, or do many other things we would expect from our sweet girl.  What you did not know is that it didn't change the fact that she was my daughter and I loved her.
When you suggested we terminate (ie: end her life) due to these circumstances, you told us if we needed time to think (since we were up against the deadline to terminate in our state), we could even go to other states that had later term abortions.  You told us that it would be hard on us, our normal routines and our finances.  You told us that our older four children would suffer to have a sister with such needs.  What you did not know is that it didn't change the fact she was our daughter and I loved her.
When we fought with you over every scan, refusing the amniocentesis, telling us proper measurements of remaining brain tissue, and ultimately signing us off to have my own OB deliver her, you always made sure to tell us the negative.  The can'ts.  The won'ts.  And when we wouldn't listen to you, you sent us to your "genetic counselor"....who was only full of more can'ts, won'ts and nevers. She again asked us what we would do with a child "like Meagan" impacting her four older sisters lives.  What you didn't know is that none of that changed the fact that Meagan was our daughter and I loved her.

Well, here we are.  Five years later, and I would like to tell you about Meagan.  First, I will take your approach - clinical and labels.  Yes, she does have her hardships.  She has had 15 brain surgeries.  She has epilepsy.  She has feeding difficulties and GI troubles.  She has gross motor delays and fine motor delays and cognitive delays.  She has growth problems.  She gets hit harder by illness than her sisters.  She is, well, in a term you will probably understand, 'different.' 

Now let me really tell you about what she is like - meaning her soul, her personality, her being.  Meagan is a complete joy.  Everyone that meets her smiles, laughs, or takes away a sense of love and compassion.  Meagan moves.  She kicked her legs and moved her arms for over four years and then this last Christmas, she just started walking. Granted, she walks a bit like someone who has had a few too many - but we don't care.  She also does use a walker and a wheelchair - but again, we don't care. That's just Megs.   Meagan laughs. She is funny and has a sense of humor to rival the most famous comedians.   Meagan loves.  She loves her sisters, her family and her dog.  She loves her teachers and even those she doesn't know well. She will hug a complete stranger and ask anyone in passing "whats your name?"  Meagan eats. For the last 3 years Meagan was 99% tube fed through her feeding tube - but that's still eating! Recently, her oral eating has suddenly taken off and so now she eats two ways.  I bet you can't do that.  She can.  Meagan plays.  She plays with her sisters, plays with her friends, and plays on her own.  She really enjoys Peppa Pig and Sophia the First and Frozen.  Meagan sings.  She can sing any song on the radio she hears, even if only once.  She sings to her baby sister.  She sings to me.  She sings to anyone who will listen as I push her through the grocery store.  Meagan has an amazing memory.  Short term, notsomuch.  But long term - wow...don't say anything around her you don't want coming back to bite you! We always joke with her future teachers that they will have to give her tests 4-5 months after she learns something so she can recall the information.  It's ok - you can laugh.  We have a lot of laughter around here - it's important.

 I could go on, but, I think you get my point - you see, you were wrong.  Amazing, I know....but it seems you don't know it all.  I couldn't even tell you what my typical kids would do or not do when they were born so I was a little worried you seemed so sure - to embody some superpower that no other human I know has - the power to tell the future.  But luckily, I have come to know that no - you are just a regular person like the rest of us, and just as bad at predicting the future as anyone else.

Now for the blunt part - and I want you to read this very carefully because this is the most important paragraph I am going to write to you.  This is the most important thing I have been waiting to say to you, and will ever say to you regarding Meagan.  Even if Meagan did NONE of those things I listed above - you would still be wrong.  Because you see, my children aren't my children because of things they can do - they are simply my children because they are.  Notice the reason there at the end of that sentence? Right - there is NO reason or qualifier or checklist that makes my children mine....other than they just are.  Even if Meagan never did ANYTHING, even if God forbid something happened where she lost some of her progressions or development...... I would still love her, I would still be proud of her, and I would still be incredibly grateful, joyful and thankful that she was mine.  Because you see, what you don't know is that none of that changes the fact that she is our daughter and we love her. From the moment she was conceived, she was ours.......and she was a beautiful soul.  

