Sunday, January 24, 2016

The new year

“The smell of hospitals in winter, and the feeling that it’s all a lot of oysters, but no pearls.” – Adam Duritz, A Long December

 

Silly me.  I thought I would wish away my unlucky, odd-numbered year and 2016 would be magically better.  I said that I couldn’t be shocked by much anymore, but I was wrong.  I haven’t seen the “old” Avery in 24 days.  The smiling, laughing, chatty, jumping-around Avery has been replaced by a different Avery, but I love her just the same and have been sitting at her bedside in the ICU at Children’s Hospital for those 24 days.  To describe this month to anyone who hasn’t lived it would be impossible.  Though we have seen and been through so much with Avery since her birth, these last 24 days have probably been our most challenging to date.  The fear of the unknown and what the next days, hours, minutes will bring have not left us this entire time.  Wondering when and if we will get to bring our girl home, and if she will ever be the same.  If she’ll continue to live the life she was living, or have even more limitations than she already faced.  Wondering how our day-to-day will change, and if I will live in this constant fear for the rest of my life.  I didn’t think I would ever sit down and blog during this hospital stay, but writing things down has always made me feel better, so while this entry may be TMI to some people, it’s helping me get through this day.

 

Avery has been predisposed to seizures her whole life.  We were warned of them along the way, but like everything we’ve been warned about, we just wish they never happen.  She had one seizure last January, but being that it was coupled with extremely low blood sugar, we resolved it quickly and her follow up tests didn’t show a continued need to worry.  But on January 1st, just as John and I had left to go on a date, we were quickly called back by my dad because Avery had vomited and was seizing.  I was shocked.  We arrived back as she was being put into an ambulance in the driveway at my grandmother’s house in Milford.  She had three more convulsive seizures that evening, and required several doses of strong medications to stop them.  She also needed to be intubated, after her breathing began to suffer.  I kept thinking it was a terrible nightmare that couldn’t possibly be real; and I’ve continued to think that every day since.  The events between January 1st and now have led us to the realization that Avery now suffers from Refractory Status Epilepticus, and so far, non-convulsive (meaning only detectible on EEG) seizures have been her main enemy.  This is a serious, incurable condition, and so very far from the image we had in our minds of what her seizures could ever amount to.  Although the 4 different seizure meds we’ve tried have kept them from becoming convulsive, she was still having 20-30 non-convulsive ones per day, ranging in length of time from seconds to over an hour.  Between the constant seizing and the strong anti-convulsants required to stop them, she has not been herself.  If she’s awake, she’s in a medicine fog, which limits her motor skills, her sight and her ability to speak and hear.  A good day is constituted by her eating, saying a few words, and answering a question.  The doctors went through every imaginable test and possibility for what set off these seizures – why now?  And unfortunately, no clear cause has been determined.  Her atypical brain structure, and her having meningitis (with permanent damage) as a newborn just left her predisposed to them.  They have also tried every possible treatment that Avery qualifies for.  We’ve even discussed surgically removing part of the brain that causes the seizures – a surgery I had only heard about previously, and was terrified of.  But when you’re desperate to bring your child “back,” you’ll be open to anything.  Unfortunately, the surgeons cannot determine a definitive focal point in her brain to remove.  Which brought us to last Monday: the conference.  Fifteen neurologists from the area, plus her team of neurosurgeons, and image specialists met and reviewed Avery’s case.  They reviewed each test result, piece of her history, MRI, PET scan, CT scan and tried to figure out a treatment that could help her. They came away with one good answer, which was the pentobarbital coma.  Sometimes the brain is like a computer – if it’s acting up or stuck or going haywire, you reboot it.  The coma basically puts her brain on pause, and you slowly reboot it and hope that it breaks the pattern of seizures.  The success rate is not great, but at this point was our best option.  However, there are risks.  She would need to be intubated again, since the medicine inhibits the body from carrying out its jobs – most importantly, breathing.  She would need constant, close monitoring.  We had to sign a form that basically stated this was an “elective,” procedure.  I found this pretty funny – they’re telling us this is the only current treatment possibility for her, but that it’s still considered “elective”…did they mean like a face lift?  

