Rambo's Rampages...

This morning as we were getting ready to go to the hospital and meet with the surgeon I realized that I was not at all ready for today. I wasn't ready to see Rambo looking sick or abused. I wasn't ready to see him all cut up again. I wasn't ready for anything. Nonetheless, today was here and his surgery was happening whether I was ready or not. We sit down with the same surgeon who has worked on Rambo before and you can tell he'd not pleased he has to do this one. He tells us straightforwardly that Rambo has a 50/50 chance at surviving the surgery. And if he does survive he will almost definitely be on ECMO - a heart lung bypass machine. I have seen this machine on several children in the PICU and hoped never to see my child on one. You have to be completely sedated and paralyzed and each day you are on it is a day closer to not getting well at all. I had a feeling that this was coming so after he told us that I tried to prepare myself for it but to no avail. I just c...

Tomorrow is the big day - for the third time. (I told you it was a crap shoot.) Little man will be getting a baboon's heart. I made you wonder, didn't I? No, he won't be receiving a primates organ but he will most likely be getting an artificial valve. The first step in converting him inwardly to all mechanical parts will be complete. After the valve, the rest of the heart. Then kidneys, liver, lungs - hook him up to hot water and we'll have the first steampunk baby. Be jealous. It's been determined that the change in his heart functionality was not caused by infection but rather just the repairs giving up. He apparently did not have the best tissue to begin with, which I think would have been nice to know the first time around, but whatever. I suppose the outcome wouldn't be any different. The exact time of surgery is not known because they just have to fit him in where they can. But they assure us they will fit him in. He's had no more seizure like a...

Apparently Rambo feels the need to live up to his name. Maybe that wasn't the smartest move on my part. But whatever the case, he is going to be having his third heart surgery on Monday. I keep whispering in his ear that this wasn't the plan but I don't think he's listening.  The good news is that his heart rate has slowed down and he is not working too hard to breathe. At least not while he's sleeping, which is what he's doing most of the time since they put him back on the narcotics. I'm sure he's having fun riding on pink elephants again. Somebody better be having fun because I can assure you that I am not.  Today we will be going back up to the PICU. My love/hate relationship with them can commence once again. I'm not sure who is looking less forward to our return: us or them. :) In other news, I ate at Baja Fresh for the first time today in weeks. It was still too soon.  

And by 'neighborhood' I mean PICU. Talk about chaos. Wonderful wonderful chaos. I miss that place. But when I first walked in I was totally intimidated. And that was on an 'empty' day in the unit.  It's a weird sight to see your tiny baby on an adult size bed. And weirder still when that entire bed is covered in equipment just for him. As well as his body being all geared up with tubes and wires and barely an inch to spare. It's amazing what can happen to someone in 6 hours. Our sweet little Rambo had become the bionic baby.  At this point in my head I'm pretty much just hearing static and nothing. I was finding it hard to even form a sentence that was worth anything. (I know what you're thinking about the two prior sentences, and yes, I know what I just said. And yes, I mean more than usual.) I'm used to having a 2 week old at home: watching him sleep in his bouncer, patting his back when he's crying, picking him up, feeding him etc. No...

You know you're in for a real ride when you get a call from the doctor (on Christmas Day) saying they had to reintubate your child. SECOND emergency intubation - check. I bet you're starting to wonder how many times this poor child has been intubated and extubated?? Well, today marks try number 9 without the breathing tube. 9. Seriously. I could give you a play by play account for the 7 tries in between but I won't. Let's just say Ben could intubate or extubate anybody any day of the week now. But I'm getting ahead of myself. Back to the NICU on Christmas Day: After many days of being baffled by a baby the doctors finally all agreed that his issues were being caused because of his heart. Duh. Rambo showed really early on that he was not the typical child with this defect. He wasn't eating and when he was, he wasn't keeping anything down. He was constantly breathing fast, like really fast: 110 bpm was average. And he couldn't seem to do the breathing ...