I truly hope this letter finds you well.  I wish you long years of happiness and health and joy.  But please don't look for all of that in the wrong places.  Sometimes the greatest gifts we have in life come from the greatest challenges. It's ok to outline the challenges - I get it.  Liability.  Scared parents.  Your job on the line. And little interaction with the special needs community outside of your ultrasound machine.  But try to not forget you are actually that baby's doctor.... and your job is first to "do no harm."  Help parents to understand the problem - all outcomes across the spectrum.  Direct them to support groups, medical doctors who can further explain the condition, and help them to reach out to other parents who have children with the same situation so they can find strength.  Encourage them to come back to you and visit so you can see how amazing their child is - and so you can also stay balanced and truly see these children for who they are - beautiful souls with value - not a diagnosis out of a medical text book you haven't looked at in years. Remember, even our children born "perfectly typical" can quickly change in the blink of an eye. (Speaking of typical, our older four daughters are doing just fine.  They have a level of compassion and love you would rarely find in children of their ages.  And two of them want to go in to medicine because of Meagan.  We even added to our family and gave Meagan a baby sister who will grow with an equal amount of compassion and love... I call that a win win!)

One day, we do want to bring Meagan back to see you.  We want you to see her sweet hazel eyes, her rosy cheeks, her teeny tiny little legs, her pretty brown hair, and her contagious smile and sense of humor that will be sure to brighten your day.   I hope that then, you will finally know and feel what we have always known -  she is not a label or a list of can'ts.....but a little spitfire...a small piece of heaven God allowed us to have here on earth for however long that is.... she is just our daughter - and we love her.  Unconditionally.  Forever.

God bless,
Molly and family

Friday, May 20, 2016

Problem Solved

Before I get into details, I want to say that this blog post is being written from my living room - yep, my nice comfy home sweet home living room (yay!). We got home late last night and frankly, we all passed out before I could update anything so here we go.

Meagan's new blood work yesterday morning was ok...but not 'great.'  Her white counts and CRP fell again (which is good), but not by as much as Dr. Shore (infectious disease) would have liked.  In addition, her sed rate (another inflammation marker) jumped by 20 points.  Dr. Shore was glad things were creeping down, but with the other number jumping up, and Meagan STILL holding fever, he was not comfortable discharging her without more aggressive treatment plan.  A big goal is to not go back to the hospital.... as much as we love our specialists and nurses, we don't want to be there to see them .  (They know exactly what I mean when I say this), so when Dr. Shore explained his plan I was completely on board. We did not want to rebound at home and return with another infection or worse. 

Dr. Shore ordered IV steroids that Meagan would get through the day, and then he ordered a completely different antibiotic.  He said hitting her hard with the Vanc was protocol - you don't wait around to see if a brain patient's brain is infected - you treat it.  But he said now that her CSF was clear for the 72 hours,  his discovery of what was going on, and with her inflammation numbers and fever, he wanted to add a more targeted antibiotic in addition to the steroid.  He said typically if he hits it with this combination, especially at this point in the game, he sees fairly quick results or reactions from the body. Dr. Shore said he would recheck her in the evening, and if his suspicions were correct and she did respond quickly, we were on a promising path and he would talk going home to continue recovery.

Cara was over it too...and ready to get home!

The IV meds were started and so we waited.  The steroid of course made her crazy.  It was good to see energy, but, it was "false" energy.  She was a handful to watch on the steroids because of course she felt she could do things that she could not - she was just completely restless.  I held her a bit in my lap to try and contain it all, and then at one point she looked at me and said "put me in my bed."  So I did, and she fell right asleep.

Cara helping Megs through her meds...her IV was so sore.

As the day went on, she rested and her fever started to come down.  By early afternoon we were finally at 100.  It was a great sign.  After her last dose of antibiotic, she asked to sit in the "blue chair."  The blue chair is the chair that is in every room - Meagan knows this chair because typically, as she starts to feel better during stays, it's her next step to going home - to sit in the "blue chair."  Naturally, I agreed and put her in the blue chair.  She just chilled.  She looked outside and was talking about the clouds and trees she saw. It was nice to see her just be relaxed and enjoy all the activity going on outside her window.