 

We trusted the team, and agreed to try it.  The process has been brutal.  Watching a crowd of doctors put your child in a medicine-induced coma is beyond anything I’ve witnessed before.  Her room has been quite busy ever since that morning last Tuesday, and watching our child lay asleep in a bed, with a machine breathing for her, a tube feeding her, and nurses constantly caring for her, gets harder each day.  And now we are in the “wait and see” phase. She’s been in the process of weaning off the pentobarb since Friday morning, but it’s not as fast as we thought.  She’s taken a few breaths on her own today, and tried to cough.  Her EEG has been clear of seizures so far, but we aren’t anywhere near in the clear.  We’ve become obsessed with watching that EEG, and I think we could say that we have minored in Neurology at this point.  Being that no treatment up to this point has been successful, it’s very hard to be hopeful.  I’m just waiting for them to come read a seizure on the EEG history, and break the news to us.  But, we kind of expect at this point that she will never be “seizure-free” again.  Best-case scenario, she is, but next-best-case (and more realistic) is she has less-frequent seizures, and we can take her home on two medicines, and possibly on a ketogenic diet.  Worst case is they come back in full-force, and then I don’t know what will happen.  I really don’t know if our time here is days away, or weeks away, and the pressure is killing me.  

 

I miss Avery so much.  While she is here physically, she has not been “here.”  I miss her constant stream of questions from the back seat of the car, her whining to get more time on the ipad, her turning on and off every light switch she can reach, or hiding in our shower when we aren’t looking.  I miss hugging her without 20,000 wires getting in my way.  I miss the life I thought was so difficult, but seems like a breeze right now.  I also miss Lucy so much.  She’s been traveling around from person to person these last three weeks, and we get to “visit” with her in between.  She’s starting to get used to it, which I find comforting and sad all at once.  I feel like I’ve been robbed of at least three weeks that I’ll never get back with my girls.

 

I know once we do leave here, that my perspective on life will be so different.  Besides the horrors of our own situation in our own little ICU room, we have witnessed the saddest things I’ve ever witnessed in life, in this unit.  It’s one of the most depressing places to spend time, and lately, just driving into the parking garage here makes me nauseous.  I think we’ll be changed by this forever.  John has, as always, been my steady rock through it all.  I know he’s hurting too, but he always handles the stress so much better than I can.  He keeps me sane by reminding me that we are in it together, and we will come through it together.  While our future might be more difficult, and our new “normal” will be different, we will do it together, as a family.  That is the one thing I can hang onto right now.

 

They say that situations like these will show you who your “real” friends and family are. Again, I say that we must be incredibly lucky, because everyone has been beyond supportive from day one.  I never go a day without feeling the love and support of people in our life.  Both sets of parents have taken the majority of the workload, and we are forever grateful for them, as I know they are suffering each day with worry.  Thank you to everyone for supporting us in so many ways.  All we care about is knowing that you’re behind us, and praying for Avery to get better, and you’ve done so much more than that.  In the past, situations like this have chiseled away at my faith – in God, and in life in general.  I feel like this time, I can get through those dark times more quickly, and my heart hasn’t hardened as it has in the past.  There is always a homeless person standing with a sign at the corner of Mack and Beaubien, just outside the hospital.  In the past, I felt warranted in being cold and ungenerous to that person – after all, they probably put themselves in their bad situation, and my daughter sat in a hospital bed, and was worse off, to no fault of her own.  But this time, I find myself reaching into my wallet, if I have time before the light turns green, and giving them some money.  Because you can let the dark thoughts overtake you and completely harden your heart, or you can give yourself some time to be angry, then decide to move forward.  That is my only option in this, because being constantly angry and depressed does not one thing for Avery.  She deserves better than that, and I am grateful to have learned that this time around.  So while I definitely have my moments, and my bad days, I make the conscious effort to move forward, and only speak positively to her; whether she can hear me or not.

 

Please continue to pray for her – we are far from out of the woods, and we’ll need every positive thought we can get!  Thank you for everything….