Sunday, September 22, 2013

Back to normal. Ok, Rawley normal....

Yep, normal for us anyway. 

Home from Boston a week, and we're already in Children's ER with a Rawley. 
The 14 year old one. 
Parker that is. 
With a fractured collar bone.  
Our first football injury. 
3 games in. 
 Ahem. 



That long skinny bone should NOT have a crack in the middle of it. 
Normally-no big deal. But the ortho doc feels it may not heal right because the part from the break to the shoulder is actually twisted backwards and he may have a separation of his AC joint-where shoulder and clavicle meet.  X-ray and ortho appointment Friday to decide for sure. Parker is doing ok, in a sling, but in quite a bit of pain still. 
For my healthcare friends-as we were sitting in triage and the nurse asked him to rate his pain on a scale of 1-10; I was cringing, hoping he would not say "10"!!!  He didn't-I've obviously taught him well!


Oh, and did I mention we will also be at Mercy Wednesday for Parker?  He gets to have a CT because he may have a hernia....any of my fave Sedation RN's working?  Parker's freaked about the IV!!
Again. 
Ahem.  

Hailey is having her wisdom teeth pulled this Friday. 
My excuse to have a milkshake. 
For breakfast. 
Can't wait to post a pic of her chipmunk cheeks. 

The bald kid?  
Nothing short of amazing.  
Saw Dr Russell in PCC on Tuesday-love her. He had to show off and sit up on the edge of the exam table for her. All by himself. For like 20 minutes. She cried. And I know you've all seen this pic. But here it is again because all I think of when I see this is "he will never sit unassisted"


Never. Say. Never. 
Not to Ethan Rawley. 

Dr Russell gave her thumbs up and high fives to send the bald kid back to school!
And feeding therapy.
And pool therapy. 
*disclaimer-Ethan cannot get himself to a sitting position, but once placed there could balance and recover himself if he started to lean!  HUGE steps for the bald kid!!! 

Next it was Cardiology and Dr Kaine on Wednesday.




 And again, the bald kid had to show off-but not just sitting up.....
his echo looked awesome!!!!

His new Melody Valve is still seated nicely and working perfectly. 
His tricuspid valve leakage is down to mild. 
His left heart function has almost returned to *gasp* normal. 
And his right heart function is already improved. 
And his oxygen on room air?  96! 
Woo-freakin-hoo!

Dare I even type it?  I've been postponing this blog because I really can't believe it myself and didn't want to jinx us. 

Dr Kaine was happy for us. 
Surprised. 
But very, very happy!
We found out he made a personal phone call to a St Louis Children's Cardiologist; Dr David Balzer, about Ethan. When Dr K realized MO HealthNet was giving us a hard time about going to BCH, and were wanting us to go to St Louis first, he approached Dr Balzer about what he might offer for Ethan. Dr Balzer agreed with Dr Kaine that doing the Melody Valve via cath only would not be something he was willing to do either, so he wrote MO Health Net and recommended Boston also!  
Thanks Dr K!  We love the bald guys!  

Ethan does have to wear a holter monitor this week-a 24 hour EKG basically. Just to make sure that he's not having any funky heart rhythms that could be dangerous to him. We will hook him up Friday after school and send it back to Mercy next week. 


Before we left for Boston, I asked a very dear friend, photographer extraordinaire, all round amazing person, Brandi Wisdom, to take some family pics. Brandi knows me, and gets me. We haven't had a family pic of all 5 of us in forever, and if we went to Boston and something happened to our bald guy, I would want those pics. Need those pics. And she got them. As usual, with her creative eye and typical Brandi magic behind the lens. 
Not the greatest of the bald kid-but then again-his poor little heart was working so darn hard, I'm glad to have them to see the difference now for sure!  
These are my absolute favorites-and I will post more this week. 





Thank you my dear friend. Your pictures speak directly to my heart and are some of my most prized possessions. Moments in time frozen forever for me. Thank. You. 


And to end with a quick hysterical story...
I'm a Halloween decoration freak.  
My fave holiday. 
So, how could I pass up these awesome hands I found in the hospital gift shop today?  
I couldn't.  


So....I get home from work and am admiring these beauties-yes, I got 2 pair-

when Hailey says Brian is out front in his police car talking to another officer, also in a police car. 
As I walk out to the cars, carrying these hands, I actually rubbed one on the officer's arms with one of these hands, beaming with pride at my ghoulish new deco before I realize that 
neither of these cops are my husband. 

