Sorry it took a bit to update. It was just too much to type out via my phone. Posting from laptop in cafeteria now. And didn't want to step out from sitting with Riley to do it sooner.
Ok. The surgery went well. Riley did very well throughout it overall. He did have to have a blood transfusion during surgery, and his blood sugars were in the 300's. Thats not a great thing. Just now before we left his room, she checked his sugar again and it was 389. YIKES. So they will be doing something about that. Not sure what yet since that was just prior to shift change. We'll find out when we go back at 7:30. The nurse changed his dressing also just before we had to step out and his incision is along the same line as the one before, just above his belly button and about 3-4 inches long. He DOES still have a stoma, a different one, and that is at the far right side of his incision, more on that in a minute.
The numbers from surgery:
*The surgeon removed 15cm's of small intestine. This leaves Riley with approx 50-60 cm's left. So that is good.
*repaired 3 holes in the small intestine. these are spots where the infected intestine healed onto intestine next to it. when they straighten it out, it pulls apart and makes holes. Fixed those.
*3 anastamoses (i am SURE i spelled that wrong). these are connections basically. Like reconnecting his previous ostomy...that is an anastamosis. SO they reconnected his previous ostomy, that is 1 of the 3, then removed 2 additional areas, that makes the other 2.
*they removed his ENTIRE right colon. The colon makes a kind of an upside down "U" shape. They took out his entire right side of the "U", this includes the area where his appendix is. The transverse colon...the part that runs from the left side of the U to the right side of teh U, it looks ok he said. The left side (this is the side that connects to your rectum), it has some bad spots. they are still in there. This is why there is a stoma still. It's now at the very end of his small intestine. It took SO long to do all the work they did, that they couldn't continue on and repair the rest of his large intestine this surgery. so that is why there is an ostomy. To divert stool from going through the still bad portion of large intestine. So Riley will still have to have another surgery in the somewhat near future, 6weeks or more from now. BUT, he will be able to come home prior to that one the surgeon said. They will go back in, sometime after 6 weeks (could be months, no rush for this surgery) and repair this ostomy and then fix what needs to be fixed in remaining large intestine. The surgeon said he MAY lose ALL of his large intestine...but that you can live without that. THe large intestine doesn't help with absorption of nutrients, just removes the excess water from the stool.
*he has enough small intestine left over to get up to full feeds and get off this nasty old TPN that is turning him AND his liver yellow (seriously. the surgeon said his liver is turning yellow/green - ugh). full feeds for him will be 45mL (an ounce and a half) every 3 hours. He said he feels he will be up to this in a months time. Fingers crossed!
*Riley is still on the ventilator that he was put on for the surgery. He is recieving high doses of morphine for pain which can make for shallower breathing and some swelling of his abdomen is expected from all the trauma of surgery today. This is will push up on his diaphragm and make it harder for him to breath deeply. Keeping his oxygen saturation up is important because his intestines need that consistent oxygen level to heal properly.
*the replogle tube has returned. currently it's a big fat tube going in his nose, down to his belly to get it empty of air and suck out the gastric stuff in his stomach and keep it from going through his intestines while they are healing. The did check the connections for leaks today but leaks could still occur. Here's praying that the pipes don't leak.
*he's getting morphine, and lots of it for pain
*he received ativan (probably screwed up that spelling also) for anxiety. poor thing kept getting startled earlier which made him flail about and then wince in pain. He also is already fighting the ventilator, and he needs the vent for at least 24 hours they say. So the ativan will help with that aggitation and just help keep him calm and still basically. its not really doping him up (the morphine is handling that for now), but it is helping to calm him (think Xanax or Valium). I asked the dr how they planned to keep the vent IN him once he comes around fully from all the surgery drugs of today. I'm fully expecting him to extubate himself tomorrow. I have his little mitts ready to be put on him, but he's alot stronger now, so I don't think he's going to wait for RT to pull that tube out. We'll see what happens. He did de-sat this afternoon, which isn't good, so hoping that doesn't keep happening either.
*he's not getting fed obviously right now. Will be a few days for that. He's not going to be happy about that either once the paralytic drugs wear off from today. He was already rooting like crazy in the pre-op room today. Another day or so and he'll be losing his mind :o)
*His blood sugars are really high right now. So have to do something about that.
Oh. an interesting thing we found out today. When we were in teh Pre-op room, and anesthesiologist was talking to us and asking us questions about him. She mentioned his weight being "4.6". This is kilos. 4.6 is the weight he was when he got here on the 14th...when he was already up over a pound in fluid. His current weight? Which is his TRUE weight...no retained fluid....is 3.9. that is quite a bit of difference. Medication is given based on weight. ALL medication. We mentioned to his nurse when we got back and she immediatly did the calculations of the meds he receives. Obviously he is getting MORE of them that is correct for his actual weight, but none of them are TOO much more. But, it will be changed and thankfully, it was discovered before something bad happened.
Another thing, a doctor from PEDS was covering the ICN this afternoon. Someone who has never laid eyes on Riley (or likely any other current baby in the ICN). Not sure why he was covering but he was. And he was a nice guy, no issues there. But a perfect example of why Duke stinks in communication and continuity of care from provider to provider. He walked in just as we were let back to see Riley after surgery. The nurse, mentioned to him that Riley didn't have an adequate morphine order on it. So he said he'd adjust it but basically that he DID have an order for Tylenol as needed. THis was from when he had the fever when he returned here. His nurse nicely correctd him before I had to open my mouth thankfully. because I would have said something along the lines of "MAJOR ABDOMINAL SURGERY + tylenol??? seriously? ". but it's all straight now.
Ok, so I THINK that is all of it. It will be a rough few days for sure. He doesn't look great, but he's being the fighter we know. THe length of his surgery today is about like a 9 or 10 hour surgery for an adult. REALLY a strain.
Thanks so much for all the prayers sent our way and encouraging words. It was a hard day, and it'll be a long night, but now we can REALLY work towards getting him home.