A scar is just a scar

So, today we had our post-op VCUG and renal ultrasound. We were supposed to have it a month after the surgery, but Children's is so backed up that we had to wait three months for this appointment. (this is relevant, I promise)

Ryan and Evan have been coughing since, well, like September, so did not even think about the ramifications of a cough, and administering laughing gas to my boy. Okay, I did, but I thought that I could clear his lungs enough with a little Albuterol, like I did last time. No problem.

Well, not so much. When the nurse listened to him she could barely hear air moving he was so congested. Yeah, I felt like a total negligent mom when she asked me if we had seen a doctor for this cold. No, we haven't. If I ran to the doctor every time one of these boys had a cough, they'd have to give me a job. I generally treat at home. I have my own stethoscope for goodness sakes, I know what junk in the lungs sound like. I KNOW what blue lips look like. Any---Way....

No Nitrous for Ryan.

My options, reschedule. (and wait another 3 months) or let him go through with the procedure with no sedation. Here's bad mom number two moment. Aw heck, let's just go for it. He'll be fine.

And he was. Totally.

There were tears, and he was scared, but he was wonderfully brave, and he still managed to laugh, joke and make me laugh during it all.

And then we had spicy noodles with chicken for lunch. And sticky rice with mango. And lots of hugs and reading.

Oh, yeah, and his reflux is gone, his surgery worked, and aside from another ultrasound in a year, we are free. Free of meds, free of Urology clinic, free of annual VCUG's (with or without nitrous)

WOOOOOOO HOOOOO!!!!

and Exhale....

All went well on Friday. Ryan was in and out of surgery in less than two hours. They found all that they expected, scar tissue consistent with grade IV reflux. They re-implanted the ureter and did not expect anything but total success.

My boy was such a trooper. Here he is in the waiting room.





I missed the best shot of the day because I couldn't get my camera out fast enough. When it was time, the nurse took him by his hand and walked him down the hallway. Ryan looked back, smiled, and was off. I will never forget that image, I just wish I had it to share.

Here he is being rolled from recovery to his room. He was so sweet, just after I took this he reached out to hold my hand. Not easy to walk along side a bed moving quickly down narrow hallways!


In his bed, being silly. He was such a brave boy. Only shed a few tears, once when he moved from the gurney to his bed, he said it was because he couldn't see me anymore, or my theory is he hurt himself a little bit during the move.


He was in a considerable amount of pain the first few times he tried to get up, and when he tried the first time to pee, but otherwise, he was content to have us read. So, from about 3PM on Friday until he was released at 11 AM we read, and read, and read.

By Sunday it was difficult to keep Ryan from popping out all of his stitches, and today, I feel like it's going to be a long, long three weeks.

I have heart burn

I'm sitting here on the eve of Ryan's surgery and I don't know what I feel.

As I kissed him goodnight this evening, I got a bit teary.

Overcome.

I am struggling for the words to explain the emotions.

I think when you go through an experience like a pre-term birth, followed by an extended NICU stay, filled with complication after complication, you always (even more than four years later) fight with a bit of post traumatic stress.

The feelings rear their ugly heads at the strangest times (and the most obvious ones). They fill you up from your heart out. It's like a slow burning. Like heart burn only deeper in your chest, its in your soul.

Intellectually, I know he will be fine, better than ever.

Emotionally, I'm a wreck. All over the map. Cleverly held together by two little boys who don't know what to do when their Momma cries.

My heart soul is burning and it is not showing signs of stopping. I suspect it will finally ease up around the time I have my baby back in my arms tomorrow.

Superstitious?

I had a dream last night.

In it we were moving to the Bay Area, in a week.

Scott and I were sitting in a restaurant with some of our friends from up there.

One friend no longer lives there.

He passed away almost two years ago.

Two years ago on the twentieth.

The twentieth is the day Ryan's surgery is scheduled.

Should I worry?

Enough is enough

When I think of all of the things my boys have endured, I just want to scream, "Enough is Enough!"

Sometimes I look at and touch their scarred little bodies, and I fight back the tears. I run my finger across the two inch scar on Ryan's back and recall the moment we had to make the decision to let the doctors go in and operate on my days old baby. I remember sitting next to his isolette in the surgical suite, looking out into the NICU at my other child, waiting for the surgeon. I remember arriving at the hospital extra early just to make sure I was with him before the surgery. I remember sitting in the NICU with Evan, watching the surgical suite, incapable of really being with either of my boys.

Sometimes I tickle the half an inch scar on Evan's chest. I remember the phone call, just days after their birth. I remember falling to my knees, covering my face as Scott spoke to the nurse who called to tell us about Evan's pneumothorax, about the chest tube, about the possible IVH. I remember saying "Let's go!" I remember that drive being the longest ever. I remember holding my breath for twenty minutes. I remember reading everything I could find about Intraventricular Hemorrhages, and what that might mean for Evan.

Sometimes I play with the boys feet, and rub the tiny centimeter long scars that mar all four heels. I remember becoming far too adept at using the little device that made those cuts, squeezing tiny droplets of blood for testing, every three hours. I remember reading the results of those tests. Every three hours. Looking for signs things were improving.

