Growing up

Hey everyone!

It's been a few months since my last update, so I just wanted to check in with everyone with a quick update because O had a little "moment" today. Atticus has been doing pretty well. We had a good summer filled with swimming, trips to visit family, camping in tents, and of course, my nephew came down to visit.  Now that the new school year has started, Atticus is excited for his first Cub Scout meeting tomorrow!!  Can you believe he's old enough to be a Tiger Scout?!??!  I can hardly believe it. 

Ever since Atticus had his fenestration closed back in May, Atticus' retention seemes to improved greatly. He's made good strides in sitting still for longer periods at speech therapy, he's getting better at signing and learning go use his tablet, and things are starting to "click".

Today, God gave me yet another reminder of how far he's come. And maybe I'm getting sappy because it's almost his birthday, but I choked back tears.  I unlocked my car with the key fob, and he ran to get in the car for speech therapy.  I stopped for a few minutes in the doorway to talk to my oldest daughter, and I could hear him open the door to the van door.  I thought, "He's going for the wrong car. I'm going to have to drag him out of the van now."  But when I turned around to start herding him into the right car, I was floored by what I saw. He had indeed gone to right car, noticed his booster seat wasn't in there, knew it was in the van, retrieved the seat, closed the van, and was putting his chair into my car.  All. By. Himself.  I smiled like the Cheshire Cat, helped him buckle up, got in myself, slipped on my sunglasses, and let the sobs come where he couldn't see.  (I didn't want him to think he did anything wrong!)  I couldn't believe it.  My little guy isn't so little.  God has allowed him to continue to grow in ways that I couldn't imagine almost 7 years ago.  My heart overflows with gratitude at the things Atticus continues to show me he's capable of doing!  As always, keep on prayin'!

It finally happened!!

Hey everyone!

I just wanted to share a quick update. Life has been going pretty well around here. Most recently though, we had something awesome happen!  On May 9th, Atticus was able to have his fenestration closed!!  His new circuitry is finally complete!  His oxygen sats have been staying in the mid-90s.  I've never seen him look so pink! I can't believe this is the same kid that we used to be happy so long as they stayed above 75!  He handled the cath like the total rock star that he is. One quick night in the hospital for monitoring, and we were on our way home the next day.

As expected, he was kind of sore for a little while, but it didn't slow him down for long. He now has even more energy than before!  *insert happy but terrified "yeah!"*  We've mostly just been enjoying the warming weather with a few ventures to the pool already, and finishing off his 1st year of school. He's blossomed a little with his vocabulary. He's added several new signs recently, and refers to my phone as "Batman" because of my phone case, lol.  

All in all, life has been pretty good recently. Thank you for checking in on us, and I'll keep updating as things happen. Most importantly, keep on prayin'!

Our Appointment with Neuropsychology

Hello everyone!

So the big appointment with Neuropsychology was last Wednesday, April 6th. I was pretty nervous about the appointment, as I had no idea what to expect.  I was afraid of what they were going to tell me, and what it would mean for Atticus.  But as always, God sent me a sign to remind me that this too was all a part of His plan. 

I really liked the doctor we met with, Dr M. He was very patient, asked a lot of questions, and genuinely tried to get to know Atticus and his unique history.  While he and I spoke, his two students/assistants took Atticus to another room to begin the lengthy testing/assesment process.  We joined them a little while later to have the doctor conduct some more testing.

Atticus was true to form. He was everywhere, into everything, and doing as he pleased, lol.  Dr M and his assistants were patient, smiled and laughed a lot, and let Atticus be Atticus.  He was his usual mischievous self for them too. While in the other room with the assistants, he decided to drop one of his hearing aids into a locked cabinet through a small opening, lol!  We had to find someone with a key so we could retrieve it!  Overall, he participated fairly well, and when he decided he'd had enough of "performing like a trained monkey", he refused to perform a single task asked of him (even though they were tasks he had done before and was capable of doing) and would only sign "all done".