Yep, they thought I was crazy. Especially since they were in my neighborhood on a call of a suspicious person wandering around and here comes the crazy chick carrying two dismembered hands right up to the police cars.  Because who wouldn't assume that at least one of the police cars directly in front of your house wasn't your husband??
Hey, they all look alike in uniform. 
Kinda. 
Even better?  Hailey walks out and starts talking to them, even calling one of them Dad before she realizes it's not Brian!  
So-sorry North Patrol guys, I'm sure you think I'm a total freak now, but thanks for laughing with me and keeping my 'hood safe,

Especially from a crazy chick in scrubs wielding dismembered body parts calling you honey. 

Ahem. 
If it weren't for social media, and the ability to have proof positive, nobody would believe this shit. 

How could you?



Tuesday, September 10, 2013

Unbelievable miracle

We are happily home in KC with our bald guy. Ok, happily home with him, not happy with this KC weather. I most definitely miss the gorgeous Boston 80 degree highs during the day and 60's at night. Sleep with the windows open here?  Not this time of year. 
There?  Every night. One night we even had to close the window because it was too cold. 
And though we didn't officially run the Boston Marathon, we definitely walked all of 26.2 miles in our treks to and from CHB, and exploring the lovely city. 

Ethan is without a doubt a miracle. The power of prayer and the team of supporters he had behind him is immeasurable, other than in the fact we brought him home 6 days post-procedure. 
I have some very special people to thank-saving that for my next post, as this one is already going to be long enough. 
He has a pediatrician appointment next Monday, and a local Cardiology follow up next Wednesday, and we are anticipating the green light for him to return to school by the end of next week! 

Until every child is well
 
Children's Hospital of Boston's motto. 

And in this case, Ethan was one of those children. But, unfortunately not every child leaves there well. 
And though we rejoice in the fact that his team did something amazing, beyond amazing, miraculous, as I walked back into the waiting room after talking to Dr Porras about the cath and the valve, with the biggest smile on my face, and a huge relief off my shoulders, as much as I wanted to shout and jump and fist pump and high five everybody in there with our good results, I saw other families who weren't so fortunate. 
The month old baby on ECMO who wasn't doing well, and her young parents clinging to hope and each other. 
The family calling other family members telling them their daughter was not improving, and they were going back to surgery at 7am the next day. 
The newly transplanted little girl who had no family present because Mom and Dad both had to be at work to pay the bills. 
The sweet 14month old girl who had been bounced back from CICU to 8 East twice after a 12 hour surgery in July, and no thought of going home in the near future. 
The young boy who coded down the hall from us on Thursday.  And the parents that stood outside the door praying and hoping and trying to hold it together. 

Until every child is well

But not every child gets well, or gets fixed, or even gets to go home.  And it's not fair. And I struggle with my own guilt vs happiness because our bald guy was one of the success stories.  I know he deserves it, and Lord knows we all deserve a little luck in our corner of late, but so did all those other families.  

And to the Mom who was most instrumental in helping me admit what I already knew I needed to do in seeking a second opinion, my heart aches for her pain, as she celebrated her son's 8th birthday on Sunday, without him.   She has endured a pain no parent should go through, yet reached out and helped me in ways indescribable.
Breathe. 
You're not even there, and I'm sure you're already thinking about what your other kids will eat while you are gone. 
You don't need anyone's approval. 
I would pray for strength for you, but you don't need it. You would move mountains for your boy. 

I know, because I was you. 

The fact that this Mom puts me in the same category with her is humbling.  
I don't think of myself as strong. Because the times I'm fighting the hardest for something seems to be when I feel the most beaten. 
I guess that is where my strength lies. And my stubbornness. 
I only wish I knew this Mother under better circumstances. And had gotten to know her sweet boy who loved trains. It is a blessing to know her and to have had her in our bald guy's corner the whole time. 
Your sweet boy will live on forever in the lives you both have touched, namely ours. 

