Sunday, December 14, 2008

a much better weekend

This weekend was MUCH improved upon last weekend. You know, the weekend of the belly eruption? :o)

Travis and I got up here Friday night to find Mr Riley feeling good and being social. He's full of smiles this weekend. At every assessment, as soon as his nurse walks up he just gives her a big grin. I tell them he's trying to sweet talk her into feeding him! And that little secret I was holding on to earlier in the week? I'm still scared to jinx things, but I'll share now, as I can't explain something else without sharing....since about Wednesday, he has been stooling out of his stoma and NOT his incision. They had put in another penrose drain into his incision site to make sure it stayed open as long as he was stooling and then, he quit stooling out of his incision and began to poop from his stoma like a good boy. So after 2 days in a row of his penrose drain being yanked out/off (it's held in place by 2 stitches....OUCH), surgery decided to leave it out. His incision is looking good now (as good as his incision can, with all that has gone on since surgery). His belly girth is staying down and his stoma is putting out well, at least it seems that way to us. So that was my secret. Riley is pooping as he should, out of his stoma and not from his incision.

Which brings us to an interesting place...Surgery has to now decide if they think repairing his leak is worth the risk to the rest of his intestine right now. Let's back up...every place that Riley had intestine removed and then the good ends sewn back together is called an "anastamosis". He had a leak in one (assuming only one) anastamosis site, which is why stool was pouring out of his incision and NOT his stoma...the anastamoses are BEFORE his stoma in his GI tract. So the leak formed in an anastamosis site, and formed a fistula to the incision so that the stool could exit his body. Pretty crazy the way the body works to protect itself right? Well. Now he is NOT leaking and stool is going out the way it should. Sounds PERFECT right? BUT (there is ALWAYS a but)...this does NOT mean the leak is actually HEALED. It just means it's not leaking NOW. So..there are 3 NEW scenarios of what is going on in Riley's body right now....
1) the leak in the anastamosis has healed. PERFECT scenario. Also the absolute LEAST likely scenario.
2) the leak has healed...but has healed ONTO a loop of intestine next to it. Hard to say if this is second best or not. yes, it's healed, but healing to another loop of intestine means when the leak is repaired at his NEXT surgery (remember, he'll still have at least 1 more surgery in the spring or so to repair the rest of his bowels and reconnect his ostomy), it could mean loss of bowel where the leak healed to another part of intestine. We don't want ANY MORE LOSS OF BOWEL in the small intestine.
3)the leak is literally corked with another piece of intestine. This is probably the MOST likely scenario from what we can gather. Basically, the hole in his anastamosis is still there, but another loop of intestine has kind of corked the hole. Will this last until surgery in the spring??? Who knows. Could we get Riley home and him move just right and the hole come uncorked and him start spilling stool into his abdomen? YEP!

So there you have it. Interesting and weird and scary and bizarre right? The worst part is that without doing surgery right now, they have NO way to know if the leak is healed in some way or just corked. If they did a GI study, it would just show that the dye moves through and out the stoma because right NOW, the leak, regardless of the reason, is closed. Frustrating, and I swear ONLY Riley could have this sort of thing!!!

So the surgeons should let us know tomorrow what they think is best, meaning go ahead and go back in THIS WEEK and look for the leaky spot and fix it if it needs fixing, OR let him start eating, keep a close eye on, and possibly send him home with a potential leak, until his next surgery in a few months. We are guessing they are going to say leave him be for now....his lab numbers are improving, his incision and cellulitis are looking great and cleared up, he ACTS great, his stoma is putting out....there just seems to be no reason to indicate the benefit of going in right now outweighs the risk of more damage. We'll see what they say though.

So that's all the technical stuff of the weekend. More fun things happened too! We brought a little Christmas tree up and put it on the shelf above Riley's crib. I took some pictures of Riley and Travis together yesterday that came out decent considering the circumstances. Our favorite roomie EVAR got moved back into Riley's room last night, so hooray for that. We missed them! And Carter is just the cutest little thing, and like Riley, has had a tough road but is amazing everyone. You can read about him here: . Med-wise, Riley finished his Meropenum antibiotic, and his Gentamycin and had his last dose of Vancomycin tonight. This just leaves Zosyn for 5 more days and then he will be antibiotic free again. OOOOH how I hope he stays that way. He's soooo at risk for a super-bug cause he has NO bacteria in him right now, bad OR good, so we need to let that good stuff build back up. We also need to get him eating so some of the immunities from my milk can give him a boost.

