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January 26, 2006
Good News and Bad News
Wednesday had a very early start as we had to be in upper Manhattan at 7am at New York Presbyterian Hospital, which is the Cornell and Columbia University Hospital, as well as the Morgan Stanley Children's Hospital. This meant I didn't sleep, and PreZ got about 2-3 hours and was up again at about 5.30am.
Traffic was fine for most of the drive, until we hit a patch before the George Washington Bridge and Manhattan exits. It wasn't too bad, but we did end up about 15 minutes late. I don't think it mattered too much though, one of the nurses said later that there had been quite a few cancellations... flu and cold season wreaks havoc on scheduled procedures and surgeries because they can't/won't operate on kids that have or have just had a cold.
After meeting with a nurse, a cardiology fellow, the anaesthesiologist and a bunch of other sundry folk, and after signing a gazillion forms and running through the usual standard questions regarding allergies and such, we got Dash into his little hospital gown. I wish we'd had the camera with us for that, because it looked really funny... a little floor length gown covered in harlequin clowns.
After that we carried him into the "Cath Lab", where they got busy putting the little mask on and getting him ready for surgery, and so we left him to go have breakfast downstairs and wait in the waiting room until they were done. They said the procedure should take anywhere from 1.5 to 3 hours.
At around 10.30 I think one of the nurses came out to tell us that Dash's cardiologist was on the phone (he didn't do the procedure but referred us to the surgeon), so PreZ went to take that call. Moments later from another door the surgeon appeared to come talk to us. Well, to me anyway. We went to a parent conference room and collected PreZ who had finished with the call. The call basically outlined the same as what the surgeon was going to tell us (the surgeon and cardiologist had been on the phone together before they'd come to tell us).
The good news is that Dashiell came through the procedure just fine, no problems there.
The bad news is that they couldn't fix his PDA (Patent Ductus Arteriosus).
"The ductus arteriosus is a blood vessel that connects the aorta and the pulmonary artery in the fetus. That blood vessel is supposed to close when the baby is born. If it does not close, the congenital heart defect is called a patent ductus arteriosus."
Now, in most cases that valve is shaped like a funnel, and so when it's plugged up, the coil or device is easily and firmly nestled with little chance of dislodging. In Dashiell's case it's more shaped like a tunnel, because it's almost the same width on either end. The surgeon tried various kinds of coils and plug-like devices, but none of them worked, as they were all easily pulled through (they were still being held onto while he was testing this). Obviously this is something you want to avoid, because the last thing you need is a small coil or plug floating in his circulation and causing some kind of stroke or embolism.
So the bottom line is that the procedure was all for naught.
There is apparantly a plug out there that would fix the problem, but it's pending FDA approval and not availible in the US, of course. It's in use in pretty much every other country, but the FDA moves at glacial pace. The doctor was saying that they keep telling him that it should be approved any day now, but so far nothing. He told us we could call his secretary every so often to find out what the status is on the approval for the device.
Friday we have a follow-up with the regular cardiologist, where I expect we'll discuss the options. As far as I'm aware it's either wait for the device to be approved, or more invasive surgery. Seeing as his PDA hasn't presented him with any health problems other than potentially slower weight gain (but we don't even know if his slower weightgain is solely due to the Cri du Chat, or the PDA, or a combination of both) I'm personally inclined to wait a while for the less invasive procedure. But we'll see what happens.
By 11 they had wheeled him back into the recovery room. He looked like a little mummy all tightly swaddled up in white blankets. Another one of those moments where we wished we could have taken a photo.
He woke up slightly about half an hour or 45 minutes later, and I managed to feed him for a little bit, but it wasn't easy especially not with him swaddled in a large wad of blankets with about a dozen cords and tubes coming out at all ends. He also had a severe case of cottonmouth, so I think that made nursing harder or less pleasant for him. So after a while we put him back into the crib. The nurse was about to use an oral syringe to give him sugar water, before I kind of cut in and got PreZ to fetch the packet of breastmilk I'd expressed earlier and which they'd allowed us to store in the fridge there. Better something with more nutritional value than just empty sugar calories. He wouldn't really take the breastmilk from the bottle either, so I decided to use the oral syringe, which was a little messy at times, but it worked. Just having some moisture squirted into his parched mouth made him a lot happier and calmer.
Around this time PreZ had to leave, as he had a job interview scheduled down near Union Square. Life as they say still goes on.
After a while Dashiell found his thumb and didn't want to keep removing it so I could squirt some milk into his mouth, so I just kind of stuck the syringe in the corner of his mouth next to his thumb and squirted it in that way. A little improvisation, but it worked wonders... he sucked away at his thumb which now magically produced milk. Well, kind of. He was mostly asleep anyway, or at least he didn't want to open his eyes and regain full conciousness, so it worked like a charm.
I managed to feed him quite a bit of milk that way before he fell more fully asleep again. He was on a fluid drip so it wasn't really necessary for his hydration, just for his tummy not to feel so empty and his mouth less dry.
While he was asleep I read and at one point went downstairs to eat some lunch, and then more reading until he woke up again around 3pm to eat some more. This time I managed to breastfeed him more successfully, he wasn't quite as doped up and fed more easily. PreZ had called just before that to say he was on his way uptown again, and one of the nurses had said that by that time he'd be taken off all the equipment and we could take him home. That was another good thing, not needing to stay in the hospital overnight.
When PreZ arrived at 3.30pm one of the nurses started removing the IV, and the other monitors and things. At this point Dashiell woke up. He was very groggy but in a good mood otherwise. All the nurses cooed over him ("And if we all coo over him, then your baby is really cute, because we see babies all day long!"). There was a nurses station in the middle of the recovery room, so there were always a bunch of nurses present.
Then down to the valet parking area, and onwards home. Dash passed out in the car shortly after we left. We were home around 5 or so I think. At that point I was pretty delirious with sleep deprivation, as I'd only slept about 5-6 hours in the previous 2 days, which had now stretched into about 3 days. Dash woke up for a few minutes when we got home, but quickly settled back down when I took him to bed and started to feed him. Aside from the occasional feed he slept until around just before 1am, which got me a good couple of hours in too.
Earlier he was trying to do his Jumping Bean routine, and he's generally happy, so he seems to have come out of it all pretty well. No vomiting either which is good, as that's a potential side-effect from general anaesthesia.
Sadly though it was all for naught, and we're back where we started.
Posted on 07:24 AM to: Dashiell