Coming up for air...

So months ago, I pasted this post, with a poem by Emily Kingsley. It's called Welcome to Holland. You can click on that link to read it again if you'd like. But basically, I feel like I'm in Holland right now, and I'm supposed to be in Italy.

Last night, I spent a LOT of time, reading back on my blog. From when Riley was first sick, from his earlier surgeries...and as I read my words, I could recall my feelings from those exact times. And yet never did I feel like this. His outcomes, while sometimes scary and concerning, never got me down because just the sheer fact that he was alive to have those outcomes was amazing. I suppose to some extent that is still true today, but lets back up...he wasn't sick when he went into the hospital this time. Nope, he was a happy, healthy baby who could have lived his entire life just as he was. Was that the ideal solution? No. But it could be done. He didn't have to go through the painful, major surgery that we were about to inflict upon him. It wasn't to save his life. It was to make him poop out of his bottom instead of out of his belly. But we did walk through those doors on September 2, and we handed him over to the medical staff and prayed that God would protect him. We prayed and friends prayed and family prayed and people we don't even know prayed, and he had the best outcome he has EVER had from a surgery. His results were nothing short of miraculous.

So what in the hell happened??? He was BREEZING through his recovery. Uncomfortable when moved around, irritable at all the disruptions to his sleep schedule, but he was rocking the recovery. They were going to send him HOME on Thursday. Does this look like a baby who needs emergency surgery? This was taken Thursday afternoon, 3 hours before his emergency surgery began:


I just do not understand WHY. Why this happened to him. He was there. He made it, he was pooping like the champ that he is, and he was eating, and it just isn't fair. He is WORSE off now, than he was September 1, has endured 2 major surgeries, 1 minor one to insert a central line, lots of pain and suffering, and has gotten very little sleep. He will now be set back in his gross motor skills, due to having surgery. And what does he have to show for it? A stoma that looks like it will be a NIGHTMARE to take care of. Not to mention, a fresh new stoma that may not handle the abuse of his army crawling very well. Lingering pain. Tubes up his nose. The list goes on, and NONE of it positive. He gained absolutely nothing from this surgery. True, we gained the knowledge that all of the large intestine he has left is salvageable, but that does him NO good if it won't stay connected to the end of his small intestine.
To say I'm angry would be an understatement. I'm angry at God and I'm angry at myself for many reasons. To watch him suffer like he has, and it be just an absolute waste...ugh it makes me feel like I am just drowning in sorrow for him. He of course is laying in bed, smiling and giggling away. He doesn't know, that one day in the future, he will be right back in that bed again, with the same risks. This just isn't how it was supposed to be.

So that's me. I've gotten some emails from people worrying about me. And that is how I am. I'm angry and sad and have forced myself to smile on the outside this weekend, since I spent it with Travis. All I want right now, is for him to be well enough to come home, before something ELSE can happen to him, and so my boys will be together.

He has had a fairly good weekend. He has been resting and recovering fairly well so far. He is still needing morphine off and on, which concerns me as he was off the morphine earlier than this last week. His nose tube continued to only put out clear fluid (spit), which is great because that means intestinal content wasn't backing up into his stomach (that is what causes the green goo). His new stoma started putting out on Friday, and had it's first bag put on it on Saturday. Today, the surgeon snipped his stitches and actually stayed in there for about 30minutes just playing with Riley. He said the current plan was to pull the nose tube (replogle) tomorrow morning, and us give him clear liquids until his formula came up from pharmacy mid-afternoon. When he said this, Jay said that Riley clapped right on cue. The surgeon ate that up. Tonight, Jay pulled the tube himself, after Riley had it half way there, as there was some bloody looking bubbles in it, which means it was scratching/irritating his stomach wall. So out it came. As long as all goes well overnight, he will start juice in the morning. Then formula in the afternoon if he does well with the juice. Hopefully, they will let him start back on his prevacid tomorrow morning also. Oh the drain tube dangling out his incision fell out today also. That actually wasn't ideal, as they wanted it in a little longer, but they aren't going to put it back in as long as all continues to go well.

So that is what is up with Riley.

Travis, was in desperate need of some Mommy time. Thursday night, when I called to tell him about Riley going into surgery, after he got his questions over about that, I told him that either Jay or I would be home soon. He said he hoped it was me, because he's missed me. That tore me up. So I knew I had to be the one to come home. Not that I didn't want to see him, but Riley being fresh from another surgery just had me so torn. But Friday evening, I loaded up and headed 2.5 hours away to home. It really was worth it. Travis was just THRILLED to see me. I surprised him, and I will never forget the joy on his face as long as I live. I was determined, that no matter how I felt/feel, that I was devoting the weekend to him and whatever he wanted to do. So he and I had a fairly busy weekend of lots of fun, yet lots of doing nothing at the same time. He seemed to enjoy every second of it, so I think it was a success. I will put him on the school bus tomorrow morning, then head back to Duke. Oh, one more thing about Travis...he was the biggest cheerleader in Riley getting rid of "the bag"..but when told it was back...he said "that's ok, I'll take him any way I can get him". and then when I got home on Friday, I noticed he had one of my hair rubberbands around his wrist. Turns out, he's worn it since I have been gone, "to remind me of you mommy....and it smells pretty like your hair". Wow, I have sweet boys.

The ferry we rode from Southport to Fort Fisher


It had the Duke blue devil logo on it. Travis couldn't believe we were on a Duke Ferry. I couldn't either.






And finally...I had this sent to me yesterday. Even in my angry stupor...I appreciated it and what it stood for.

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Speechless

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.

Back to surgery

The CT scan showed air and fluid where it should not be. They need to operate. He may end up with another ostomy. Please pray for no loss of bowel, no infections and quick recovery. What a waste this will all be if he ends up with an ostomy again.
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