The long awaited MRI

Hello everyone!

Well, as the title suggests, Atticus had his MRI today.  And there's a lot to discuss.  I'm going to start with what I do know, and then go to what I don't.  So lets get started.

Because Atticus has HLHS, they decided to make him the first case of the day.  Which was great, and not so great.  That meant we had to check in at 6:30AM, which means I was up at 2:45AM after getting pretty much zero sleep.  But the good side was that he was sleepy all the way there, and while we were waiting, since he couldn't have anything to eat or drink.  It was about 8:00AM before the radiology folk came in to wheel him back.

The MRI took about 1.5-2 hours, everything went well, and Atticus ended up waking up from his sedation around 10:30AM.  Next we went to meet with the neurosurgery department to talk about the sphrinx in his spine.  That was some of the best news of all...

As it turns out, the fluid pocket in his spine (that small black oval that looks like the eye of a needle), is only about 4mm in size.  That means that it technically doesn't classify as a sphrinx (it would have to be 5mm).  The other good news is that the MRI revealed that there are no other common problems that are associated with this sort of thing, no tumors in the spine, no malformations, etc.  He said that its appears to be completely benign.  Which means that we don't have to go back for 3 years!!  Since its been about 3 years since the MRI that discovered the fluid pocket in the first place, he said that we can wait about 3 years until we follow up with another MRI.  Hooray!!  That is all GREAT news!  Thank you, God!

Now, the rest of this post is going to leave more questions than answers at the moment.  Its also going to revisit one of the most difficult times in my life, the second, MASSIVE brain bleed Atticus had when he was about 1.5 months old.  I had always heard our old neurologist, Dr K, talk about the second brain bleed, and really stress about how massive it was, and what a walking miracle Atticus was.  I never really understood why until today.  And its part of why its taken me so long to write this update today.  I had to wrap my head around it.  I'll warn you now that the next few images will probably shock you like it did me.  And, unfortunately, I really don't have any answers for what all this means for Atticus.  Since Neurosurgery ordered the MRI, we got to meet with them right away.  But we still have to wait to either meet with or have a phone conversation with Neurology.  So let me share what I do know.

I remember when the second brain bleed happened.  I remember the doctor telling me that it was covering his left Occipital lobe (aka the Vision Center), and that it covered part of the Thalamus (part of the Control Center for the brain, which was why the had the 4 days of near constant seizures).  I don't know if I was in shock, or just had forgotten my brain anatomy, but these locations aren't exactly next to each other in the brain.  The Occipital Lobe is near the back, and the Thalamus is near the center of the brain.  I always wondered how it covered both.

That large white area is where the bleed was.

I know.  I'll let you look and let that sink in for awhile.

Here is again from a different angle...

Dr K wasn't exaggerating when he said "massive brain bleed".

This is the "normal" right side of his brain...

This is the left...

And from another angle...

But just so I don't leave you with the wrong impression, there were a few less terrifying images, like this one...

Looking through all the images, it looks to me like a large pocket in the back left quarter, with an arm reaching down into the center of the brain, and a pocket "leaking through" to a much smaller pocket in the back of his brain.  Roughly a quarter of his brain.

As I look at these images, I feel a range of emotions flood me.  I'm angry at the doctors from the Pediatric Surgery team that didn't take the time to just give him some pain medicine before "debreeding" his leg.  I feel guilty and angry with myself for not somehow being able to prevent this.  (Don't worry.  The logical side of me counters with the knowledge that there was absolutely nothing I could have done.  Doesn't stop the feelings though.)  I feel curious, and I have already spent the last few hours researching the brain, what areas I can tell were affected, and what they control for the body, and about an hour on the phone with my sister, who has some knowledge of the brain from her work.  I feel anticipation and almost consuming desire to speak with Dr H in Neurology to get her expertise, knowledge, advise, and ask her the million questions running through my brain about how this effects everything from his seizures, to his learning abilities, to his behavior, etc.  And I also feel absolutely humbled.

That last one may seem a little strange, but I am overwhelmed at the power of my God.  Just from looking at these images, one would think that surely Atticus would be blind.  Its amazing that he lived through such an event.  Much less that he should have the cognitive functions and abilities that he does.  In several of the areas, you can see where the right side of the brain is slightly larger, and crossing over the "mid brain" line.  Possibly to compensate for the left side, and to reform pathways that has allowed him to be able to do all the things that he can.  I'm humbled to be witness of such a miracle, and to be called his mother.  My God is an awesome God.

I wish I had loads more to tell you.  I wish that I could answer the questions that are spinning through my head right now, but I can't.  That's about it.  For now, its a waiting game.  I'll try to be good and update as soon as we learn more.  But for now, as always, Keep on prayin'!

Atticus turned six!!