Meanwhile, in the midst of all this, Dr. Reisner and Blaire came by to check on Megs.  She was due to have her stitches out anyway the previous day from her surgery, so they decided to just do it then.  One problem was that Meagan had major 'hospital head,' as we call it.  The whole back of her hair was literally a huge knotted ball.  Blaire asked us to wash it and try to comb it out so they could get to her stitches and then they would return to remove them.  When I looked at the back of Meagan's head, I knew no amount of conditioner was going to help it.  I asked the nurse to discreetly give me a pair of scissors because that was the only way we were reaching the stitches.  We bathed Meagan in her bed, and I put a ton of conditioner on her hair.  I then cut through the middle of the knot and started to comb.  I took each half of the knot, slowly worked the tangles out, and finally we had clean combed hair and an easy path to her stitches.  Blaire returned with Dr. Reisner later that day and removed the stitches.  Dr. Reisner also told me he had consulted with Dr. Shore and agreed with his conclusions and plan, so that made me feel better as well.  We said our goodbyes and I told them hopefully we don't see them for a year....and of course we sent Dr. Reisner off with a Hershey bar.  Can't break tradition.  (If you are unfamiliar with why Hershey bars are a "thing" between us, read HERE).

Later that afternoon, Dr. Shore came back to check on us and Meagan was smiling.  Although still very pale, she wasn't as "grey" as she had been, and he felt a lot more comfortable about our plan to go home.  He said he couldn't let her go without a heavy course of steroids and antibiotics to continue at home, and of course we were ok with that.  He also said that in Meagan's case, she harbored so much bacteria there that once she is all better, we need to consult with ENT and schedule to have Meagan's tonsils removed.  Dr. Shore said that there was no way to know for sure, but between the intubation for the surgery irritating her throat, and it being a perfect opportunity for germs to enter, she had a lot going on that all came together perfectly to create this whole mess this week.   I thanked him for all his help and excellent investigative work. I told him I liked that he was a problem solver.  He acknowledged that without his consult from Dr. Reisner, we could have been there for weeks more and still been searching for the cause.  Without the correct course of steroids and targeted medicines, it would have been a circus and probably a lot longer hospital stay....not to mention, a much sicker Meagan.  He gave me his information so we have access to him for future consults if Meagan is ever down again and it's not the shunt - especially if it happens out of town.  I was very thankful to have that - another phone number for peace of mind and another amazing specialist on Meagan's team.

Once we got home, Meagan was beyond excited to see her sisters and Bentley.  She did try to walk a little but it was virtually impossible.  She couldn't hold herself up at all and fell hard.  She wanted so badly to be with her sisters though, so for the rest of the time she was awake, she scooted around the floor.  She's also a problem solver.  I like that. The meds - I don't like them too much. :)  Of course I like they are making her better.  But Meagan on steroids is no fun.  She is hyper beyond belief one second, and in complete tears the next.  She is emotional and laughing and crying and nutty.  It's funny and tiring and annoying all in the same moment. I just keep telling myself it's helping her - and maybe she's helping prepare me for a houseful of 6 teenage daughters.  Ha.

Sometimes problems with Meagan are clear cut.  And often times they are not.  If you have followed the blog from her birth or before, you know that many times we have had to go with the 'non answer' answer.  So any time we actually get a firm answer on things, it is a breath of fresh air.  Even Meagan's nurses rejoiced when Dr. Shore got to the root of the problem.  They have been there through it all and have seen all too often Meagan and her doctors struggle with answers when things don't make sense.

We see Dr. Shore again next week and then will move on to ENT to schedule her surgery.  It stinks she needs another surgery, but comparatively, this one should be pretty "easy." And it helps solve another problem that could really affect Meagan negatively down the road if we don't do it.  So we are happy for preventative care as well - problems solved before they start are always ok by us!

Thanks to everyone for all the thoughts, prayers, meals, help, and kind words.  Weeks like this can be very hard on the family, namely the other girls, and every little token of kindness was felt and appreciated.

