Friday, September 11, 2009


So I have sat here and stared at this screen for a long time. No words would come. I am just devastated and numb and speechless. The surgeons are speechless. The nurses are speechless. Did this really just happen?

Riley had a CT scan yesterday as a precautionary measure just to make sure there was nothing going on in his belly that shouldn't be, since he had that spiked fever the night before and his white cells were elevated. Truly everyone involved, the surgeons, the nurses, myself, looked at it as JUST precautionary. We thought that central line was the real culprit of the fevers and in that case, they would pull the line, prescribe oral antibiotics and send us packing home. HOME.

Instead, about 3:30 yesterday, after I had just fed him a bottle and changed yet another dirty diaper, the nurse came in to deliver a message from Riley's doctor saying "no food or drink, we will be up shortly". I knew that meant bad news. Yet how could it be? Riley had his best day since surgery yet. He was awake alot, he played with toys, he played with me, he sat in my lap on the windowsill and looked outside and ooohed and ahhhed over the dump trucks and bulldozers doing construction out there. A little butterfly that kept flying around our window captivated him for a long time. He was still uncomfortable being transferred from bed to my arms or to the stroller, but once he was there he was content. So how could there be anything serious going on?

Turns out the CT scan showed a pocket of air and fluid outside the bowels which meant there was or had been a leak. Since he was stooling fantastically, eating well and passing gas, they thought that it likely HAD been a leak, and had sealed off now, and they just need to go in and clean up this pocket of yuck. The OR was being arranged and surgery would be in a few hours. I call Jay to let him know to hit the highway. Our surgeon was off yesterday, but had been called and he was coming in to do the surgery himself.

So the nurse begins to do all the pre-op bloodwork needed (thankfully, his line cooperated and she could get all she needed from that). I made a few phone calls and packed up his room. They were supposed to call and give an idea of what time surgery would be and then I was going to run our stuff out to my van then. Instead, all of a sudden, they were at the door to take him to pre-op. I had to just leave our stuff in the room, but I really didn't care. We waited in pre-op for quite a while. Dr H, Riley's surgeon came by, and was SHOCKED when he saw Riley. He examined him and asked me how he had been acting and when I told him (Riley was laying there clapping his hands at the time) , he said "you know, we treat kids, not xrays....if you were to convince me to take a wait and see approach, after seeing him, I am not opposed to that. But at the same time, these things can get nasty quick". So we agreed to just keep going forward because IF it got nasty quick, he would be much more compromised than just a high white cell count. And what kind of choice is that for a mother? But it was obvious he was torn as to whether it was the right thing to do or wait another day or so. Riley didn't LOOK sick.

They finally took him to the OR about 7:30pm and called out about 8:05pm to say they had started. We had to wait in the main adult OR waiting room which was loud and busy and stressful. A little after 9pm he was suddenly standing in front of us. No phone call to day they were done or anything so he spooked us. He looked defeated. And when he spoke, it was obvious that he was just bothered by what had just happened.

What he found was that the connection that was made where he hooked his ostomy back up (the only connection he had to make) had basically eroded. It had opened up like pac-mans mouth, and let stool and air pour out into Riley's abdomen. The body is VERY good at sealing off stuff like that, so it basically made a tissue pocket around these foreign contaminants and kept it from getting into his entire abdomen. That is why his white counts were up...his body had to fight something, but they weren't off the charts (and actually had come down since the mornings blood work) because they had it sealed off and protected from the rest of his body. And since it was sealed off, stool AND gas (which is what was most shocking) was able to make it's way out of his body properly now. Un.Freaking.Real.

Something else about the way the body works...when you go in, and do a surgery like they did on him last week, and start manipulating and sewing on your intestines, in its' healing process, it kind of oozes and that makes them just form a big blob of intestines basically. He couldn't tell one loop of bowel from another and certainly couldn't try and stitch up the opening with them all stuck together like they were, because in all likelihood, he would have stitched one loop of bowel to another loop of bowel and caused a bigger problem. So what he had to do (after cleaning up the pocket of fluid) was snip the stitches in the connection, and bring his small intestine back to the surface for now. He was BARELY able to separate the small intestine enough to do this and in fact, couldn't do it quite the same so it will be a little different this time. Hopefully it will bag as easily. We haven't actually seen it yet. He also put a drain tube in, this time,along his incision line, to drain out any leftover fluid and oozing.

So he is right back to where he began 10 days ago, maybe a little worse off. Not to mention 2 major abdominal surgeries that haven't made any progress for him. And he will have to go through it all again at a later date. As to the "why" this happened, that of course is not known for sure. One of his connections leaked during his last surgery, and made a big mess of things and made him gravely sick as well. Maybe he's just prone to this sort of thing. Also, his large intestine is small and unused for the past 11 months, and so it was more narrow than the small intestine. It could be that back pressure of fluid and air coming from his larger small intestine to his smaller large intestine popped the stitches. Next time, he will try and put a little vent tube to the surface to help with this pressure, although I'm not quite sure how that works safely yet.

He went to the PICU overnight, and did great. By the time we got up there, he was WIDE awake, much more alert than he was after last weeks surgery, had rolled to his side and was putting his paci in and out of his mouth at will. He was fretting though and they were thinking his morphine dosage was not keeping his pain controlled, but once I walked up to his bedside and patting his bottom and whispered to him, he settled right down. They have had to do blood work with needle sticks as heel sticks don't work on him anymore (takes too long to get the blood and they kept clotting), and those have gone decently well. All his vital signs did great overnight and so they moved him off PICU this morning and back to a room. He looks good, and they are keeping him comfortable with morphine. The surgeons are very pleased with his current condition, although they too are just speechless over what has occurred.

Obviously, we are thankful that he is safe and relatively healthy, all things considered. But we are just devastated at this outcome. Depressed and broken is more like it. They keep warning us that he could get sicker since they have gone in there and stirred things around. We are praying that doesn't happen. Right now, our hope is that he will have a quick recovery from this setback, begin pooping out of that stoma and eat. Eating won't be as much of a trial this time since we aren't testing connections and stuff.

He is SUCH a sweet baby. I do not understand how he could have such a fantastic, miraculous outcome last week, only to have this happen this week. It's just not fair. He doesn't deserve this.



Brad, Carter's dad said...

Hang in there Riley. We are all thinking and praying for you and your awesome family, little friend.

Anonymous said...

Lindsey, Thanks for the update...needless to say, I am heartbroken as well shedding many tears for little Riley. Praying for a quick recovery with a more painless day today for Riley. My love to you all. Hugs, Pauline

Anonymous said...

Just so sad and devastating. It is like a nightmare. Praying Riley recovers quickly, and remains healthy. It is hard to find words that convey my feelings...only tears!

Much love and many hugs,

Anonymous said...


You all are in our thoughts and prayers. If there is anything we can do please let us know.

The Ludlum's
(old Neighbor's and Riley's NICU Neighbor)

Anonymous said...

Not sure what to say, just praying for you and Riley.

Cindy said...

heartbreaking to say the question...if they can replace grandma's heart valve with a pig valve, why isn't it possible to use doner intestines???

Anonymous said...

Girl, we are praying for you. I am terribly sorry that you all are having to go through all this. Keep being SOO strong Riley!...

Anonymous said...

Lindsey and family, I know you have and are going through a diffcult time, we all wish there was a way we could help, we will continue praying for Riley and all of you, Doris

Anonymous said...

Lindsey, we are praying for all of you, especially Riley. I know this wasn't the news you expected and we are sad with tears. Praying that Riley recovers quickly. Love, Debbie and Gary


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