Its a day today that six years ago I didn't dare allow myself to dream about.  Its a day I worried might never come. But its here. Atticus turns six years old today!!!

We've had such a busy year since last October. Some things have been good developments, some not so great. This isn't going to be a long post because I plan to spend my time playing with Atticus instead of blogging. But I want to say "Thank you" to everyone that's been on this journey with us. Thank you for thinking of us. Thank you for praying with us, and thank you for putting up with my atrocious gaps between posts!  😉

I have so much to be thankful for today. God has blessed me with this little red headed fireball for six years. They've been anything but stress free, but they've also been filled with life lessons that only come by trial and experience. Thank you, God. Thank you for blessing me with another year with Atticus. Thank you for always having a plan for every new situation we encounter. Thank you. 

I'll update this post with pics from the day, but as always, just keep on prayin'!

A picture from each year!

He was so excited by his Oso plush!

A Special Agent Oso themed cake

Presents!

Happy Birthday!

A late night update

Hi folks.

Its late, I can't sleep, and I've been meaning to update again, so here we go...

A lot has happened since my last post. Atticus had another seizure in April, and another one in May. They both happened as he was sleeping for an afternoon nap. Both times he also vomited before having his seizure. They were both a little different from the first one in December in the fact that 1) he was napping-so they happened in the afternoon, 2) he was twiching, but most notably, he seemed to strain his head all the way to his right side, and his eyes were also straining over as far right as they could go, and 3) we didn't have to go to the hospital after either one. Though I did spend a lot of time on the phone with doctors. Basically, since these were really not new, as long as he returned to "base line", there was no need to come in to their office.

Both times were terrifying. To watch your child seize, to see them "not there", to hold them and pray they return to you, is by far one the most agonizing experiences I've ever had to go through. I'm thankful that my hubbie was there for 2 out of 3 episodes, and was home within minutes of the 3rd one. I'm thankful for bosses who understand me calling out of work at the last minute because I'm a total mess.  I'm thankful to God to have Atticus "returned" to me each time, and hearing my pleas.  And I'm thankful that its been almost 4 months since his last one.

*blows nose. wipes eyes. clears throat*

We've met with his new Neurologist, Dr H, and we've followed up with an EEG. The EEG confirmed brain wave patterns consistant of someone with a seizure disorder, but they didn't record any during the session. So next we're still trying to schedule an MRI to get a look at his brain/spine. Neurosurgery actually put the order in because of the spherinx in his spinal column, but both groups are looking forward to the results.  We're just waiting to hear back from cardiology to see if the stint that was placed in his left pulmonary artery is MRI compatible. 

Oh yeah...I haven't told you about the stint placement yet!  We were finally scheduled to have Atticus' fenestration closed back on May 4th, 2015. (The fenestration is like a flow valve/pressure release left open after his Fontan to help relieve lung pressure as his body adjusted to his new circulation.)  The day arrives, we report bright and early to the new hospital, and I'm a total ball of nerves because these doctors (as awesome as they were) weren't there for any of his previous surgeries, struggles, recoveries, etc. They could read his medical record, but that doesn't begin to convey the complex creature that is Atticus.  They rolled Atticus back to the Cath Lab, and we decided to go get something to eat because we missed breakfast. 

While we were eating, Robbie and I just felt a total sense of dread. We knew it was something to do with Atticus. We held hands, prayed for God to protect Atticus, and scarfed our food down and walked back the block to the hospital.  We browsed in the gift shop to see if there was anything we thought Atticus might like, when I heard our names being paged over the intercom.  We rushed back upstairs to the waiting room, and found the Dr who was supposed to be in the Cath Lab with our son.  Then he dropped a big surprise on us.

They were unable to close Atticus' fenestration because his lung pressures were too high when they tried. His new circulation is reliant on his lung pressure being just right. Upon closer inspection, they noticed that the pressure in one lung was higher than the other. That's when they noticed that Atticus had an "elongated pinch" in his left pulmonary artery. It started at 9mm, went to 6mm, and opened back out into the lung at 8mm.  Instead of closing his fenestration, they now wanted to place a stint in his left PA to fix the narrowing.  When he began describing placing a stint on a ballon, and running it up the catheter, etc, I just wanted to puke eveywhere. I began having flashbacks of "The Cath" that went terribly wrong when he was a baby. Robbie was just as green.  I wanted to scream, "NOOOOOOO!!!!!", but I was pretty sure I would have been granted crazy lady status by everyone except for my husband.  The Dr let us know that we didn't have to fix it right away, but by before he was a teenager, it would have to be addressed.  We decided that since he was already sedated and prepped, it was better to address it then, and revisit closing his fenestration in another year.  Thankfully, everything went smoothly, and Atticus was out if the hospital after one night. 