Thursday, May 19, 2016

To The Moon And Back

Meagan had a fairly uneventful night last night.  She crashed fairly early and slept well.  Her fever still hovered in the 103 range and she was still very tired.  Around 4am she woke up, and was just "up."  I think she had fallen asleep so early she just couldn't go back anymore with waking up so early.  I snuggled her for a bit and then labs came to draw blood.  The results came back promising - Meagan's CRP had fallen again - her white count had gone up a little, but with the falling CRP Dr. R was happy we could be headed in the right direction. 
Still, the fevers were puzzling so far into the process and both of us were worried we were missing something.  Dr. R decided to call in a colleague - an Infectious Disease doctor - to look Meagan over and make sure nothing else had manifested. 
The ID doctor was very nice - he talked with me about Meagan's history, the reasons she had been admitted this time, and what we had done so far.  He had a suspicion and asked if I could help him hold Meagan so he could get a good look.  She wasn't happy about it, but I knew it was for a good reason.  Upon his exam he found that way deep down, Meagan was harboring puss in her throat and that the insides looked pretty horrible. It was crazy because on Sunday, her throat was completely clear - but these things can be brewing and that's probably what was happening in her case.   He said that the infected throat could easily give Meagan the fevers and lethargy she had been experiencing - not to mention a few days before we came to the hospital she had lost her voice.  He also said her loss of appetite and fluctuating white counts make sense as her body tries to fight off the germs. 
Meagan also had been holding the back of her neck more frequently as if it's bothering her - this is the one symptom I'm unsure of - sure, it could have had to do with her throat and referred pain, but after reviewing some of Meagan's latest scans it could also have to do with her Chiari Malformation, especially considering her balance lately and not wanting to sit up as much.  Laying down for her is more comfortable and that's typically a red flag with Megs.  We will see with time - if the behavior stops, then we know it was acute.  If it doesn't, then we will have lots more questions for Dr. R about what this means for Meagan since she would be showing symptoms again.  But for now, we are focused on getting her better from this illness before looking in to what may be lurking again in her brain.
Overall Meagan also had a much better day.  The positives were she was talking, and interacting again with people.  Child Life brought her something to color and we helped her color a page or two.  She had a few of her teachers stop in to wish her well and bring her some love, and her favorite nurse was here again and able to bring some smiles out of Megs.  Probably one of the funniest things ever was when Nurse P was asking Meagan how she had been..  She asked Meagan about walking and her sisters and Bentley and said she looked like she had a very busy and fun year. Nurse P then asked "soooo, what have you been up to?"  Meagan thought for a moment and then said "well my cat is in heaven."  Ha. Really? After a whole year and a half that is the one thing she chose to tell Nurse P.  It gave us all a good laugh and a good hunch that hopefully our Megs was waking up on the inside and starting to win the fight.
As afternoon rolled around, Dr. R rounded again and we talked with the ID doctor.  The ID doctor was not comfortable letting Meagan go home today because she was still harboring high fever, and her labs while promising, hadn't exactly fallen as we had hoped.  Knowing about her infected throat, he also was wary of sending her home with fever in case an abscess was forming - something that if it happened, would bring us right back to CHOA in another serious situation.  So as a team, we decided to wait out her fevers tonight.  We agreed to continue to monitor her and do another round of labs in the morning.  If her blood counts were much much lower and her fevers subsided, we would assume we got it all with her four days of rotating medications and feel good talking about going home.  If her new labs are not lower, or her fevers persisted, then he said he would want to try to give her a boost with a targeted steroid to help her body finish off the infected throat.  At a very last resort, he said he could do a focused CT scan of Meagan's neck to for sure rule out any abscess, however, since she has already had countless CT's and x-rays, and since we haven't seen her new blood counts yet, the scan probably will not happen. 
As the evening went on, Meagan became very tired again.  I would be too with such a long week of fever and pain.  She went back to sleep fairly well tonight -  She was still uncomfortable but sleeping.  I got Cara ready for bed and cleaned up our room a little bit.  Then I went to say goodnight to Meagan - before I even touched her I could see her hair was sweaty.  Could this possibly be the start of her fever breaking? I sure do hope so. But I won't *really* say it out loud just in case....

I was really starting to worry about Meagan this week.  She just didn't look right and we didn't have *the* answer .... she looked grey and pale and wouldn't stir for so long.  I'm so glad that today we have seen her personality start to come through and hopefully we can get some color back in her tomorrow.  We should have labs drawn fairly early so we are hoping for a much more drastic drop in numbers to reassure us that we did in fact get everything and no bugs are lingering in her system.  As for the remainder of the throat, that will heal over time and hopefully she got enough antibiotics in her system to cover her fully and ward off any lingering infection.

