Whew! Lots to digest....

It's as if a huge weight was lifted off my shoulders when Dr Kaine walked into Ethan's room Wednesday morning. 

He did not know Ethan had been re-admitted on Saturday, or any of the issues, until he spoke to Dr Swanson on Monday. Being a holiday-he was not in the hospital or clinic. 

And I should have given him more credit than I did for knowing Ethan so well. He has no intention of sitting on the bald kid and watching and waiting to see how the medical management of drugs and O2 works out-and he never did. He has been formulating a plan for him since we knew how bad his valve was in October. He knows Ethan cannot tolerate pulmonary insufficiency for very long at all and thus wants to intervene quickly-while the meds and O2 are working, and well before we end up as bad as 2011 was with a BNP of 3400. 

So-the very tentative new plan: 

Ethan's pulmonary hypertension is something new for him. Though his pressures were high before his valve replacement last time-not this high.  So Dr Kaine wants to get him in the cath lab quick-like in the next 2-3 weeks. This cath would not only be diagnostic to get pressures and the usual, he would also make sure Ethan has no underlying issue we are missing causing the pulmonary hypertension. He will also measure the conduit from his last valve.  AND, the biggie; pre-stent the valve with a bare metal stent in preparation of having the Melody Valve placed. 

The pre-stenting helps decrease the incidence of the Melody Valve fracturing.  Without pre-stenting, the incidence rate of valve fracture is about 30% at 6 months. This means the valve could be leaking and causing huge problems 6 months after placement.   Not a risk to take with E, thus, pre-stent. 

Though Ethan is significantly too small for the Melody Valve, it's requirements are deceiving. The 30kg weight requirement is not necessarily for weight-it's for overall body size. The assumption is that if the child is at least 30kg, he has vessels large enough to accommodate the catheter size needed for transfemoral deployment of the valve.  This is where the true benefit of the Melody is-no open heart. Its put in through a vessel in the groin or neck. However, our skinny little bald guy is not 30kg, and getting a 23 French catheter in his groin or jugular is not going to happen. Dr K felt the largest he could get in would be a 10 French. 

I know you are asking how he plans to get that valve in there if he can't use the typical deployment method??  Well, so did I.  And since we all know Ethan is anything but typical, the method he plans to use is anything but also.   He will take Ethan to the cath lab, and with Dr O'Brien-the cardiothoracic surgeon, they will open a small area on his chest-medial sternotomy-and place the valve through the right ventricle into the pre-stented conduit. All with a beating heart. No bypass. No stopping the bald kids heart.  This is called a Hybrid version of the Melody Valve. 

Yes, they have to open his chest, but it would be a much smaller incision than for a surgery like his last two. The big bonus is NO BYPASS!!

Dr Kaine wasn't kidding when he said he'd been formulating a plan. 

Wowzie. 

I would be lying if I said I wasn't a little nervous about all of it, but completely impressed that we have the medical advances we have to do something like this. 

In the meantime, Dr K has to get Dr O'Brien on board for the Hybrid Melody Valve replacement.  He will be presenting him at conference to the whole team-Cardiologists, Surgeons, Anesthesiologists, Nurses, etc probably this Friday. If everyone is in agreement that we should proceed, we will get him on the cath schedule. 

One of the most important aspects to the cath is to measure Ethan's current conduit and make sure it is 21mm or less, as we can't use the Melody if it's greater than that.

Then once the cath with pre-stenting is done, the Hybrid Surgery will take place very quickly after. Like within 10-14 days quick. 

Yes, you are reading correctly and can add-that means this could all be done by mid-July. And Dr Kaine said he is hoping quicker than that. He isn't rushing, he just knows that the medical management of the congestive heart failure will only work so long for Ethan, and he wants to get him fixed before he deteriorates. Research has shown that early intervention in valve replacement has better outcomes than when the child is critically ill-like last time for E. 

From all the research I have done on this subject-failure, replacing valves, the Melody, etc., I knew I wanted something done quicker this time. I know we don't have time to spare with Ethan. And Dr Kaine put all my anxiety and fears that they were "sitting on him" for lack of a good plan, at ease with this plan.  And he made me feel a whole lot better when he confirmed that I knew last weekend he was in failure when no one believed me because I KNOW HIM BEST. And once he talked to Dr Swanson he knew also where we were headed and we had no time to jack around.  He didn't call me, because he felt this was a convo we needed to have in person. For that, I greatly appreciate this man. I needed to look at him when he told me his plan, to see in his eyes and his facial expressions if he believed this was the best route to pursue. And I believe it is. 

Dr Kaine is going to call me end of this week. He actually wants to see Ethan in clinic next week, but he is on service so he has to do some creative scheduling.  We will go over the entire process at that time, when Brian and I have had time to come up with any questions we may have and he can answer them fully-not with he and I standing outside the bald kids hospital room in a busy hallway at 7 am. 

  Would I really rather wish we weren't in this position less than two years later? Absolutely.  

But we are. And we have choices to make. And I feel like we have a great team giving us fabulous information helping aid in the choice making. 

And call it fate or whatever-but it has already been in the works for me to change my hours at work. I will be working a Saturday/Sunday/Monday DAYS position-well, into the evening on Monday. But one that puts me at home Tues-Friday, and every single night.  Which also means I will be off for all of the appointments, procedures and potential surgery we have coming up.  Things just seem to work out sometimes. I never would have believed that Dr Kaine was going to approach me with this aggressive a plan, and I am comforted in knowing he has no intention of giving up on our bald guy either. 

Guess the bald guys have to stick together, huh?