It's been a minute...He's 12!

We are way past time for an updated blog post.  

Tiernan is now a cool, confident 12-year-old who goes to my school!  He is rocking it in 6th grade and says his class is his most favorite ever! He is learning to play cello in the NVI orchestra and also takes horseback riding lessons and gets to start swimming lessons again since before the pandemic hit. 

Oh.  Also, there has been a pandemic that shut us all down for a year and a half.  We have moved to a new house, added another puppy, and we are all fully vaxxed, boosted, and ready to move on already!

I also just looked at the last blog post which was just before his MRI for his seizures.  The long and the short of that was that it was definitely abnormal, but ultimately it was due to scar tissue, likely from interventions as an infant.  (my own personal opinion that was sort of corroborated by Dr. Korol.)  After about 2 years on Keppra (and the rage that accompanied the Keppra) Dr. K ordered a 24 hour EEG to see what was going on and the great news was that she saw absolutely no seizure activity and promptly D/C'd the Keppra.  Thank GOODNESS!  That was no joke where the mood swings were concerned. He is now considered seizure-free but we still have some rescue versed just in case.   

With regards to his heart, Tiernan has been incredibly stable for a long time.  We feel so fortunate and have been so grateful to Dr. Park and Northwest Children's Heart Care.  However, our insurance company dropped them as providers and, due to a glitch during open enrollment, we ended up not being able to switch to an insurance company that would allow us to stay with Dr. Park.  So we have made the move to Seattle Children's South Sound Clinic and had our first appointment with Dr. Penalver today. 

The 12-year-old telling mom she does NOT need to document every single thing!

She disagrees.

    

Tiernan and his new cardiologist, Dr. Penalver

Because their records have a gap of 12 years (the last echo they have of his heart is from 2009) he needed the most in-depth echo as well as the EKG and he won the grand prize of a 24-hour Holter monitor.  He is unimpressed with the archaic technology involved with that and just doesn't get why they don't have a better option by now.  We will have those results in the next 2 weeks or so.

Regarding his heart, Dr. Penalver is really impressed with how he is doing.  As we already know, the main thing we are watching is his mitral valve.  That is holding steady at mildly moderate (or moderately mild?) regurgitation.  He said that there is no reason to rush into any intervention since he's been so stable and he doesn't seem to be having any reduced energy or exercise intolerance.  It also seems like Dr. Hanley might be closer to retirement than Tiernan is to needing his valve replaced. In light of that, we talked a little about the surgical staff at Seattle Children's, which has changed a lot since 2014 when Dr. Chen was there.  Dr. McMullan is the Chief of Pediatric Cardiac Surgery now.   So it is probably for the best that we are now a little more connected to SC Cardiology at this point.  

I should probably spend a little more time on that valve timeline though because that was pretty great news.  Dr. Penalver even said it's possible he will "never" (????!) need a new valve?  That is not the most likely outcome, but we are going to just continue to let his exercise tolerance and heart function tell the story.  As long as nothing concerning comes of the Holter monitor, we will probably not see him again for another year.  

I continue to be amazed at our good fortune where cardiologists are concerned.  If we can't be with Dr. P(ark), then Dr. P(enalver) will be a great alternative.  

I guess we will call this a dress rehearsal

So this morning we were up and out the door by 5:35 to get to Mary Bridge Childrens Hospital by 6am for an 8am MRI.
First ball dropped was that they hadn’t gotten the records from the pediatrician for last week’s history and physical (H and P). The fact that they are all using the same charting program (Epic) should mean that this is available to all those in the MultiCare system. But somehow, they did not have the report.
Ball #2: in addition to the H and P from the past 30 days, for a kid going under general anesthesia, it is required that the referring doc come and do ANOTHER H and P within 24 hours prior to the procedure. But because this is an unusual scenario where the referring doc ISNT actually  someone who has to be there for the procedure (because it usually isn’t done under General Anesthesia) they don’t seem to get the memo that they are supposed to do this. So Dr. Korol is on vacation and they have to find another neurologist to come check him out.
Ball #3: this is the one that meant none of the other balls mattered anyway. His orthodontic expander. We had mentioned this way back in the beginning of December when we scheduled this MRI. It’s metal. Should we be concerned? The MRI schedulers didn’t know and assured us they would find out. They didn’t find out and/or they didn’t tell us that it would need to be removed prior to the MRI because it is made of stainless steel and could heat up and cause tissue damage.
GAH!!!!!!
MRI cancelled.
Rescheduled for tomorrow. They tell us everything is set and Tiernan is having his expander removed today at 3 to allow this to take place. The interesting thing is, his orthodontist has decided it’s okay to be done with it and we will just leave it off and he will have his braces put on in a few weeks. So that was an unexpected outcome from today’s frustrations.
So Jason, fortunately, is able to get tomorrow off and will take Tiernan in for what we hope will be the actual MRI. However, after all the issues today, they are going to try to do it without sedation after all. We will still prep him for the possibility of general anesthesia (no food after a certain time) just in case he can’t keep the wiggles at bay.

We did get to express our frustrations with someone higher up in the chain who apologized profusely but also didn’t have a lot of explanations for why these gaps in communication keep happening. She said it happens only occasionally....no surprise it happens with Tiernan. If there is a curve ball to be thrown (and dropped) we tend to experience it.

Welcome to the seizure club

So Tiernan definitely has been having seizures.  

Dr. Korol is not surprised by this.  

She did say that the EEG looked mostly just like she expected....

...but a little bit not.  

That is the Tiernan way.  

There's most, there's some and then there's Tiernan.  

He is writing his own version of everything in this world.

He never follows the rules.

So Dr. Korol wants him to have that MRI to get some more clarity on what is happening.  

She is mostly convinced these are still the Benign Rolandic Seizures, but the EEG was just different enough that they could be Full Body Seizures.  

Either way she is not eager to prescribe medication unless they start happening during the daytime.  

A seizure in and of itself is not the dangerous part.  If they only happen during sleep, there isn't really much of a risk, aside from falling out of bed.  Daytime seizures are scary because there is always the risk of injury due to falling.  So for now we will lower his bed (we have it on "stilts" so his lego table could fit underneath) and be on the lookout for signs of more seizures.  

HOW TO SPOT A SEIZURE:

If his pillow is wet in the morning that is a pretty good sign of seizures.

Put some sort of monitor in his room so we hear/see what is happening.

If, during the day, he zones out, we should pinch him.  If he responds, it's not a seizure.  If he does not react, it is an Absence Seizure.

OTHER TIDBITS OF INFO

"He CAN NOT be sleep deprived.  That is absolutely a trigger for seizures."

Therefore, Doctor's Orders state his bedtime must be no later than 7:30 on weeknights. 

He accepted that news better than I expected. 

MRI is yet to be scheduled. The team wants him admitted and have sedation with his cardiac anesthesiologist rather than just the quick sedation. (This is not a surprise to me, and I tried to tell the scheduler he needed that, but oh well. So the difference is he will have to spend the entire day there instead of the 2 hour special under IV sedation. 

In the meantime, Dr. Korol said call if we think he has had any seizures, but otherwise, given a clear MRI, we would check back in 6 months.  

Something tells me we will be seeing her much sooner than that.

This kid takes it all in stride. Just another thing. No big.