Face of hope

Face of hope
Courtesy: TIffany Kay Photography

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......