Bridget, I hope you don't mind my sharing the story of your precious Jack;
www.jacksheart.com
And if any of you readers have a few extra dollars lying around you would like to go to a very, very special cause, consider donating to Jack's Heart Fund. 
The little fund that could 


I was told to skip all the medical mumbo-jumbo and dumb it down a little, so here goes;

Ethan got a huge valve-think garden hose size in comparison to his stick figure arms and legs-put in through his groin by catheter. I will post his post-cath chest X-ray at the end of this post, so you can see his new hardware. 
He is the smallest child-by small we mean weight-to ever have had this done by cath. Ever.  
FDA requirements state 30kg. Ethan is 17kg. 
We had to sign a form about the valve being used "off label" and it's risks in someone his size. 
And insurance may not pay for it being utilized off label. 
But that was a risk we were willing to take, especially after the team in Boston told us this was Ethan's only chance, and their only option. 
We knew we had to get that valve in. 
Ethan's heart, though medically managed, had become so dysfunctional, and his right heart so enlarged, that it had pushed his pulmonary artery-and the conduit from his previous PV replacement so anterior-or so close to his chest wall-they felt it would have been destroyed just trying to open his chest for an open heart, and he wouldn't have done well with bypass. CPB or cardiopulmonary bypass is when the heart is stopped and it's function of circulating blood to the lungs and other organs is performed by the bypass machine.  Yep-a still, not beating heart. 
Once we had all the necessary information, we didn't feel a surgical procedure would have a positive outcome for Ethan. 
We did what we had to do to ensure a better outcome, thus better quality of life for him. 

And that they did. Home with no oxygen. Pinker feet. Less extremity discoloration. Handling this terrible Midwest heat and humidity just fine. And did I mention the increased energy?  

This valve could very well begin leaking, however, the benefit of having a Melody means just going in with cath and swapping out the leaky one for a new one. Viola! 
And still no open heart surgery. 

What I loved most about CHB was that not once, NEVER one time did they look at Ethan as a Chromosomal Anomaly 18q- kid.   
I didn't have to convince them his heart was failing. 
I never got condescending looks and snide comments from the team who viewed me as a crazy Mom. 
I never heard " well....we don't know why, but.....Ethan does have this chromosomal anomaly..."
They asked our opinion on resuming feeds, how much and how soon. 
They asked about his baseline breathing, heart rate, demeanor, etc. 
They brought me out into the hallway for rounds with the surgeon and doctors; the team not standing just far enough away from the door and speaking quietly so I wouldn't hear. 
Never once did they assume to know my boy better than me. 
I was as much a part of Ethan's medical team as his Cardiologist. And I appreciate the respect, especially coming from some of the smartest, sharpest doctors in the country. 
I expected arrogance, and they had every right to be with what they accomplish out there daily.  
But I got genuine care and concern for my little bald guy. 

Until every child is well

He went to Boston just a little boy with a broken heart. 
And came back with a fixed one. 




Ethan's new valve-the mesh looking thing!  Yep-it's that big!








Thursday, September 5, 2013

A little curve ball from the bald kid...

Like any of you really thought we were getting through this that easy?

It's all ok-just bought us another night or two here. We were looking at discharge to the Yawkey house today, and headed back to KC on Monday. But Ethan heard discharge, home and Kansas City and I'm sure thought he hadn't quite kept everyone on their toes enough here yet. 

He spiked a fever last night.

To most of you that doesn't sound like a big deal. To a heart kiddo post procedure or surgery it can, unfortunately, turn into a very big deal. 
Does he have an infection?

Then he started having trouble breathing. 

His sats were staying in the high 90's on room air-but he was wheezy, stridorous, retracting and had an increased work of breathing. He was also all mouth breathing and sounded terrible. 

His feet became purple and cold again. 

Then he started throwing PVC's or premature ventricular contractions-a little early beat before his normal heart beat.
Like 42 a minute. 

Then he started having a bigeminy rhythm-or a PVC following every atrial beat. 

Then he started having missed heart beats-where his heart was just so confused it didn't know when to beat. 

Then the multiform PVC's showed up followed by VT-ventricular tachycardia-which is a pulse rate of more than 100 beats per minute with at least 3 irregular heartbeats in a row. 

That will bring a whole lotta nursing staff to your room!  

And to be perfectly honest-it kinda made me nervous all of this happening together at one time. 
Was he just having post intubation inflammation? 
Had he been exposed to something viral that manifested itself after his body was stressed out?
Is the valve still working perfectly??
Does he still need a pacemaker??

So the nurses called the resident and she came up to see the drama. 

And Ethan laughed at her. 

And if 4 nurses hadn't been stalking his rhythm and printed strip after strip after strip of these crazy heart rhythms-I'm sure she would have thought us all to be crazy!

