First off-good news: Ethan has responded well to the medical management of drugs and oxygen. His pulmonary artery pressures are back down in the 30's, where they had been in the 50's two weeks ago.
His sats were 100 today on 2 liters of oxygen.
He smiled and laughed and even shook his head "No" at Dr Kaine when he mentioned surgery.
Bad news: Dr Kaine felt Ethan looked good, and his echo looked well enough today that we could continue medical management for months, maybe even a year. I know this doesn't sound like bad news, but we are right back to sitting, waiting for him to get worse before intervening.
And we would need to keep him healthy in the meantime. Which means no school, no traveling, and a basically miserable bald kid.
Dr Kaine has not yet presented Ethan's situation to the team, nor has he talked to the surgeons-Dr O'Brien or the new guy Dr Pastuszko, about the plan he discussed with me two weeks ago.
And since Ethan's surgeon Dr Lofland has retired and is gone now, he will be presenting this to two surgeons who don't even know E.
He also mentioned a possible problem with doing the hybrid surgery we discussed. During the cath before he could pre-stent, they would inflate a balloon in the vessel to make sure it doesn't compress Ethan's coronary arteries. If it does, then he's not even a candidate for the Melody valve at all.
If it could handle the stent and thus the valve, we wouldn't necessarily need to wait 10-14 days before putting the valve in, it could be done right then. Again, if the surgeon agreed, who doesn't even know about this potential surgery yet, because Dr Kaine hasn't even talked to him about it.
Argh!! All of these hinge on the surgeons, and the other Cardiologists conferring and agreeing that this is the best path down which to proceed with Ethan.
Which I was under the impression would have already been done by now.
Dr Kaine initially told me he wanted to get Ethan in the cath lab in 2-3 weeks. Tomorrow is two weeks post discharge. I was under the impression we would be leaving clinic today with a cath date in the next week. How had Dr Kaine planned to get that done having not even talked to the team??
Oh, wait, I'm guessing that really wasn't his plan at all. At least, from my standpoint it doesn't seem it was.
And the real issue....Ethan looked good today because we do have him on 2 liters, and yes his sats were 100, but if we drop him to 1.5, he drops to 88-89 in 10 minutes. And it's not even the sats that concern me, if he's below 2 liters, he begins working harder to breathe, becomes fussy and pants. He becomes uncomfortable, which means his heart is having to work harder.
He also has only been able to tolerate about half his daily feeds. He can get almost his whole normal morning feed down, but as we proceed to feed him during the day, he begins to retch, cough, hiccup, fuss and become diaphoretic.
And the real kicker? Ethan has lost 1 kg, or 2.2 lbs since discharge. And it's not all just fluid loss from the Lasix. It's because he's not getting all the calories he needs, and his heart is burning them faster than we can get them in him.
Only when we shared with Dr Kaine the issues with the oxygen and feeds, and that now was the time we would be looking at CHoP and Boston for any other available options, was when he decided he would present Ethan at conference either this Friday or next Tuesday.
When I asked if he felt replacing the valve would ultimately fix the problem, and how many times has he seen this scenario with Tet kids before, he answered cryptically with;
I wouldn't have believed it if you told me two years ago we would be here again with a failed valve after such a short time.
We know Ethan recovers well when his right heart isn't stressed BUT
he does have this underlying genetic issue that we aren't certain wont play into the outcome.
Aha. The real answer. The big fear that had been lurking in the back of my mind was affirmed.
Dr Kaine may not be able to get the team to buy off on a never-performed (at Mercy)hybrid surgery for a kiddo like Ethan.
Which is why he hasn't mentioned it to them I'm guessing.
Maybe he didn't mean it that way, but that's how I took it.
Having this wonderfully complex kid for the last nine years has afforded me the luxury of spotting the look of pity.
So I will give them until next Tuesday. But in the meantime, I will be on the phone with Boston and CHoP, cause I'm not waiting for months.
And now I'm mad at myself for not using these last two weeks to move forward with a second opinion, because I thought we had a great plan here.
Sitting. Waiting. Watching.
Not this time.
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