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."