So Ethan got a dose of Tylenol-2 total overnight. 
Pulmicort breathing treatment. 
And they added a Xopenex breathing treatment-NOT albuterol due to the cardiac side effects of it. 
An extra dose of Lasix. 
And drew labs. 

His potassium(K) came back a little low, so they hooked him up to a dose of it to run into his tummy for an hour. 
The low potassium can sometimes be the reason for the heart arrhythmia. And the EP team was hoping that to be the case, if his K level hadn't come back normal at 0630 and him still be doing this funky stuff. 

The Xopenex helped his breathing overnight enough to help him sleep-somewhat. Though I'm not surprised he didn't exactly want to crash. He thought he was coming here for fun and he got woke up after 26 hours of sedation and paralytic with a tube in his throat and a hole in his groin a half inch wide with a pressure bandage on it, an IV in his right foot, left hand and an EJ-external jugular-or IV in his neck, and soft restrained to the bed. 

I don't blame him being pissy at all. 
Or being difficult just to show us how pissy he was! 

Better news as the day has progressed. 

Chest X-ray clear-no pneumonia, no aspiration, no consolidation or even atelectasis. And NO pulmonary congestion! 

Fever has NOT returned. 

Still sounds junky so switching to Xopenex and Flovent by inhaler tonight to see if he does ok with those instead of the nebulized meds. 

Started chest PT-where they beat on his back with a pediatric face mask and instead of coughing he laughs. 

And get him upright to get that gunk out. We took him for a walk and he had a couple of really good coughs and sounds a little better now. 

He is having such a hard time breathing, he won't even put his hand in his mouth because he knows he can't breathe with it there!  And for those of you who know how much he likes to put his right hand in his mouth-you get the severity. 

Good news?  No bradycardia (low heart rates) in the 30's!  Lowest I've seen him today is 59, but otherwise in the 80's, or NORMAL!  

For now, all is holding steady. Which is still great news. We are NOT having an open heart surgery and we are leaps and bounds ahead of where EVERYONE thought we would be at this point. 

And as a very wise fellow heart mom messaged me today in my panic-
Remember, this is not a sprint, it's a marathon. 

So true BCR, so true, and thanks for reminding me to chill and take it one day at a time. 

Meanwhile, Dr Marx thought Ethan was acting out in protest of the leg warmers I had on him to keep his skinny little legs warm. He called it "cruel and unusual punishment". 
His Daddy and Aunt Katie agreed. 

I, personally, think they add to his cuteness, uniqueness and character. 

That and I'm his Mom. 
And I won the leg warmer argument.  



What do you think?


And I so love this happy face!

And his new t-shirt. 
Couldn't have said it better myself-found it in the gift shop on clearance!  


Now, just pray for no more PVC's or any funky rhythms, breathing to get better and some movement in the bottom half, if ya know what I mean! 

Wednesday, September 4, 2013

Team Ethan takes the trophy!!

I haven't fully updated what they found and were able to do yesterday to the the little bald guy. 
To be perfectly honest, it hasn't completely sunk in yet, and I'm tentatively scheduling flights for he and I back home this weekend-still kind of waiting for E to throw us a curve ball. 

So, long, long, long story as short as possible;
Ethan was intubated about 9:30 am yesterday and headed to MRI. 
The MRI confirmed free regurgitation of the PV (pulmonary valve)- greater than 50%
Right and left heart dysfunction
Mild-moderate regurgitation of the TV (tricuspid valve)- 13%
And a dyssynchrony of the ventricular septum 
Dyssynchrony being that the different parts of E's heart don't function in sync with one another-thus being the thought process behind why he runs such a low heart rate at times-bradycardia. 
*All of these findings we knew-but had to confirm. 

The best thing the MRI revealed to us is that though his ventricular septum is indeed dyssynchronous, 
HOWEVER not enough so that bi-ventricular pacing would be needed. 
Score 1 Team Ethan!

The MRI also showed that when the contrast Gadolinium was injected it showed he has no areas of infarction on his septum!!
Score 2 for Team Ethan!

All in all-GREAT news from the MRI overall. 

On to the echo, still intubated and doing great. The bald kid loves his sedation! 

Echo findings confirmed the findings of the MRI, and kind of seems redundant, but Dr Marx wanted a good 3D one to see where the previous conduit was at, and since he was perfectly still-get it pre-cath. 