Weeks like this can get very crazy for our household - we have school, dance, work, everyday chores, financial obligations, Bentley, and the list goes on.  It gets a little tough to "divde and conquer" with Brian to make sure all our bases are covered, but we just do.  I haven't seen my girls since Sunday morning (barring a quick visit to Reilly for her school awards on Monday morning), I haven't been home to keep Bentley in his routine, and I haven't been home to have down time with Brian and discuss our days, plans, and thoughts. Knowing all this, however - the time away, the expense, the hospital annoyances, the pain Meagan and all of us endure - would never change my choice to do it all over again.  When you say you love someone to the moon and back, you mean it - and that means that sometimes you have to feel like you actually travel to the moon and back to show that love.  This is just one of those journeys  and right now I feel like maybe we are almost on the home stretch from it all...this time..  Laying here with Meagan I am happy and peaceful.  It isn't a chore - it's a gift.  And I will cherish that gift to the moon and back.....and back again....and back again.....and......

Love you Meggy and we are hoping for some awesome numbers in the morning.  <3

Tuesday, May 17, 2016


Meagan slept last night for a few good stretches.  She got a pre-op wipe down (just in case), and another dose of her heavy antibiotic.  Unfortunately, her IV also went bad - it never looked great from the ER anyway to be honest so I wasn't surprised.  Luckily, one of our favorite people to redo IV's was here.  Ms. C, as we will call her, was excellent as usual, and got another IV in Meagan's hand with minimal fuss and pain.  She was able to take the old one out and let her arm rest.  We saw glimpses of Meagan's stubborn self when she was getting her new IV - telling Ms. C she needed to put a band aid on it, she was getting a 'boo boo,' and then finally telling her and our nurse that they could go home.  Oy.  Needless to say, despite her being bossy, all of us were happy to hear it because that is more like the Meagan we know - so I thank them for taking Meagan's "insults" with grace and indulging in some humor about the whole thing.  Any glimpse of Meagan's personality is a good thing!

So first for the good news - her CSF cultures are still negative, and we are past the 24 hour mark.  Now I don't want to jinx anything by saying this, but, I would honestly be shocked if we saw any bacterial growth at this point.  Yes it can happen up to 48 and even 72 hours, but, I feel pretty comfortable saying that her CSF, thankfully, is not what is holding the bacteria.  That would have meant removing her entire shunt, waiting for infection to clear, and redoing the shunt.  So, I am VERY happy her CSF is still showing no growth.  The other good news is that although she's unhappy at times or has, um, 'attitude' (the nicest way to write it), we are happy to see that.  She has been really lethargic since Saturday, so to see that is a good thing.  She will stay awake for a little bit and watch Disney Junior, or will talk to me for a few seconds..etc.  She is still feverish and still wants to sleep a lot, but these awake times are a good thing.  AND the last good thing today - we got a smile out of Meagan.  It wasn't any grand effort - her nurse simply walked in and Meagan smiled.  We love love love her nurse today - well, we love a lot of nurses on first floor - but Nurse P was with us through almost all of Meagan's very difficult lengthy stays 2 and 3 years ago, so to see her walk in made Meagan smile.  I love that Meagan reacted this way - with everything going on, it's nice to see she actually has joy at who is coming to care for her.

Now for the "eh" news - I won't say bad because I do believe with Meagan's personality improvements we have to be moving in the right direction.  But, it's still "eh" mostly because of the unknown.  So if there is no bacteria in her CSF, the logical question is...where is it? Well the most honest answer is - who knows.  What we do know is that her white blood count and CRP were very high, she keeps rebounding with a high fever, and she's still (more than normal) sleepy/weak.  So there is obviously infection happening somewhere - as I said previously they have been hitting her hard with two antibiotics that really should cover us with any infectious situation. 

So the plan from here is - continue to watch Meagan's CSF (to ensure no new bacterial growth), look at Meagan's blood cultures as well (to also make sure no bacterial growth), and if those stay clean, hopefully her blood work from today shows her white counts and crp levels have dropped.  Although not an exact "you have *this* type of infection" answer, what that will tell us is that the meds ARE working and we keep on keeping on until she's back to baseline and infections are gone. 

That's basically where we are now.  Dr. R and Blaire said they could get Infectious Disease involved, but, until we see her numbers there is no point because it will just make it a lot more difficult (and probably painful) for Meagan.... so as long as her numbers come back trending the right way, we can chill with neurosurgery and keep killing off whatever is bugging our girl.

