a good play with an awful hand
In essence, what Dr. A was doing for our son today was making a good play when being dealt an awful hand.Those were actually his words. Not mine. I'd like to give credit where credit is due. And, as you'll find, Dr. A deserves lots of credit after today. Stellan made it through his procedure and is not extubated yet. They want to keep him on the ventilator for a while since this morning was so complicated for his little body. We are in the recovery room right now. He is finishing off a blood transfusion they started earlier, and we'll head back to the CICU (Cardiac Intensive Care Unit) shortly. We will likely be back on the regular cardiac floor by tomorrow. Of all the scenarios that Dr. A could possibly have found once he was in Stellan's heart, unfortunately the location of Stellan's accessory pathway was in the least desirable and most complicated position possible. It was a long and involved procedure, but they didn't have to open up his chest at all because they were able to avoid the need for a pacemaker (at this point, signs are pointing to him possibly needing one in the future, perhaps when he is old enough to get one without requiring open heart surgery). Today the cardiologists accessed Stellan's heart through his neck and three openings in his groin. One unexpected thing that was discovered during surgery today was that Stellan has Patent Foramen Ovale. The hole, present during fetal development, that connects the atria through the septum, which usually closes at or shortly after birth, is still open in Stellan's heart. I have no idea yet about the ramifications of that hole still being open, but I don't think it's a big deal. It worked out great today, in fact, as Dr. A didn't have to puncture Stellan's septum! He just threaded his instruments right through Stellan's Patent Foramen Ovale to gain access to the left side of his heart! Seriously, modern medicine is amazing.Dr. A was able to indeed locate Stellan's accessory pathway, a parahisian mid septal pathway that lay right on Stellan's AV node. It was so close to Stellan's normal conduction pathway as to almost be commingled. It was this unfortunate placement of Stellan's extra pathway that made today's procedure so complicated and risky. The good news is Stellan's his pathway was nowhere near his coronary artery, so that was not damaged. The bad news is that the AV node is necessary for the heart to beat properly, and Stellan's AV node was damaged today. It is through the AV node that normal conduction flows. Damage to the AV node is what causes heart block (When the upper and lower parts of the heart do not electrically communicate with each other, therefore beating autonomously instead of in synchrony like a normal heart beat. Heart block often necessitates the implantation of an artificial pacemaker.). The doctors found it very difficult, impossible it now seems, to get rid of Stellan's mid septal pathway without damaging his AV node. The long and short of it is that Dr. A danced an impressively fine line today, wanting to destroy Stellan's extra electrical pathway as much as he could so we could get rid of his capacity for SVT, while not wanting to utterly destroy Stellan's AV node and cause complete heart block, thus possibly requiring open heart surgery and a pacemaker. The result, we all feel, was the best play possible, given the unfortunate hand we were dealt (as regards the location of Stellan's accessory pathway). In the process of ablating the pathway (using cryo ablation instead of radio frequency ablation, a change Dr. A made mid-stream after realizing how risky it would be to actually use radio frequency), Stellan's AV node was damaged. He was left with (what seems now to be Complete) Right Bundle Block. This means that his entire right ventricle no longer receives electrical impulse as far as when to beat. Instead of beating in harmony with the atria, it's doing it's own ineffective thing. The great news is that Stellan did not end up with Complete Heart Block on both sides! His left ventricle (which could easily be argued to be more important than the right) is sill functioning properly, receiving the correct impulse from the atria. We are so very thankful for that.Accepting that Stellan now has Complete Right Bundle Block is the price we must be willing to pay as a trade-off for Stellan's accessory pathway being probably completely destroyed.As soon as Dr. A saw that the AV node was being damaged and heart block was being caused, he stopped the ablation process immediately. He did try to go in again later and just see if he could ablate a teeny, tiny bit more, but as soon as the catheter even got near the AV node, before he even began ablating at all, more heart block started to appear so he figured that was God's way of saying enough is enough. He didn't push things any further and estimates that the procedure, from that standpoint, was about 65% effective. Mentioning those odds were considered a "failure" in this field, he reminded me that he is confident this was the best outcome we could have hoped for, considering Stellan's pathway was on his AV node.If Stellan's SVT does come back (about a 35% chance that it will), there will be only two options: Try to find a regimen of anti arrhythmic drugs to hold Stellan out of SVT until he is old enough to have another ablation (and a pacemaker...see next paragraph), or to go ahead and do another ablation (and pacemaker, as the AV node will have to be destroyed) now.There is no other option for ablation that does not include a pacemaker, however. If Dr. A has to go back in Stellan's heart to ablate the pathway if it comes back, there is no more room to ablate it a little without killing the AV node. Another ablation will mean a pacemaker, which will mean open heart surgery if Stellan is still young. If he is older and big enough, though, he could get another ablation and pacemaker much less invasively. There is even the chance that once Stellan is about 20 kilos (at about age 4), that his accessory pathway, if it is not entirely gone already, might move away from the AV node a bit as Stellan grows, making a complete ablation of that pathway without destroying the rest of the AV node a minute possibility.Because Dr. A was not able to ablate as aggressively as he would have optimally liked, we will stay here for a few more days at least. Stellan will have an esophageal study on Thursday to try to map Stellan's heart again and to try to induce SVT. Depending on what happens when Dr. A tries to induce SVT, we will determine the plan from here on out. If Stellan's SVT does not come back, we will be able to go home with Stellan on no drugs. As I wrap up this post, Stellan is now off the ventilator and able to eat. We are in the CICU and will be through the night. I nursed Stellan and he fell back asleep. His blood transfusion is done, but some of his labs are still really low, so he'll be getting some other stuff (not sure what at this point..bicarbs or something and other thigns). He'll also be given a diuretic to help him get rid of the fluid that is in his lungs and his tissues (that built up when his heart was in such high SVT since yesterday afternoon). Thank you so much for your prayers and concerns. Even more updates and photos of our sweet boy to come soon!