I'm still waiting for the official report to be mailed to me, but the brief overview with Dr M was really encouraging.  He said that Atticus has developmental delays (we already knew that bit), and that he would place Atticus at the level of a 4 yr old. Again, nothing really surprising. Then he told me the part that had been weighing on my mind since Atticus had the brain bleeds as a baby. He said that even though Atticus had developmental delays, he felt that Atticus was fully capable of learning and with the right therapy/intervention he could likely eventually "catch up".  I was so happy I could have cried!!  Thank you, Lord!!  Thank you, thank you, thank you!!!  Even with roughly 1/4 of his brain being damaged by the bleeds, my son is capable of learning. He is capable of becoming self sufficient. He is capable of leading a "normal" life.  It's news that I was afraid I would never hear.  And it's more proof that I serve the mighty God. That NO thing is impossible for my God. And that He is the Great Healer.  The feeling still overwhelms me with gratitude. 

We'll revisit and reassess Atticus with Dr M next year to see how Atticus has developed and grown.  In the meantime, Dr M gave me some contacts here locally to work with Atticus on learning to "slow down" and how to focus, so that he can learn and retain information better.  That's the next step for Atticus.

Next up on Atticus' calendar is an appt with the Cardiology team at UAB to assess him for his upcoming Cath procedure to close his fenestration.  That'll be next week, with a date for the Cath set for May 9, 2016.  Thank you for continuing to keep up with Atticus, for praying with us, thinking of us, and cheering us onward.  Please continue to pray for Atticus, his upcoming procedures, and for this new leg of his journey!  We'll update as we get new developments!

My "reminder" from God. I saw this on my FB News Feed the night before our appointment. 

This guy is getting so big!!

CHD Awareness and another seizure

Hello everyone!

Its been a while, and there's a lot to update. First, with the MRI and Neurology, we finally heard back from Dr H. She basically told us that there's a few things to be learned from the MRI. Atticus will always be at risk for seizures. (Boo, and that will be reiterated shortly...). She also said that due to the age of Atticus at the time the bleed happened, you can't look at his MRI the way you would an adult's.  Since his brain was still forming at the time, many of the damaged pathways were "rerouted". We can't look at it and say, "This part of his brain was damaged, so we can expect xyz to be affected."  Her recommendation is to have a full neuropsychological evaluation done on him (which would be repeated yearly), to try to understand exactly how Atticus' brain was affected and a get better idea of what to expect from that.  We have that appointment (with a new doc) set for April. I'll update once we have a chance to learn more.

Next on the list of updates, Atticus had another seizure today. This one was probably the worst one since the first one at the end of 2014.  He had crawled into my bed early this morning after the Hubbie had left for work.  At around 8:30AM, he coughed hard like he was going to throw up, so I scooped him up and ran him to the bathroom. He didn't throw up, but decided he wanted to sit on the toilet to go potty.  He walked out of the bathroom, and I decided to take a turn. Atticus walked into the living room, where my Mom was changing the baby's diaper, still half naked, holding his undies. My mom fussed at him to put his clothes on, but she noticed he seemed confused/dazed. She held his undies open for him to step into, but he couldn't pick his leg up more than a quarter inch off the ground. So she guided him into her lap, and he began to stiffen, straining his head to the right, and slightly twitching. He was having a seizure. Mom called to me, I hurried up in the bathroom and came running. I moved him from her lap to his side, and held his head while he seized. It lasted for over 5 minutes. He had drooled thick mucus all over my arm and the floor, so I cleaned off quickly after he had come to, and moved him into my bed to get him comfortable. Normally, Atticus will immediately be drained and pass right out for about 2-3 hrs.  Today, he would toss and turn, struggle to get comfortable, fall asleep for a little while, then wake up to puke thick mucus/bile, and go right back to sleep.  He slept for almost 6 hours. Every time he would puke, his heart would race upwards of 175bpm, and take several minutes to come back down.  During this time, I called Dr H's office, and they decided to up his dosage of Keppra from 3ml twice a day to 4ml/2x daily.  Since he had "returned to baseline", we didn't need to go to the hospital, unless we felt something else was wrong.  Thankfully, by this evening, he was back to watching TV and eating/drinking with no more nausea.  I'm still struggling to get him in bed for tonight, lol!