It's all about the numbers today! So let's hope we see them going the direction we want! We will keep everyone posted of course and hopefully have some of those answers for you tomorrow.  Thanks again for all the prayers and well wishes!

Monday, May 16, 2016

The Perfect Storm

Since Meagan's surgery 11 days ago, she has been doing well. She was back to her normal "go get em" self, and even gave herself a black eye trying to walk around her second day home. She went back to school last week (which she loves) and seemed to be doing well. In hindsight I should have known *something* was up because throughout the week she wasn't eating as she normally does. But, she had also been through her first surgery in a year and I attributed it to recovery. By the end of the week, Meagan's mood was turning slightly whiny, but again, i attributed it to recovery. Saturday was a crazy day - I taught dance lessons all morning, went home to shower and get my music and flute and then went on to my symphony rehearsal and performance. I didn't see Megs (or any of the kids) much that day, and Brian had mentioned that Meagan had been "eh." When he says that I know something is up because typically she's not just "eh," especially on a day with daddy.

Today we woke up like any other day. The girls had Irish dance workshops all day long and we had planned for us to split the driving duties so by the day's end, we were all together at dance and then would go to evening Mass together. Needless to say that did not happen. 

Meagan was rather lethargic all day. She was still talkative but didn't want to move from Brian's chair. Remember, this is the kid who wanted to walk so badly after surgery, that she did so, and gave herself a black eye for trying. So something wasn't right. As the day went on she just looked "grey."  That's the best way I can describe it. Then the heat. I could feel the heat a few inches away from her. I got the thermometer and Yep. 104 temp. 

Now you may say "kids get sick" etc. Well yea. They do. And even kids like Megs get "normal" kid stuff. But my mama gut red flags were just screaming at me. We were 10 days post op. And suddenly my kid was laying across the chair. Grey. Lethargic. And high temp. In these situations you are literally praying for some other symptom to show. A stuffy nose. Cough. Anything to be just a "normal" kid thing. But as the hours went on, I could tell she was not well. After discussing my concerns with the Pediatrician, we both decided Meagan needed to go in. 

We arrived at CHOA in the evening. Because of her symptoms they were very quick at getting us back to a room. The plan was to run a viral panel and blood work. One or the other was going to give us a direction. I was hoping for a virus. Again, one of those weird prayers you pray as a hydro parent when your kid is down. 

After a few hours we did get some results. Her blood work came back showing her white counts (infection markers) over 25,000. Her CRP (inflammation markers) was 9.5. Crap. Sorry but that's the first word that came to mind. Neurosurgery was paged. One of Dr. R's  colleagues came in and did a shunt tap. He couldn't pull much fluid from her shunt, but was able to get enough for a culture. The first cultures should be ready in the morning. If her CSF shows growth then unfortunately it means back to the OR to externalize Meagans shunt.  If the CSF doesn't show any growth, we treat her anyway and recheck the 24 hour cultures. Infection in spinal fluid is not anything you mess around with. Luckily Dr. R's colleague agreed and wasn't going to wait for cultures to start hitting hard with meds. Unfortunately Meagan reacts to the ideal medicine to treat such infections, but with close monitoring and allergy meds she made it through most of the dose. After that, they started her immediately on another medicine to help her body keep fighting the infection while we await the cultures. 

People have said its the perfect storm - the timing post op, the blood counts, the fever - for a raging infection to be showing itself. Unfortunately my gut feeling shares that sentiment. However, this isn't Meagan's first storm. So I have faith that with more answers tomorrow and continuing aggressive treatment by her doctors we will hopefully have caught this early and see her turn around. The funny thing about storms is that they do end and the sun always comes out. But in this case, I'm lucky to have light through the storm - and that's Meagan. She is sunshine to everyone that knows her and loves her and we can't wait to see her sweet self feeling better soon! 

We will keep everyone posted as we know updates. 

Sunday, March 6, 2016

Stepping Stones

Wow. It's amazig how fast life can go when you blink! I have been fairly good about keeping up the blog and now realize it has been a few months already! Lots has been going on in the Gareau family during those months. We have had ups and downs.  I will do a quick recap and get you up to speed with what has been going on, and especially what Meagan has been doing. She surprised a lot of us this winter and I can't wait for everyone to see her progress.

