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!