On to the Cath Lab with Dr Porras and Dr Bentham at bedside, and Dr Marx consulting findings with Drs Baird, Lock and Marshall. 
No trouble gaining access for the diagnostic part of the cath in Ethan's right groin. 
Measured pressures-all within normal limits by Ethan standards. 
Then they measured the conduit where the previous-now free flowing-valve should have been. 
It was within the measurement constraints to support a Melody Valve!
Score 3 for Team Ethan!
Now to balloon the conduit to the size it would be with the Melody in place..and it held!
Score 4!
I got a phone call from Nurse Kate at this point telling me there was still much discussion about attempting to place the Melody Valve or not. 
I was figuring not, and she agreed.  
Then to inject the coronary arteries to make sure that if the Melody were in place, those would not be obstructed, thus blocking off blood flow to the rest of his heart. And they found that it did NOT cause coronary artery compression, in fact they discovered Ethan had an anomalous coronary artery that runs behind his aorta instead of in front of it anyway-so no chance for compression!
Score 5!
Then they injected the peripheral pulmonary vessels and found he has NO stenosis or obstructions that could have been causing the PV to fail simply from being backed up. 
Score 6!
Then they placed a stent in the conduit to support the Melody Valve. 
I got another phone call from Nurse Kate sounding a little more optimistic that the Melody valve attempt was looking more likely but much discussion was taking place. 
Score 7!
Then the cowboys took the reins and began dilating to get the 22 French sheath in that is required to deploy the Melody Valve. 

And they got it in. 

It seated nicely in the stent. 

It began working fabulously immediately!

TOUCHDOWN!!

Then the EP (electrophysiology) eval took place and they found that Ethan has NO accessory electrical pathways that could be dangerous to him. 
EXTRA POINT!

Much debate was then made about whether to wake him up after the required down time for the cath, or keep him sedated and intubated. Much to our agreement, he moved to the CVICU and was kept sedated and intubated all night. If he awoke and started kicking around, in true Ethan fashion, there would have been no way but surgery to stop the bleeding-thus, keep the little man down. 

He had NO strange rhythms, no Brady spells lower than the 40's, no pressure issues and no bleeding from the HUGE (per Dr Porras) hole they put in his groin.  

They also wanted to keep him intubated for an echo this morning to ensure everything still looked good and they didn't need to take him to the operating room today. 

And lo and behold....everything looked great overnight and on today's chest X-ray and echo!
He got extubated about 11:30 and he's holding awesome on 1.5 liter of oxygen by nasal cannula.  They will keep the oxygen on him until all the sedation is out of his system. 

In talking to the surgeon and cards today, they felt Ethan could not, and would not tolerate an open heart/bypass surgery. Once they realized that, they felt their only option to help him, and Ethan's only option for long term survival, was getting the Melody Valve in. 

So. They. Did.

Kind of scary to think we were supposed to have an open heart in KC at the end of this month....

Nobody could have hoped for a better-though completely unexpected-outcome! 
Even for a place like CHB, every cardiologist we spoke with confirmed he was "unique, tricky, complicated and challenging". 

Of course he is....

He's Ethan Rawley. 

Snuck in a pic post extubation:



Look at those pink, not mottled, warm feet!



Going to the floor now-will update with discharge and post-op plans later tonight!!

Thanks for everyone sending your good wishes and prayers to our special boy!



Monday, September 2, 2013

Proud.

I almost forgot to share that Parker dressed out for Staley's first varsity football game of the season on Friday!   I almost cried when he told us before I left, knowing I was going to miss it. We are so proud of him and all the hard work he has put in this summer with football. Also that he has straight A's right now.  I know most of you are thinking but it is only the 3rd week of school....
Let's just say Parker doesn't have a great track record with grades and follow through. I think he's found his niche, his place where he fits in, and I'm beaming with pride. 
He's number 47. 

Look at those smiles. Love them!! 



And a huge thanks to everyone who text me for his jersey number so they could watch for him on the televised game!  
His games this week are Tuesday at St Pius-starting at 5pm, and Wednesday at Staley at 5pm. If anything changes I will update. Thanks to those of you offering to attend and cheer him on in my absence.  Please be obnoxiously proud and loud so he feels like I'm really there! 