As you may know, this is CHD Awareness Week.  We made another submission to Mended Little Heart's #RockyourScar contest. I even managed to get all 4 kiddos in it!  Its crazy to think that just 4 days before today's seizure, we were all laughing and making this photo. Today reminded me of just how fragile Atticus really is, despite how tough he always seems. He's my little red headed fireball, but today that flame was burning low. He just looked pale and frail. He struggled to breathe at times. He fought. And he won again for today.  It reminded me why CHD Awareness is so important because there are so many children fighting each day.  There are some who are living life to its fullest, and those struggling to stay in the fight. There are those who are undiagnosed until its too late.  There are those who lose their battles. 1 in 100 children are born with a CHD.  1 in 5 of those children won't make it to their first birthday.  CHD research is vastly underfunded.  Its the number one killer of children in the US, yet receives a fraction of the research money it needs, pennies on the dollar compared to cancer research, adult heart research, etc. The more awareness we can raise, the better research and procedures that can be developed.  The better the research, the more lives that can be saved, and the fewer "unfortunate" incidents (like what happened with Atticus) will happen.

I know that through all the things that have happened on this journey with Atticus, my God has a plan.  This path has led me to understand a fraction of the love God must have for us.  This journey has taught me how to love everyone better because CHD doesn't discriminate. It affects the rich, the poor, black, white, asain, hispanic, etc.  It has shown me that many things are out of my control, but I can bring it all to Him in prayer, and I can spread awareness.  And so can you. Love the people around you. Hugs your babies a little tighter because you're never promised tomorrow with them. Forgive a little faster. And as always, keep on prayin'!

Our submission for 2016!

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'!

The longest 72 hours

The past 72 hours have been a whirlwind. I feel like I've aged at least 10 years all at once. For those of you who don't know what's happened, I'm going to describe the events as I recall them, have them seared freshly into my memory. I'm lying in bed now, unable to sleep, Saturday's events playing out over and over again. 

We were on vacation, visiting my Dad and step-mom first. We had gotten in after a long day of travels the night before.  Robbie was getting ready to go play a round of golf with my Dad. I was taking advantage of him being up before me to laze in the bed with Atticus for a few more minutes before Robbie would leave, and I would have to get up. I hadn't put my glasses on yet, but I saw Atticus squirming in the bed next to me, and assumed he was dreaming. He coughed a few times, and then I heard the sound of him throwing up on himself. 

I scooped him, and carried him into the bathroom, noting that the puke seemed moucousy, and thinking his sinuses had probably just drained onto his tummy making it upset. I went to set him on his feet so that if he needed to puke more, he would be there at the toilet.  He was limp, and I remember really looking at his face, about to tell him that he needed to stand up for me, and my heart dropped. His face was pale, his eyes were open, but Atticus "wasn't there".  I went to the floor with him, my heart pounding, my brain screaming, "No, God!  Please, NO! Please don't take my son!"  In the next split second, my brain was registering that he was twitching.  He was having a seizure. I waved my hand in front of his eyes, calling his name. Robbie must have heard the panic in the tone of my voice because one moment I heard him talking in the kitchen, the next he came running around the corner.

"Is he ok?", was his first question. "No" I managed to choke out.  "I need the..", and my words failed me. I love my husband. I joke and say we share a brain some times.  He knew exactly what I meant. He ran into the bedroom and began ripping the suitcase apart, and returned a moment later with the new travel pulse ox we had just gotten for Atticus. I turned it on, placed it on his finger, and waited for just a few seconds for those little numbers to pop up.  It felt like an eternity.  57.  No, no, no...not 57!  My heart dropped and raced even more.

"Oh God!  Please!  Please be with my son!," I said in my mind.  I heard my step mom cry out from the hallway, "Should I call an ambulance?"  "Yes!,"  Robbie and I said at the same time. I looked at him. "I have to get dressed". 

"I gotcha," he replied. We traded spots, and Robbie continued to hold and care for our limp, pale son; helpless as Atticus continued to seize in his arms.  There with him to try to comfort him as he started to "come to", scared, confused, and exhausted. 

I don't believe I've ever gotten dressed so quickly. I threw on my clothes, threw my shoes on, and retained enough forethought to run out to the car to grab my wallet because Atticus' insurance cards were in it. I ran back inside and continued to get myself ready, grabbing things for Atticus, and trying to make sure I took things like my phone charger, and Atticus' Cookie Monster.  Robbie was still with Atticus during this time, putting fresh clothes on him after removing the puked on ones. 