I came across an opportunity late Fall to bring another dog into the family.  Being that we really missed that "big dog" presence in the house, we wanted a dog sooner than later to be already used to our family by the time the new baby would walk, and the puppies were what we were looking for, we decided to go ahead and commit to taking one of them for our newest family member. We didn't tell the girls, but instead told them we were going to the small petting zoo farm we have visited before. When we got to the farm where we were picking up our new puppy, the kids were absolutely shocked. So much so their reaction was quiet and in disbelief! They thought Brian was just getting a puppy for them to pet so when we told them he was ours to bring home, they were elated. The girls chose to name him Bentley and so he has taken his place in our family quite well. He has big shoes to fill - Dudley was such an integral part of our life. But we have no doubt Bentley will make his own path in the family and be a joy to all of us, especially Meagan.

Prior to Christmas, Meagan's four older sisters competed in the Irish Dance Regionals (Oireachtas) again this year.  They did both team and solo dances and everyone did a wonderful job! Reilly placed 18th and qualified to compete at Nationals.  Kaitlin placed top 10! She also qualified to go to Nationals.  Anna danced her first solos and made it through with two clean performances.  And all three girls along with Maura competed in team competitions where they did a very good job and will also be going to Nationals for teams.  I'm so proud of them, especially since they had to go with Brian on their own since I was so close to my due date.  They traveled on a plane for the first time, had a total blast, danced really well, and enjoyed a wonderful weekend with Brian, my mom (who flew in to help), and all of our Irish dance friends.   




Christmas was great - although I was very very pregnant and had on again off again labor, we had a great time with our family.  Meagan enjoyed opening gifts.  For the first time she was aware at least of the excitement and the "buzz" going on around her and really got involved.  It was so fun to watch her discovering all the new excitements of the season and watch her taking it all in.  She gave us a little surprise as well over the break - for the first time, Meagan started taking independent steps.  One day, she just tried to make it between our couch and Brian's chair... and she was able to do a few steps and then throw herself into the side of the chair.  It was amazing! This trend continued over the break and into January and by mid January, Meagan was moving around our living room or her classroom independent of her walker.  She is really enjoying her newfound independence.  It presents a few new challenges now as she doesn't have great balance, so we are more concerned with falls on the front part of her head (where she is missing skull).  We also have to now deal with a more intangible challenge - her desire to walk even when she cannot or when she tires out.  We love to let her try and walk whenever she can, but, sometimes she tires out and falls a lot, or simply wears out and can't.  And other times there are too many people, changes in the ground where we are, or too many crowds for her to safely or successfully walk.  So we have had to find new ways to deal with her stubbornness .... we absolutely love the drive it's giving her, but at times it can be extremely difficult to help her understand when she does need to rest and use her wheelchair or let us help her. 

Unfortunately, we also had a sad occurrence over Christmas break.  Our beloved adopted cat, Francis, passed away suddenly.  He stopped eating one day and went downhill fast.  I took him to the vet where they tested him for several things.  His white count ended up over 90,000 and his marrow was barely making any more platelets.  It was awful.  I syringe fed him for a week to see if he would turn around, but, he unfortunately started to get fluid in his lungs and so we had to take him to be put to sleep.  He was so young to go and was such a wonderful "bridge" when we lost Dudley.  He helped us get through his loss and we were looking forward to many more years with Francis and Bentley.  But unfortunately, it wasn't meant to be.  It's so amazing how he came in to our lives and just seemed like the perfect fit.  Perhaps that was his purpose... to come to us, help us through Dudley's loss, and then be on his way.  Either way, he was a very much loved member of our family and we will greatly miss our one eared cat. 


In early January, things turned positive once more with the birth of our 6th daughter, Cara Maeve.  She came on her own, on her due date.  The whole day was wonderful.  Meagan wasn't too keen on her little sister at first - she doesn't' like toys that move, and in the beginning, Cara was just like a baby doll that moved so she wanted nothing to do with her! Over time, I started easing her in to being a big sister.  I would leave a diaper on the floor and ask Meagan to hand it to me, or ask her to come a little closer for a picture for Pop Pop, and eventually when Cara was a few weeks old, Meagan was fully in to the role of big sister. 