Hailey and Parker got to go to Hailey's Grandpa Chuck Ladner Memorial Golf Tournament on Saturday and spend the night at the farm with her Ladner family. Thanks to my BIL Trevor for taking them bright and early and spending the day in the heat. Trevor, my nephews Taylor and Kellen, and  Parker played in the tourney, and Kellen won a golf bag and balls!  Now all he needs is clubs for next year!  Hailey and Parker are keeping busy, but are very anxious about their buddy. They are used to being right with us along every step of the way with Ethan's previous hospitalizations and surgeries. We are very open and honest with them, and they get how important this trip and what happens here is for E.  But it doesn't make it any easier on a 16 and 14 year old.  They have given up a lot over the last nine years and often taken a back seat to their brother's needs, though you will never hear them complain about it. I am so proud of how they are dealing with all of this, just wish they could be here with us too. I am already planning a visit back here next year, with all of us, but for FUN!!

Today we are doing laundry, rearranging our suite (ha ha for those fellow Heart famiy Yawkey residents who know what I'm talking about!). We also need to venture out to find a hat for my nephew. 

My sister Kim leaves early tomorrow and Brian and my other sister Kate arrive around 1pm. It will be a long, long day tomorrow waiting for all the answers, so a post may come late tomorrow night. Brian will be in the air when I receive some of the results, so I won't share on here until he knows the plan. 

Please keep the bald kid in your thoughts and prayers as he goes under tomorrow. And for patience and strength for me as I get comfortable with the waiting room chairs. 

Sunday, September 1, 2013

Day one appointments

Friday was a long, informational day. 
Sorry if I bore you. 

It started at 0730 with a check-in at admitting for insurance, address, basic info. The admitting guy asked where we were from and for my home and cell number then follows up with "which number would you like to be contacted on while you are here?"  Well asshat, since I just told you my HOME number was in KCMO, and we are currently in Boston-let's say we just list my cell as the primary contact. 

On to Cardiology Pre-op for vitals-height, weight, blood pressure, oxygen sats (100 on room air BTW!!)
med list, allergy verification. 

Radiology was next-and the tech was excellent with Ethan and asked about me holding him and when I told him I was an X-ray tech myself-and I am happy to hold him he was relieved and even gave me a 'sneak peek' at his films. The bald kid's heart is pretty huge right now. With a little pulmonary edema. I'm not surprised though, I noticed his feet were pretty puffy and he's had an increase in secretions since we flew. I just gave him an extra dose of Lasix yesterday. 

Then the fun part-lab. Alas-only two sticks. But after the second one Ethan threw one heck of a temper tantrum on the table-kicking and screaming and clenching his fists ands gritting his teeth. He finally calmed down after about 2 minutes. Bless Ms Judy's heart who had to stick him-she just let him get it all out and then gave him a sweet little squeeze. 

Then we met with Dr James (Jamie) Bentham. He is the cardiology fellow who will be bedside with Dr Diego Porras for Ethan's cath on Tuesday. I love him. He's English for one, and listening to him talk is entrancing. Called me Mummy more than once. He had read up on E, but now wanted my story-from the beginning to where we are now. He listened to me tell our journey and jotted stuff down, interjecting occasionally with a question or comment. Once that was done he shared with us what the Interventional Team's plan was when we got to the cath lab.  Ethan is going to be intubated with a breathing tube for a 2 hour MRI prior to going to the cath lab. He will remain intubated until all his procedures are done on Tuesday. 
Once access is gained, whether by groin area or neck area, they would do basic stuff-check pressures, check tricuspid valve leakage, etc.
Next they have to measure the conduit where his failed pulmonary valve currently is. 
IF it is less than 21mm, the next step is to ballon the pulmonary artery and make sure it does not compress any of his coronary arteries. 
Then he will inject contrast dye and just check out all the vessels in his heart. If Ethan has any peripheral pulmonary stenosis (narrowed or obstructed vessels getting the blood flow to the lungs) then they will stent those right then. 
As you can tell, one thing depends on the other, etc etc. Dr Bentham likened it to a football game and calling audibles on each play depending on what's in front of them. 
If all goes well, Ethan will get a new Melody Pulmonary valve in the cath lab-never going on by-pass!!
But....there's always one of those, right?
But, IF the tricuspid valve leakage is too great, it would need to be fixed by open heart. 
IF the conduit is 21.1 mm or greater he will have to have a new pulmonary valve (PV) placed by open heart. 
IF the coronary arteries are compressed by ballooning the pulmonary artery, he cannot have the Melody valve and would have to have a new PV placed by open heart. 
Whew. Lots of ifs. 
He said Ethan is a very interesting and complex little guy and that there will be multiple physicians involved in his cath. Dr Audrey Marshall-the Chief of Invasive Cardiology,  Dr James Lock-the Cardiologist-In Chief and Chairman of the Dept of Cardiology and Dr Pedro del Nido-Chief of Cardiac Surgery would all be present and weighing in on the findings. 