In what seems like the next moment, I climbed into the back of the ambulance with Atticus. Robbie followed behind in the car. Everyone else was with the Grandparents.  The EMT hooked Atticus up to a monitor.  Atticus was conscience at this point enough to voice his displeasure.  The sun shined in through the glass, and Atticus squeezed his eyes closed and tried to roll over as best he could to get the sun out of his eyes. I remember thinking that was a good sign at least. The EMT was rattling off questions, and I answer them almost on auto-pilot. My gaze was fixed on Atticus, scanning him visually from head to toe, drinking in any sign of anything unusual or reassuring at the same time.

We arrived at the nearest hospital, and as we were walking into the doors, I saw Robbie running up to join me. We went in together, and begin to retell again the events of the morning. I then begin to answer more questions about his medical history, and I know immediately that we won't be staying here. Its painfully obvious that they are totally unequipped to deal with Atticus.  The medical terms (which I've heard and used with his specialist numerous times) I was using to describe Atticus, his special heart, and complex medical history left the staff stunned. They were kind, and got him stablized, but quickly agreed Atticus needed to go to MUSC.  The nurse even talked her friend into letting me into the cafeteria early while we were waiting, and then paid for my lunch. Those acts of kindness were so needed and appreciated. 

The medivac team arrived to fly Atticus up to MUSC. We recounted the events again, and also tried to give them a crash course in sign language, since we couldn't go in the helicopter with Atticus, and it would be a 2 hr drive for us. Robbie and I held hands and watched as they loaded Atticus in the helicopter, crying and upset that we weren't coming. It broke my heart.  I hoped that he would get in the air and go to sleep. Turns out he did just that. 

Robbie and I started back to my Dad's house. I made phone calls, trying to make arrangements, letting my Dad know we were on the way back to his house, and our game plan for the older kids, the baby, and the dog.  I hung up the phone with him so that I could use the GPS, and I just lost it. The stress, fear, and emotion of the morning came crashing down on me like a ton of bricks. I began to sob uncontrolably, Robbie held my hand and reassured me. I told him I knew it was ok, but I needed to get this one out. We also prayed and thanked God for his providence through the whole situation. Thank you that we were all still home. Thank you that I was still in bed with Atticus. Thank you that we were with family who could take care of our other children and dog while we went with Atticus. Thank you that we were going to MUSC, where he has had all of his medical history, and where they know him. Thank you that my sister lives there and could house us and dog sit while Atticus was in the hospital. Thank you most of all that my son is alive, and appears to be ok.

We pulled up to my Dad's house, already mentally exhausted, but just beginning. We went inside, shared our perspectives of the morning, updated them, and joked about how I was really ready for my coffee at 1:30PM.  Robbie went into the bedroom, and I heard him say, "Oh!  So its going to be one of those kind of days!"

The baby had pulled off her poopy diaper, and smeared it all over herself in the play pen where she had been napping.  This put us about 2.5 hrs behind leaving for MUSC because we had to bathe her, and her lovey blanket, which had also fallen victim. You know, the one she can't fall asleep without. *sigh*. As soon as the blanket came out of the dryer, off we went. The meantime was spent cleaning, eating some more lunch, finalizing plans for the other kids, packing up the car, and talking with the doctors at MUSC.

We finally got to Charleston, dropped our dog to my older sister, and headed to the hospital.  The minute Atticus saw me coming into the room he broke into a big smile, then started crying, and then alternated between the two. He was so happy to see me. I can only imagine how terrified he must have been. Not understanding what has happened. Not knowing where Robbie or I were. Not being able to communicate with any of the doctors or nurses because they didn't know sign language.  I felt so terrible that it had taken so long to get there.  Thankfully, the baby was allowed in the room with us during visitor hours, so we could all be together.  Atticus was so happy to see Robbie and the baby come walking in the door shortly after me.

We once again recounted the events of the morning.  They ask about the brain bleeds and seizures Atticus had as a baby.  Shortly after we arrived, the neurology department came in to hook Atticus up to an EEG overnight.  He was actually pretty good while the technician placed all the electrodes on his head. He was happliy distracted by his Signing Time video. I wish I could say the same for his behavior for the poor girl who came to do his EKG. 😞

The next 24 hrs were a blurr of watching TV, occasional checks by the nurses, and letting the EEG run. Robbie spent the night with Atticus in the hospital, while I took the baby back to my sister's house once visting hours were over.  Then we finally got a visit from neurology. 