Cara has been a very happy laid back baby - I suppose she realizes she's #6, so she may as well take it easy and go with the flow.  It's been so fun to see Meagan in the role of big sister - she tells everyone "that's my little sister," and gives her hugs and kisses. We had her baptized at our alma mater when she was two weeks old - it was an incredibly special weekend to see her being baptized in the church where Brian and I first started going to Mass together as college students.  Just recently, Cara has started to smile and Meagan loves to touch her cheeks and watch her react with smiles and coos. 


The biggest "milestone" over the last several months has been celebrating a very special anniversary.  As of the third week in February, Meagan was able to officially celebrate a WHOLE YEAR with no surgeries, hospital stays, or emergencies.  I can't even believe I am saying that because being at children's hospital was basically part of our "normal."  That has changed a bit, and while we absolutely ADORE Meagan's doctors and the neuro floor nurses, we are happy to say that part of our "normal" has changed for the better.  It's amazing what can happen when she stops getting interrupted and is allowed to just be Meagan and learn and grow.  We know due to her diagnoses and complex shunt system this won't be a forever thing, but, we will take every day past a year we can get.  We are so happy Meagan has been afforded a year to just be Meagan. 


Finally, the newest development has been with Bentley and Meagan.  We had considered getting Meagan a service dog, but the schedule wasn't a good match with our family.  So we got Bentley on our own.  Someone asked me if we were going to just have him trained for Meagan.  I had no clue that existing pets could be trained, so I started to ask around.  I called the Children's Hospital Pet Therapy contact to ask if they knew of any local trainers that would work with and existing pet.  They were able to give me several referrals.  I talked to three of them, and finally we decided to have Bentley evaluated at Comprehensive Pet Therapy.  In order to move forward with service training, the owner said Bentley would have to pass a temperament evaluation.  This is because to even embark on the service training journey, the dog (no matter the breed) needs to meet certain personality and trainability requirements. 

I took Bentley to the training center on a Tuesday night.  We met with the head trainer/owner who did the evaluation.  It was very interesting to watch - he did many tasks with Bentley, a few of which were testing friendliness, how he reacted to different positions and temptations, and how he reacted to different intense stimulations (like loud noises or things thrown in his direction..etc.).  After two and a half hours of evaluation, we found out that Bentley passed! The trainer we were working with was a former neuroscience researcher, so when we designed the program for Bentley and Meagan, it was definitely one of those "meant to be" moments.  It was very easy to make goal behaviors for Bentley because the trainer understood many of the intangible needs Meagan has. 


All that said, service training is extremely expensive.  Bentley will be away three separate times for about 30 days each living with a trainer and learning what he needs to learn.  In between these board training stays, he will come back home and live with us at which time a trainer will come intermittently and work with us and make sure Bentley is continuing what he is supposed to be doing back in the home.  We started a fundraiser last week to raise funds for tuition to cover two of his three board training sessions - we will also be saving on the side for the third board train.  Needless to say, we are completely overwhelmed with how the fundraiser has gone thus far.  Since we have reached the first board train tuition, we are now able to talk with the trainer tomorrow about Bentley's file and set up the official date he will go for his first board train.  In the meantime, we will keep the fundraiser open to try and work our way up to his second board train amount so we can keep Bentley on a good schedule that will be best for what his behavior goals are.  We cannot say enough how much heartfelt appreciation we have to all our family and friends rallying around Meagan to reach this goal. 

Overall, the last few months have definitely been a line of stepping stones.  Some have been up, and some have been down...but that's how steps go anyway, right? One foot is always in the front, and one in the back as we move.  What matters in life is which foot we pay attention to - the one in the back, or the one up front pushing us to the next point in our life.  If we focus on the back foot, we will never see the potential...however if we ignore the back foot, we lose our momentum that pushes us forward.  Stepping stones are definitely a balance and the last few months have certainly unfolded in that sense.  We are so excited for the continuation of Meagan's journey and what it will bring.  Adding in Bentley's training makes me hopeful Meagan can enjoy more and more stepping stones on her own as she grows.

The link for Meagan's fundraiser is HERE (Help Meagan Get Bentley Service Trained).  We appreciate any donation whether it be monetary, sharing her link, spreading the word, or keeping all of us in your prayers.  I will be updating the fundraising site with facts about Bentley's training, and as he starts, what he is learning.  We look forward to what this new relationship can mean for Meagan's independence, and therefore her ability to do more with her sisters and the family.