Mega update

7.5 weeks of very VERY little sleep
7.5 weeks of painful, unconventional, too much stress on a body c-section recovery
7.5 weeks of choking down food you could care less about just to survive
7.5 weeks of pumping
7.5 weeks of referring to certain doctors as "Dr Death" because in the beginning, every time they spoke to you, they warned you how dire your baby's situation was and that they were preparing you that he could die
7.5 weeks of scrubbing the top layer of your skin off, just to visit your baby
7.5 weeks of trying to keep life as normal as possible for your 6 year old
Basically, 7.5 weeks of living in a pure hell, the kind that you couldn't even imagine in your worst nightmare.

However, hearing the man who will operate on your baby in 4 days tell you that it will be a very long, complicated operation, but your baby is GOING TO LIVE AND GO HOME ONE DAY for sure....makes EVERY single tear, EVERY single lost hour of sleep, EVERY single painful moment and utter exhaustion ABSOLUTELY NOT MATTER!!! :o)

I may have never said it specifically, but the surgeon warned us after the first surgery, that Riley's situation was bad. And truly, for the past 7 weeks, we have not known if Riley would ever be able to come home. EVER. We were told he simply may not have enough good intestine left to live after the infection finished destroying his body. So, ever since Oct 4, we have not known whether Riley would live to ride in the carseat that still rides in my van, or to see his cute fish room, or to even feel fresh air on his face. But that all changed today.

The surgeon who performed Riley's first surgery, put in his broviac today, and will perform his surgery on Tuesday, looked at his GI study results today. He said that the condition of Riley's bowels, although not perfect, are in MUCH better shape than he thought they would be. He has areas that will have to come out for sure. Some areas in his small intestine and some in his large intestine. But not as much as he THOUGHT would go bad when he did the original surgery. Thus the reason for not taking out anything then. There are areas he felt for sure when he seen them, that would stricture down and be no good at this point that look perfect on the GI study.

So the plan is this...Tuesday (as in 4 days from now) Riley will have major surgery. They told us to expect it to last hours. They will remove his intestines from his body and inspect every single centimeter of them. They will begin with his small intestine. They will reconnect the stomas he has now. They will inspect every single centimeter of his small intestine and remove the areas that stool will not pass through smoothly. If there are alot of sections removed, they will create another ostomy where his small intestine meets his large. He will have an ostomy there for 6 weeks just like this go around. This will allow his small intestines to heal and not push food through the still damaged large intestine. Basically to prevent his body from having to heal too much at one time is my understanding. Then in 6 weeks, they will go back in, reconnect that ostomy, remove the bad portions of his large intestine and then, be done.

Scenario 2 is they will go in, find the entire area beyond the blockage they can see, up to where they could see on the other end of the gi tract is bad. They will take that out, there will only be one or two segments created, and they will fix the large intestine, his ostomy and that will be all that is needed.

So he still could need another surgery. BUT...even with the first scenario...it is likely, he will be able to come home in between these 2 surgeries. He MAY need to remain on TPN for this next duration, that won't be known until after the surgery and he begins REALLY eating food, but he will be able to go home on TPN in this situation. It won't be his ONLY source of nutrition. Yes he was drinking breast milk this time, but it is SUCH a small amount, that really, its not for ANY nutritional purposes. Just to keep his oral skills up, and give his liver something to process. Whereas, in this case, his ostomy would be so much lower in his GI tract, he will get quite a bit of nutrition from milk, and just need the TPN to supplement.

The surgeon said that he is really pleased with what he saw from the contrast study done today. True, it could have been better. But it also could have been much MUCH worse. He said there is now a 50/50 chance of either scenario 1 or scenario 2 occuring. But regardless, he at the absolute very LEAST should be allowed to recuperate at New Hanover if for some reason he could not go home, but he feels he will likely be able to go home in between.

so this is also a big reason in why they did not try for a PICC today. If Riley needs TPN for 6 or more weeks, and most importantly, if he is to be discharged on TPN...he will have to have a Broviac they say. Since we felt we were already at the point of getting a Broviac, and there had now been 8 attempts to get another PICC line in him, and the OR space was available, we said "do it". So about 5pm today, they took him to the OR, intubated him, and the surgeon placed a Broviac in his sub-clavian (I think...med people help me out) vein. This is just at his collar bone. So he has a small incision right at his collarbone and a small incision further down his chest, maybe right about where his breastbone ends where the broviac catheter exits his body. It's really not as bizarre looking as I had imagined. I'll be interested to see what the exit site looks like at the first bandage change. Just cause I'm curious like that.

He did fine during the Broviac procedure. Afterwords, his heartrate was a little high and his blood pressure elevated, so that is an indicator of pain or at the very least, discomfort, so he received some morphine for that. He was feeling NO pain when I got here and was very drowsy, but alerted a little when I got in there talking to him. And I of course scooped him out of his crib and here he snoozes, content as could be. The broviac isn't actually being used yet as it was a little too high and they had to readjust it and then get another xray and we haven't heard yet if still too high. This is a common issue and isn't harmful, they just want it in the perfect positioning before using it.

Jay said he did SO well during the GI study and all the after Broviac manuevering. He said that during the GI study, he just laid there sucking on his green paci and when they wheeled him away for his Broviac, that paci was just a wiggling also. He does love him some green paci :o) The GI study sounds like it was interesting. He was strapped to a board thing, with his arms up over his head and legs stretched out straight, NAKED. The board rotated side to side and at times, Jay said Riley was practically hanging upside down on it, and the entire time he just sucked away on that paci. Near the end, he said he started grunting a little and trying to get his arms from over his head, but never really fussed and no crying. What a trooper he is! He didn't cry any after his surgery today either, if it weren't for the elevated heartrate and bloodpressure, there would be no signs of discomfort. This makes me so proud and yet sad at the same time. he is such a trooper and that makes me unbelievably proud of him, but sad that he has experienced so much pain that things that would make a normal baby scream their lungs out he doesn't flinch at. When I grow up...I hope I'm HALF as strong as he is. Everyone who has told me how strong I am, I always laugh at. You want to see strong? Wait till you get to meet Riley!

So I think that catches us up. Here are a few pictures from his GI study adventure today. Via Cell phone of course. Can't post "real" pictures until I get on a computer. You get the gist though. ;o)


Ha ha. I love this picture. The wide eyes and paci. His arms are under the blankets up by his head. He totally looks like he's wondering "your gonna do WHAT?!" to me.


See the guy? See his hands rotating the little thing Riley is laying on? You can see it's tilted at an angle. This rotation helps the dye move through Rileys intestines. Pretty interesting I thought.



Oh, since he was two pounds heavier swollen with fluid last weekend when I last saw him, he looks SO SMALL to me tonight! SO SMALL.