The stint placement has led to our newest journey, with Lovenox and Coumadin (both of which I despise).  Because of the stint placement/location, Atticus had to go on Coumadin (an anticoagulant aka the same stuff that's in mouse posion!) for 6 months to a year to avoid the formation of any blood clots (which would be fatal) as the placement site heals. He has to maintain a certain level in his blood for it to be "therapeutic", so until that level was reached, he also had to receive Lovenox injections twice a day, and weekly blood draws to check his levels.  I thought it was terrible to have to give myself insulin injections during my last pregnancy, but nothing compares to having to chase down and tackle a 5 year old so that I could give him shots 2x a day. He hated them. He would fight, scratch, twist, and try to get away. He would sign "all done" as soon he saw the needle coming. It inevitably left bruises wherever I stuck him because of the Coumadin. Those were a miserable couple of weeks. He's still on Coumadin, but luckily the Lovenox shots are done. And since his levels have been steady, we've been able to go a month before our next blood draw!  Whoo hoo!  Atticus is such a trooper though. He climbs in the chair, sticks his arm out, and even "helps" place the tube on the butterfly needle.  He found an orange balloon in our playroom the other day, and pretended it was a tourniquet, and used an oversized pencil as the syringe. *sigh*.  Its heart warming and gut wrenching at the same time.  He handles it so well, and charms all the new folks he meets, but it stinks that that's his normal.  But I see it as just another of the many ways he amazes me.  

On the more upbeat side, we had an Orthopedic visit and are cleared for 2 whole years before we have to go back!! Hallelujah!!  Thank you, God!!  His new doc thinks we might have to eventually stunt his "good" leg to keep it from becoming a severe length differencebetween his legs, but it would be many years before we would have to consider such an option, and well, in the meantime, I'm just going to pray the "bad" leg can continue to "catch up", and maybe we won't have to cross that bridge.  And I'm just going to enjoy one less doctor visit for a while. 

Other than that, Atticus has continued to be his rowdy, mischievous, little red-headed self. He runs, jumps, climbs, rolls around, chases the dog, beats up on his siblings--especially the toddler, and enjoys watching Special Agent Oso, Mickey Mouse, and Lilo and Stitch.  He's continuing in speech therapy, is getting better at stringing multiple signs together, and is even getting better as using the tablet to "talk".  But he stll HATES wearing his hearing aids. I usually get an hour at a time, tops. Sometimes he won't let me put them in at all. But I keep trying, and some days are better than others. Occasionally, he even asks me for them!  So we keep working on keeping them in longer/more frequently.

Atticus also started kindergarten this year, but I'll save that update for next time. It's late, or early, and I'm finally sleepy. So, good night, thanks for checking in on us, and as always, keep on prayin'!

A visit with his Great-Grandma

Worn out after a long day of fun for his big sister's birthday!

Trying on Daddy's boots, lol!

Happy CHD Awareness Week!!

That's right, everyone!  It's that time of year again. February 7th-14th is National CHD Awareness Week.  And, obviously, if you're reading this blog, you might have guessed by now that CHD is kinda important to me.  :)

There are a lot of statistics out there. A lot are surprising, especially if you don't know that much about CHD.  So I'm going to rattle off a few facts about Congenital Heart Defects. 

--CHD is the #1 birth defect

--CHD strikes roughly 1 in every 100 live births. (Some sources say 1 in 110.)

--CHD kills more children each year than all forms of childhood cancer combined. Yet it receives a fraction of the funding. 

--There is NO CURE FOR CHD. 

--There are roughly 40 different types of CHD. (Atticus has Hypoplastic Left Heart Syndrome.)

--Raising awareness is one way to fight back against CHD. Because with awareness comes funding, and with funding (God willing), comes a cure.  

There are so many more statistics that I could share, but I'll leave it there for now. I would like to share two more things though. One is a song. I found this song last year, and it is a great description of what its like being a Heart Mom.  Take a few minutes right now to go listen and watch the video. I'll wait.......

https://m.youtube.com/watch?v=9qxE_1_6TC8

Done wiping those tears now?  I know. Its a great video. They say a picture is worth 1000 words, so that video spoke volumes. CHD Awareness is not just knowing statistics like I listed above. Its knowing that these are real kids, real parents, real families going through this struggle. These are people like anyone else. CHD doesn't discriminate between black, white, asian, rich, poor, middle class, etc. CHD is a battle that so many children face, yet so little is known about it.

The other thing I wanted to share with you all is a great poem called "Welcome to Holland". Its a poem written about what its like to have a child born with a disability.  I think the author does a great job of conveying the feelings. 

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Well, I think that's about it for now. I'll leave you with a few awesome CHD Memes. Remember to spread awareness, and as always, keep on prayin'!