No more silver linings…

I don’t even know where to start.  Yesterday, Scott and I had our hearts broken all over again.  Just like the day we found out that Owen had a stroke, only worse – so much worse.  This time it wasn’t a week-old baby that we loved because he grew inside me, a love that comes from hormones, and instinct.  This love we have for him now comes from really knowing him.  His quirks, his silly mischievous ways, hearing him say “wuv oo mommy” multiple times every day, hugging and kissing him, burying my face in his hair to smell his sweaty little boy smell, sitting with him in his chair each night before bed and rocking with him while singing our special song, watching him absolutely beam while holding his big sister’s hand, watching his awe of planes, his love of busses, and anything else that has wheels, seeing him work tirelessly in therapy four times a week without protest, or whining, or stopping because it’s too hard… I know him now. I don’t only love him because of what he is – I love him because of who he is.

Yesterday, we went to Yale for the follow-up to the specialized MRI that Owen had.  It turns out that Owen was literally the first one to have this test performed, which made us feel incredibly lucky.  It was going to give us so much more information about his stroke and what it had affected, so that his treatments could hopefully become more specialized, and therefore more successful.  We got so much more than we bargained for.
These were some of the smartest people we have ever met.  It was the head of Pediatric Neurology at Yale, along with the head of the MR Imaging department, the Head of Neuroradiology, and a specialist in reading this new form or MRI, where they are literally able to follow the “threads” of his brain that carry messages to each part of the brain (this is beyond layman’s terms, obviously).
Left & Right brain imaging
This picture is of the left and right sides of Owen’s brain, with the red and yellow “threads” showing the pathways he currently has.  The left side is where the stroke was, and it would have been expected that it would not have looked as good.  What wasn’t expected was how badly it looked, and how equally badly the right side (supposedly the unaffected side) looked.  Those threads are supposed to be much more compact in their pattern – almost as though someone was drawing over the same line again and again – these just go all over the place.  Point A isn’t going to Point B – it’s going to Point G or Point R or never getting to it’s destination at all.  Additionally, the left side of each photo is the front of his brain – all of those threads are supposed to continue to the very front, connecting the language portion of his brain to the motor portion.  Not a single thread makes it even halfway.  The right side of the brain should have taken over for the damage on the left side of the brain caused by the stroke.  Instead, it looks just as bad.  Additionally, the right and left sides should be communicating with each other, and are not.
That wasn’t even the worst of it.
Functional Imaging MRI
In the image above, the top line shows an amalgamation of functional imaging MRIs from 85 people and the bottom row shows Owen’s.  The yellow circles in the 3rd, 4th and 5th images show the area of great concern to the doctors.  If you look at Owen’s, those areas are completely blue (showing no activity at all) whereas on the images directly above show as orange and yellow, with a great deal of activity.  Images on MRIs are flipped, so these are actually showing a lack of activity in the right side of his brain – the alleged, supposed healthy and unaffected side of his brain.
These men and women, at the top of their fields in arguably one of the top University regional health centers in the country, let alone the world, are completely stunned.  They have no idea what happened or how.  They don’t know what to diagnose, can’t tell us a prognosis, and have no explanation as to how or when or why his brain looks the way it does.  The head of MR Imaging has seen tens of thousands of MRIs and said that Owen’s stroke was one of the smallest he has seen, and would definitely not explain the deficits in language that they are seeing, nor the damage shown on these images.  They don’t know what this newfound brain injury was caused by, so new testing and new therapies need to be put in place.  They are testing him for a possible genetic language disorder, and we have spoken about a cutting-edge therapy involving magnetic rays in Calgary, as there is nothing appropriate in the United States currently to treat or diagnose whatever it is that Owen has.
His neurologist, who admittedly holds a special place in her heart for our boy, used to tell us that she would see us at his college graduation.  Yesterday she told us that she didn’t know if his speech would go beyond that of a five year-old, or if he would be able to go to a school for typical children.  All of the dreams I had for him, had let myself finally hope for him, were shattered in that room.  In those 45 minutes, I felt everything we thought we had worked for  – that HE had worked so, so hard for, harder than any little boy should have to work – just slip away.
I have no idea how I didn’t just burst into tears or crawl under the table, or run out of the room screaming my head off.  I was numb.  I was in “CMO – Chief Medical Officer” mode.  I kept myself together so I could ask the pertinent questions and get the answers and information we would need to start to move forward and start from scratch (again).  I waited until we got to the waiting room afterward before I dissolved into sobs and wiped my face with that horrible thin, scratchy hospital toilet paper.
I have been emotionally “on guard” ever since I was punched in the gut the day they told us he had a stroke.  I told myself that I would never let myself get hurt that way again, that I would be prepared.  I didn’t see this coming.  I had let my guard down, blinded by the idea that only good could come of this new information on how to better treat him.  I didn’t think that another devastating diagnosis – or non-diagnosis, would come.  I cannot believe it happened again.
Last night as I rocked Owen to sleep  before bed as I always do, I started to cry as I thought about how to tell this little man the his future was uncertain, that all of his hard work might never amount to anything more than the vocabulary of a Kindergartner.  Old wounds and worries about whether or not he would ever grow to have friends, fall in love, get married and start a family, reemerged.  I cried for our family, for his future, for everything we thought we had overcome, not knowing that it was just the beginning…
I didn’t want him to sense that I was upset, so I took a deep breath and tried to calm down and stop sobbing.  We alway recline chest-to-chest in his glider, and I immediately felt him take a deep breath too.  I wasn’t sure if it was a coincidence, so I did it again, and then so did he.  After the third time we both sighed, with his head on my shoulder I felt him smile – the wide grin that makes his cheeks puff out.  That’s my boy – my little man – teaching me something once again, making me smile through the darkness.  Only from him could I feel a smile.
Only he could smile on a day like that.

Comments

  1. Sandy says

    You, the family and Owen are in my thoughts and prayers. Don’t give up & never stop believing in miracles. Children surprise is every day… Maybe one day he will surprise you too!! Be positive….

  2. Jackie says

    Oh Jamie..I am so, so sorry! We haven’t spoken in awhile and this is the first I am hearing of basically everything. I am sending major love and prayers to you and your family. Keep your chin up. I have seen you be strong during some really horrible moments and i know you will be just as strong through this as well. My thoughts are with you sweetie. HUGS and love! – Jackie

  3. Mariella says

    Hey Ms. Krug,

    I love your blog, I am truly sorry for what you have been going through with your baby boy, no matter what happens with his future, the good part is you can’t ever say you did not try, you DID TRY. It is what counts the most, he’s such a lucky child for having you guys as parents to lead him through and be there for him…which explains the reason why he sighs and smile, because he knows, there’s nothing more admirable then the love your little family has. I remember my niece, when we found out she had trisomy 18 and a heart problem, which caused her death, we tried, we were always there for her, we never gave up on her, but even on her bad days, where she would not breath and scare us to death, she always managed to smile right after. It’s crazy what they can teach us. But when she left, we couldn’t have been more satisfied of the love we had given her. I sincerely hope that they figure out a way to help that cutie of yours, you guys are so strong, and so is he, it is not easy at all, but *sigh* 🙂 Owen thinks it would be alright. With love….an old student…Mariella Hernandez from I.s. 195

  4. phylli says

    I am so sorry to hear this news – it is heartbreaking. My prayers are with you and as you always have, pick yourself up and forge on with all your might and hope that as they have a new test to diagnosis the problem, they will hopefully find a treatment. xox ph

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