The neurologist explained what we were seeing on the screen for the EEG. The blue lines were the left hemisphere. The purple lines were the right side. Both sides had great activity. (Thank goodness for some good news!). And this was their best explanation for what happened...the brain bleeds Atticus had as a baby left damage where the blood was. (That was seen on MRIs from when he was a baby.). They could also tell that these pathways had regrown themselves around the damaged areas, as seen by the level of activity on the EEG.  When the body is sleeping, the neurons in the brain tend to fire more "freely" because the brain isn't "bogged down" with impulses from the body. (ie You don't usually register being lightly touched when you're in deep sleep.)  Since Atticus' neurons were firing more freely, and since they have this unique physiology, they most likely "misfired" causing the seizure.  They're not sure what triggered the misfire. All the traveling, if he was dehydrated, etc.  But it happened.  They decided to put Atticus back on Keppra (an antiseizure medicine), and were ready to discharge us. But, not so fast!  Two minutes later, cardiology walked in and said they'd like to keep Atticus one more night just to observe him since he was starting a new medicine. Bleck!!  I just wanted the nightmare to be over!  But at least they disconnected the EEG, and he could move a little more freely around the room. 

We were discharged the following morning with a new prescription, and are now safely back home. Atticus was so ready to leave the hospital, he started handing me bags from the little wagon he was in on his way out of the hospital, then jumped out with no shoes and ran to his carseat.  We're exhausted, but so glad to be home. This vacation certainly didn't turn out as planned, but we are thankful that God saw us through every step of the way.  Hug your babies a little tighter tonight because you're never promised tomorrow with them. This is just the beginning of yet another adventure with Atticus.  He already amazes me at his resiliency. As always, keep on prayin'!!  

Ready to come home!!

Atticus is 5 years old!!!

Today is a big day!!  Its Atticus' 5th birthday!  Its a day that I have longed for, but feared would never come. Its a day I have been looking forward to since before he was even born, and I'll tell you why. I remember reading an article in a medical journal shortly after we had learned about Atticus' heart condition. I was pouring over the internet trying to learn anything and everything I could about HLHS. I remember the article stating that if a single ventricle kid (like Atticus) could survive through all 3 stages of open heart surgery and to their 5th birthday, then the % chance that something could go wrong dropped dramatically.  Today is that day. Atticus had the last of his 3 stages (the Fontan) in May, and today is his 5th birthday!!  

I know, of course, that this doesn't mean that things are smooth sailing from here. Atticus will always be at a higher chance for stroke, heart attack, etc.  He still faces plenty of challenges ahead physically, medically, developmentally, etc. But today I choose to celebrate the miracle God gave to me, my son Atticus. 

He's had a pretty good day today, watching his favorite show, Pingu. He's been running around playing with his brother and sisters. We just ate some cake, and are taking it easy for now. It was the first year that Atticus was able to blow out his own candle. He's come such a long way!!  Unfortunately, we are all a little sluggish from a head cold.  We plan on getting some take out a little later on, and watching a movie as a family. Its not an exciting day, but like I said, we're all a little sick.

I want to take a moment to thank all of you that have followed us in this journey with HLHS. Thank you for continuing to keep us in your thoughts and prayers.  As I look back through this blog, its hard to believe all the things Atticus has been through. I reread some of my updates, and the pain and heartache of those days come rushing back as if it was only yesterday.  It also causes me to pause in thankfulness to God for all the things He has done. Time and time again, God has used Atticus to show that He is control, and that prayer really is a powerful tool.  He gave me a son that changed me in ways I would never dreamed possible, fixed in me things I never knew were broken, and caused me to open my heart to others in ways I never had before.  I am thankful for each day that God allows me to spend with Atticus. He really is my miracle baby (though not such a baby anymore!!).

So I'm going to wrap up this post for now. I'm going to cuddle my sweet little man on the couch, something I couldn't do on the day he was born.  I invite you to go back and reread some of my posts. Especially those between October 2009 through March 2010. Reread, cry with me, and celebrate with me as I am so thankful to have Atticus with me today, 5 years after we began this crazy rollercoaster ride together. And as always, keep on prayin'!