One thing that is SO tough about being at Duke, is their NICU truly cares for the sickest of the sick. While Riley would never have had to come up here if we had a peds surgeon at home, there are a lot of other reasons babies are flown into here. SOOOO many babies are SOOOOO sick. It's not just issues of prematurity going on up here. There is a baby in Riley's room right now, that has SOOO much equipment and Meds going on for him. He's a BIG baby too. WAY bigger than Riley. he's on a special cooling blanket that cools his core temperture WAY down. I am not sure what his story is, but i know it has to do with severe oxygen deprivation, and the cooling somehow helps the overall effect. This baby crashed today, but thankfully they got him back. He has NO LESS than 15 IV pumps hooked up to him and all sorts of other stuff. Carter was on ECMO for a long time and has had several surgeries. Riley has had 2 surgeries already and is missing a big chunk of his intestines. And that is JUST in Riley's room. Times that by 8 rooms. It's amazing what all goes on up here in a day. We got a REAL dose of reality on Friday, not that we dont' get them daily anyway, but this was WAAAY too close to home. I know I mentioned the baby that was flown in and shared a room with Riley that had NEC. He continued to deteriorate last week and on Friday, surgery decided it was time to go into his little belly and see what was going on. He was so sick, they had to do the surgery right there in the room. He wasn't stable enough to go to the OR. Basically, they opened him up, and found that his intestines were not salvagable. There was NOTHING they could do to help him. NEC completely destroyed his intestines and he will die. They opened him up, saw this, and just closed him up. There is no amount of medicine or surgical skill that will save enough intestine for him to live. Friday evening, they transferred that little baby back to his home hospital so he can be closer to his family while he lives out his last days. We were so quickly reminded how that COULD have been Riley. They could have easily found the same exact thing when they did his surgery. He was THAT sick as well. Thankfully, we made it past that point. And this turn at Duke overall has been MUCH better than the first go round. Riley has GREAT nurses on his team. We've learned "the system" and how to deal with it. I'm not happy we are pro's at it, but we are and he's here and if we can just get him eating, he'll be able to go home. Long road or not...we are truly blessed.

Mr Personality flirting with his nurse


Click on this picture for video!


Little bobble head.Click on this picture for video!




Mean old mommy gave him a bath. Click on the picture for video!

6 comments:

Anonymous said...

Lindsey, Very interesting! I'm praying God leads the surgeons to make the best decisions as to what is best for baby Riley at this time. I thank God for all the healing for Riley. Way to go Riley, keep fighting. Love the picture of Riley and Travis...so sweet! Love, Pauline

KT said...

Lindsey,

I am glad that all of you were able to spend a decent weekend together. Unfortunately, the NICU is always busy caring for sick babies. We've been on both ends as parents who lost a child and as parents who walked out of there with a child. It's extremely emotional either way.

You do get to know the routines and happenings of the hospital and NICU very quickly. Since being released from the NICU, our son has been back in for a little less than three months due to his ostomy takedown and then intestinal complications. We have been home with no visits since mid-June. I was taking him to an eye visit a couple of weeks ago. As I sat there at the light at the main entrance, I realized I did not remember what the traffic pattern was. It was a good feeling to know that I did not HAVE to know it any longer. I hope that your family gets to a point like that soon.

Katie

KT said...
This comment has been removed by the author.
Anonymous said...

Lindsey: Glad to hear you all had a better weekend! What a little flirt he is....so cute! It's so great to see the power of prayer in action......Keep Fighting Precious Riley!

Kim Maguire

Anonymous said...

Wow! Isn't it amazing what knowledge you acquire, that you never cared to know just a few months ago? Scary, but necessary. It is so good to hear Riley is doing well.Hopefully,things will remain as they are now, until his intestines can heal more. Also, he is finally feeling so much better, and without pain. God love him, he is the little flirt, isn't he! Just sooo cute and sweet. Loved the picture of Riley and Travis together. Travis is getting to be quite a pro at holding his little brother. Glad to hear baby Carter is back in your room. I read his story, and he is a cutie,and quite a fighter also. When he and Riley grow up, they can compare "battle scars".
God bless them both, and may they continue to make advances.
Love and Hugs, Dale

Jenni said...

Lindsey:

I'm so glad to hear that Riley is doing better and pooping out of the right place now! I had no idea how many sick babies there were before Jacob was born either. It truly was eye-opening being at Duke. All babies, sick or healthy are miracles. Many people really don't understand how truly lucky they are to have a healthy infant who doesn't need surgeries, and hospitals, etc.

We have been so blessed that since Jacob's open heart surgery at 6 days old, he has done AMAZING. He is a normal, active two year old now. I hope that in the months to come, little Riley will be the same way.

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