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.