Atticus liked opening presents!

A Pingu inspired cake

  Its also the first year that he really grasped that it was his birthday. 

 

Blowing out his candle all by himself!

He had to double check that blowing out his candle was ok, lol!  

Home Sweet Home

Hello Everyone!


Just wanted to let you know that we made it HOME!!!  I can hardly believe that we made it in and out of the hospital in exactly one week!  Atticus soared through his Fontan!  I am so thankful to Dr Bradley and all the awesome nurses at MUSC for the awesome care they gave to Atticus.  I'm thankful to all of you who prayed for Atticus during his open heart surgery and recovery.  I'm thankful for my wonderful sister and brother-in-law for opening their home to me.  And I'm thankful to God for all the ways He watched over us during this time.  Atticus is home continuing to heal and rest.  He was so happy to come home and see his brother and sisters.


I wanted to share one of my favorite moments with you all.  Shortly after my last post I knew we were being discharged, so I packed everything up while Atticus was taking a nap.  Once he woke up, he was ready to go back to the Atrium.  Robbie was almost there, so I told him that we were going to wait for Daddy.  He gave me the funniest look like, "Daddy isn't here."  But he was content to sit in the wagon for a few more minutes watching Signing Time.  We did this back and forth a few more times as I waited for Robbie to come walking into the unit.  Finally, Atticus was losing patience with me so I signed, "We're waiting for Daddy to go home."  He perked up a little, looking at me like, "Did you just say home?!"  As if right on cue, Robbie came walking into the unit.  Atticus ducked his head, threw up his arms, and had a sheepish grin on his face.  Robbie scooped him up, Atticus buried his face his Daddy's neck and started crying for joy.  His Daddy was there to take him home.  We made it home safely and soundly, but pretty late at night.  Atticus crawled straight into his bed, grinned, and went to sleep. 


Thanks for continuing to check in on us, and as always, keep on prayin'!

Atticus sees Daddy with the car! 

Post-Fontan Day 7

*yawn*. Hello everyone. We had a rather long night last night. Thankfully, Atticus was asleep by about 9:30PM.  I however, didn't get to sleep until much later because we have a new neighbor, which I have dubbed "Screaming Mimi".  It was one of those nights where I actually envied and was thankful for Atticus' deafness.  Then, Atticus woke up at 2:30AM because they had come in to check his vitals, and wouldn't go back to sleep until 4:15AM.  Then the nurse came back in to wake him up at 5:45AM to give more meds and to weigh him. Thankfully he was so tired he went pretty much straight back to sleep.  Just a very tiring night. 

But on the good news front, Atticus had his last chest tube removed today!!  (Strike up the Hallelujah Chorus!).  We had another set of chest x-rays afterwards so the doctors can make sure there's no build up of fluids in or around his heart and lungs. Which means one step closer to disch@rge!!

After his x-ray, we went downstairs to the Atrium to play for about 30 mins before they closed for lunch. He painted a picture, and actually got out of the wagon today to run around. I could tell he's feeling much better today sans chest tubes.  We then headed back upstairs where we played in our room blowing bubbles, played with Play-Doh, and our cars.  

Next, we had our "disch@rge echocardiogram" to again, make sure everything looked good, that our function was good, and to check for fluid build up.   Atticus is definitely over being in the hospital. He was pretty good during the echo, but he was ticked off by the end of it. So much so that he took a nap and is still sleeping. 

In the meantime, the words "h*me" and "disch@rge" are being thrown around pretty frequently!!  We even had the ladies from the pharmacy bring our meds to take with us!  I'm trying not to get overly excited, but its an understatement to say I'm ready to sleep in my own bed again. Please continue to pray for Atticus' healing and that a trip h*me is in the near future!  I'll update once we know for sure!!  Keep on prayin'!

Silly Atticus!  That's not your bed!

Up, walking and playing!

Post-Fontan Day 5 & 6

Greetings from Chucktown everyone!  We've had a pretty good few days here.  There were some ups and downs, but thankfully more ups than downs. 

Atticus woke up kinda cranky yesterday, but it was also time for his next dose of pain meds, so once those were in his system, he was a little more pleasant. He got a little nauseated with the beginning of breakfast after about 1/2 of an egg, but then managed to keep down a whole pancake, a few bites of yogurt, and some more apple juice.