Sometimes when I hold my boys hands I look at the little white dots that line their veins. I remember watching and holding those same hands as a nurse tried and tried to start IV's week after week. I remember the little light shining through their fragile hands and skin illuminating the very tiny target.

Sometimes when I look into Evan's eyes, through his little glasses and I remember. I remember the two laser eye surgeries. I remember our nurse coming in early just to be there in the room with him, knowing we could not. I remember worrying about putting my baby back on the respirator, wondering if he would come off it again. Wondering just how much he would struggle to breathe. I remember sitting bedside as he was extubated, holding my breath until he began to breathe with out the assistance of the respirator...twice.

But all of these things are behind us now, and thankfully I am the only one who has memories of all of it.

We are now making new memories...

Memories of going to the doctor and having them take pictures of our insides.




Yes that is Evan and Ryan reenacting their VCUG's. Really cute, but part of me is really sad that they can recreate such procedures.

Okay, round about way of getting to the point, I know, but it is my blog and I had to get some of that off my chest.

Evan's reflux is gone. YAY. It may come back, we just have to be on the look out for UTI's and if he has any repeat the VCUG. That also means Evan is TOTALLY off all medications, with the exception of Albuterol which is just PRN. Double, Triple YAY!!!

Ryan, as I suspected from my lay persons analysis of the scans, has shown no improvement. We have two course of actions we can take at this point. Continue with the wait and see and the medications, with a one percent chance this will resolve on its own. Or do one of two surgeries. One they inject synthetic cartilage into the valve and hope it helps strengthen the valve. It is minimally invasive as they go up through the urethra. HOWEVER, yeah there is always a but, it is only about 50 percent effective. The other surgery will have them make a 4cm cut into the belly of my baby and fix the valve at the bladder. He will have to stay overnight in the hospital, at least one night (gah). This is 95 percent effective. If it fails, they will go back in after a year and do it again. Our doctor, has never seen the second attempt fail. In his hands he has never seen a first attempt fail. (a little arrogant, yes, but a part of me kind of likes that in the guy who is planning on cutting open my baby, he knows what he is doing, and he isn't afraid to tell me so, overconfidence no thank you, but this, not so bad.)

I agreed to let him put the authorization in for the surgery and it could take a couple of weeks for approval and he is booking out 2 months right now, so, we still have some time to reconsider, a thousand time or two. Time to think about a new scar on my baby, one he will likely remember, there is no doubt I will.

There are worse things

Before I get into the heavy stuff, there are a couple of things that are so cute I have to share:

This morning while we were having our morning cuddle, Ryan starts smothering Evan with kisses. Evan began to protest and Ryan replies: "But I love you so much I just can't stop kissing you!"

While playing superheros Evan says: "Ryan is my brother, he is the awesome-ist super hero EVER!"

Now, this one, I don't know where it came from, I do know he has used this word properly before, so he learned it somewhere, but not from me. I was in the other room and I couldn't see what exactly prompted Evan to make this statement: "My pubis is sticking out of my footsie."
I still haven't stopped laughing.

________________________________________


So I sit here on the evening of our fourth annual VCUG, and I have to admit I am worried.

I'm not fretting about the procedure, although not fun, I've been through it so many times, sadly, I'm comfortable with it. Last year we were able to take the edge off by using Nitrous. (for the boys not me) We plan to do so this year, however, Ryan has a cough, so it may be a no-go on the sedation. Which means 15 or so minutes of screaming and crying while holding my 39 pound child pinned to the table as people attempt to catheterize him. Super fun stuff for 9 in the morning.

Really what I am worried about is that Ryan's kidney reflux has not resolved on its own, and sometime in the next few months we will be forced to schedule surgery for him. With all that my boys have been through, I know they will never remember it. The surgeries, the tests, the hospitalization, it will all be family lore to them. Stories that Mom and Dad told us. But a major surgery now? It may not be a memory that lasts a lifetime, but at four, they are remembering everything. Just how much of this possible terrifying thing will he remember?

If his reflux hasn't resolved, I will wonder if I should have done the surgery last year, he would have been younger, and the likelihood of him remembering would have been a little less. But last year, I knew I had one more year to stall. To hope he would not have to endure. (Success rate in children under five is something like eighty percent, over five it goes down exponentially) Last year I knew he only had one UTI, only one in two and a half years. I knew I wasn't doing any damage to his kidneys if I waited. As long as he stayed infection free...which he did.

I won't know the the results until next week, but I will be taking Ryan in, and letting Scott take in Evan, because after all this time, I'm getting pretty good at reading the images during the procedure, which in itself is most definitely NOT a good thing.

I feel silly worrying so much. All of the what ifs will be resolved in a little less than a week. We will move on from there. We will make decisions. We will do whatever it takes. Still this is my baby.

I know there are worse things. I know people who REALLY have worries. When I think of it rationally, and I take MY child out of the equation, this is nothing. In fact, when I think of those other people, I get a lump in my throat, there are far worse things.