That's just the info we got from ONE Cardiologist!!

Next we met Dr Gerald Marx who will be Ethan's primary cardiologist while we are here. Lots of info here. Even if the pulmonary valve can be placed in the cath lab, his concern is that Ethan's heart will need pacing for his bradycardia and his dyskinetic septum. He also feels he will need bi-ventricular pacing, where pacer lines are placed in both sides of the heart, making it work more efficiently with the squeeze and pump action of both sides. I asked about his septum and if we find that from the MRI it is too ischemic (dead) what the next step is. His answer was that they would do everything possible to optimize his heart thus putting less stress on the septum to work in conjunction with the ventricles. They would make sure his pulmonary valve had NO regurgitation, his tricuspid valve had no regurg, and he had no stenosis-or narrowing anywhere.  But if it is too damaged, that is all they can do. There is no fix for it that Ethan qualifies for.  But again, we won't know any of this until after the MRI and cath. 
Audible.

He also talked about how they had never seen a kid before like Ethan who had a BNP as high as it was in 2011 (3535, where under 100 is normal) and only have right heart valve failure. Almost always it results in right and left heart failure and that replacing his PV in 2011 would never have fixed the whole problem.  He admitted Ethan is unlike any child they have ever seen, and lots of decisions will be made on the fly as we find out more and more info.  Now, when someplace like CHB tells you this about your child, I will have to admit, it kind of gave me goosebumps.  The facility just ranked #1 in Pediatric Cardiac Care by US News and World Report for 2013-2014 has never seen a kiddo like the bald kid??
Just confirms we are in the right place. 

Dr Marx left me with his card and told me he was the on-call all weekend so if we needed anything at all to call and have him paged. In the meantime, he told us to enjoy our 3 day weekend and take a Duck Tour, enjoy the weather, and eat some seafood!  Really like him too!  

We then met with the EP (electrophysiology) Cardiologist who talked to us about Ethan's history of Wolf-Parkinson-White. Though E doesn't have SVT episodes anymore, he could still have an accessory electrical pathway that could, at some point, be dangerous to him. So during the cath they will do an EP evaluation where they will try to induce an episode of supra ventricular tachycardia (SVT)  or rapid heart rate and see what happens. If they find one, they will deal with it accordingly. 
Audible. This cardiologist was a first year fellow and also very nice. He has even been to KC and said he ate BBQ at the place in the gas station?? He phrased it like a question like we wouldn't  know Oklahoma Joes!!  His wife is from a small town in Missouri-he's originally from Philly and we chatted about how spread out KC is. 

Last but not least we met with Paul the Cardiac NP who briefed us on arrival times, NPO status, meds he can have, meds to stop, any previous anesthesia issues, etc. I was so pleased as he did his physical exam on Ethan that he noted he had his right hand in his mouth the whole time and was listening to music on his shuffle. He typed in the notes for them to try to do IV's etc in the left so he can still self soothe with his right hand if at all possible. And that he has his own tunes and just who he listens too!! 

After 6 hours at CHB, we were done, we took a quick tour of the cath area and then we headed to get some food and fresh air. 
I am so impressed with this place and these doctors, in my heart I know we have come to the right place to get our bald guy fixed!  

Ethan and I literally stayed in bed until 3pm today-we both needed it desperately, and I got some extra snuggle time in before we hand him off Tuesday. Then we went exploring and found a great pizza place called Otto's where we had some fantastic pizza and a glass of wine. It's a good thing it's nice enough to walk everywhere here-and push a kid in a stroller-I get a chance to burn off those calories!!!

Tomorrow we are going to try to ride the T. (Their public train) into the city and walk The Freedom Trail, see Paul Revere's house and the North Church where he hung the lanterns exclaiming "the British are coming".  Lots of history in this town, can't wait to soak it all in. 

Did I mention we walked to Fenway Friday as they were preparing for the Red Sox game?  
Amazing.