After breakfast, we headed down to the Atrium to play for a little while. He played with the cars, some instruments, and then spotted a pretend phone, which was a hit for quite a while. We stayed until they closed for lunch, then we headed upstairs.  While we waited for them to bring his lunch tray, Atticus refused to get back into his bed, so I let him join me on my couch bed until his food came. Once it got there, Atticus managed to walk for the first time since Wednesday. He walked the 10 or 15 feet from the couch to his bed with just holding my hand loosely for stability.  His nurse also decided to wean of his oxygen since he had been on just .25L. Hooray for progress!!

Lunch was another round of nausea after he had eaten only a few bites, but he managed to then polish off a full bag of potato chips, 1/2 a bowl of mac n cheese, 1/2 a bag of mini chocolate chip cookies, and a few bites of chocolate pudding. (I know. Awesome diet for a heart patient, but at least he ate and kept it down!)  We had apparently had so much fun downstairs that he was completely exhausted and actually took a long nap (partially because I talked his nurses into leaving him alone instead of waking him up for vitals).

Once Atticus woke up, we played in his room for a bit.  I had gone to the gift shop downstairs and got him a "paint with water" book while he was sleeping to help keep him occupied during the times the Atrium is closed. Then we got a visit from a very special visitor.  Bristol, a spaniel mix and one of MUSC's "Hairy Heroes", came to visit Atticus!  He was super thrilled because he absolutely LOVES dogs.  The nurses put an extra blanket across the bottom of his bed so that she could lay in the bed with him. She stayed for about 20 minutes, and Atticus just hugged her and pet her.

After Bristol left, Atticus wanted to get out of the room. The Atrium hadn't quite reopened yet, so we ended up loading him in his wagon and just wondering the 7th and 8th floors of the hospital until it opened at 5PM.  We played there until 6PM when it was time to go upstairs for some meds...and a dressing change on his chest tubes.

Atticus was NOT happy with the dressing change. The chest tubes are really painful, and pulling medical tape off of them is the last thing he wanted to do. Atticus has a tendency to not breathe properly when he's crying really hard. So much so that another nurse (the one who monitors all his numbers at the nurses' station) ran into check on him because his oxygen saturation had dropped into the 50s!!  He was a deep shade of purple by the we finished and had to be put back on oxygen for a little while.

We went back downstairs to the playroom for a little while, but Atticus was still pretty cranky, so we didn't end up staying for long.  We went back to his room for dinner (which he just nibbled, but didn't get nauseated with at least!).  He ended up being put back on .25L of oxygen because his sats were running a little low. He was pretty fast asleep by 9PM, so I snuck off to wash some clothes. 

Today has been a busy day for Atticus.  After morning rounds, Atticus had one of his chest tubes AND the line in his neck removed!!  Hooray!   That means we're down to just one chest tube and some oxygen!  Way to go, Atticus!  This also meant that we had to go back downstairs for another chest x-ray. The doc came down a short while ago and said that there was just a little bit of fluid in his left lung where the tube had come out. They'll do another x-ray in the AM just to check on it. Please pray that this will resolve itself!

Atticus hasn't had much of an appetite today. He's been drinking plenty of fluids, but I've only managed to get 3/4 of a butter biscuit and a few bites of egg in him. He flat out refused to eat any lunch, even refusing the ice cream I bought him. I've ordered some dinner for him, so hopefully I can get more food in him. Please also pray that his appetite returns to stay, as that will play a factor in how soon we can get out of here.

We made a trip to the Atrium earlier today, had a visit from Aunt Di, and took another good nap this afternoon. The docs have also switched his pain meds from every 2 hours to "as needed".  He seems to be doing ok with the change, but its more important to try to stay ahead of his pain.  All in all, its been a good few days with plenty of steps in the right direction. We still have lots of healing to do, so please everyone, keep on prayin'!

 

Playing in the Atrium

The sweet dog that came to visit. 

A little Versed before our chest tube and neck line was removed. He was so loopy!

He was passed out while we waited for Radiology to come get us. Lol!

Post-Fontan Day 4

Hi all!  I realize it'll actually be Post-Fontan Day 5 by the time any of you get to read this (because its already almost midnight on Day 4), but we've had a very busy Sunday!  First, we made it 8D late yesterday!!!  Hooray!  Now I can actually stay in the hospital overnight with Atticus.  He was like a completely different kid the minute we got up here. He started smiling and giggling, and was actually happy!  A complete 180 from being in the PCICU.  Second, our heart buddy from www.mom2lo.com got to go home today!!  We are so thrilled for them!  He had his Fontan on the Friday before ours, and he has done amazingly well.  What a rockstar!

We've had a pretty good day here on 8D. It all started with breakfast...Atticus actually wanted some today!  Hooray!  He ate a whole egg, an almost whole bowl of cereal with whole milk, 3 bites of vanilla yogurt, and 1 bite of a blueberry muffin!  Can you tell its been since Tuesday night since he really ate anything?!  We managed to keep it down along with some apple juice. 

Before lunch, we had another awesome thing happen...Atticus got his center chest tube taken out!!  Oh Lord, you are too good to us!  That means he only has two chest tubes left to go. Yay!  Those are still draining though. The docs noticed a small pocket of fluid around Atticus' right lung, so I'm not expecting those out any time too soon. 

We next attempted some chicken strips and french fries for lunch. That didn't go as well as breakfast. Atticus managed to eat most of 1 chicken strip and a few fries before his lunch decided to make a grand reappearance. :(  I think it was too heavy on his little tummy. He did manage to keep down a few bites of vanilla pudding and half an ice cream bar, so that's progress, right? Lol.

Next, we finally got Atticus comfy in a pair of his own pajamas and headed down to the Atrium (aka the really awesome playroom).  Getting him down there is still a bit of an ordeal since he has chest tubes, the collection boxes attached to each tube, an oxygen tank, and the wireless monitor/leads that allow the nurses to track his O2 and heart rate, even when we're downstairs.  His little wagon was all loaded up!  But it was all worth it to see the smile on his face once we got there and he started playing with toys. He was so happy!  We stayed down there for the better part of an hour and a half; until he turned pale and was about to fall asleep sitting up. I told him we needed to head upstairs and he kept telling me "no" and that he wanted to play, but I wheeled him back upstairs and he didn't really try to fight me.

We also had Paw-paw and Grandma C come visit us today. They surprised Atticus in the playroom and brought him a sweet little plush Snoopy. Then they followed us upstairs for what was the only "bad" part of today.

Once we got back upstairs, Atticus had to have the dressing changed on the IV line in his neck. The dressing had started to peel off, which was bothering him and causing him to mess with it, and we definitely don't want that line to come out because it would mean having to get stuck with a needle over and over again everytime the nurses had to draw blood for his labs.  Not ideal.  Changing that dressing is a "sterile procedure", so Atticus had to wear a mask (which he hated) and ended up with 3 people holding him still so that his nurse could clean the site and change the bandages. And unfortunately, its not quick like putting on a new band-aid, so by the time it was all said and done, he was beet red and sweaty from struggling and crying the whole time. :(  But the good news was that he got a little Oxy with it, so he didn't stay mad for long!  Plus I crawled into his bed to cuddle him for a little bit, so that made him happy. 

After Paw-paw and Grandma C left later in the evening, Atticus and I just sat around watching some "Signing Time" and playing on the tablet. He never would take more than a 15 minute power nap, even though I could tell he was absolutely exhausted. (Just goes to show what a fighter he is!). So I ordered him some dinner, which he managed to keep down. (Meatloaf, mashed potatoes, and a brownie for dessert!). We watched some more TV, and he continued to refuse to fall asleep, so I turned off the TV and sat in a chair out of his direct line of sight so that he would go to sleep.  He finally passed out a little after 10PM. Whew!  They weren't kidding when they told me he would have more energy after the Fontan!  Lol!

All in all, it was a busy and productive day here on 8D. We still have a long way to go with healing before we can make it out of here though. Thank you all for continuing to check in on us. It means a lot. But mostly, just keep on prayin'!  (Its doing wonders!)  ;)

Our big room on 8D!

Our failed attempt at lunch. At least he felt like feeding himself!

 

He was so happy to get dressed because he knew that meant he was headed out!

All loaded up in the Atrium!

A wider view of the awesome playroom!

Hi there, Handsome!  I've missed that smile!

One exhausted little boy!