My Heart is Heavy

Because we've lost another of our amazing friends...

Pablo Thrailkill Castelaz will be laid to rest today, June 30 2009.

He left this life as he entered it .. beautifully, gracefully, in the loving arms of his Mommy, Papa, and dear big brother Grady.

Your fight is over sweet pea, we wish you love and peace.

Six years just isn't enough.

It's been a long day...

So V's surgeon called this morning and he's scheduled for his Gtube revision on Wednesday. He ordered us to pull out his mic-key button today in preparation for the procedure. Fortunately he does eat and drink orally but not alot. It wouldn't matter anyway, because everything we do mangage to get down him comes pouring out of his stoma.

It isn't pretty.

He's fairly uncomfortable and our efforts to console him are leaving something to be desired i'm afraid. As long as i can manage a bit of motrin every few hours he seems most comfy just laying on his pillow on the couch... the dog appears to enjoy the company too. He still manages a few good kicks to her noggin every now and then, so she feeling pretty much at home.

It's an odd relationship they have.. but it works for them.

Anyway, at 6am Wednesday morning we report to APH and hopefully we will leave with a healthy toobie. Most likely we'll be there overnight so they can keep a close eye on their handiwork.

I'm crossing all my fingers.. and toes that this works.

I'll get some pics of the lil man as soon as our camera is up and running again. Say a little prayer for the toobie gods to grant us smooth sailing.

One Down

Surgery went well, they removed the old tubes and all the gunk that was surrounding them. They drained all the fluid from behind his eardrums, and placed the new set of tubes. While they were in there they removed his adenoids so that maybe in the future, the fluid that keeps building up will be able to drain more easily.
Our pediatric surgeon stopped in when he was in pre-op to take a look at his g tube. He thought maybe he could do something while he was in surgery that day and get it over with but it didn't happen.
After talking with us and looking at him, he's decided that V needs to be scoped again and have a new tract placed through his abdominal wall. After he has a week or so to recover from this round of anesthesia we will have him admitted for a couple of days. His current button will be removed and the stoma will be allowed to close. Then he will take him to the O.R. and scope him to get a good internal look and replace the tube in a new tract.

Lord I hope this is worth it, my poor baby isn't eating right, his skin is absolutely wrecked around this current site, and he's so uncomfortable. I really hope this works.

Last but certainly not least.. I have to give a big happy birthday shout out to my oldest son William. The day of the surgery, June 24, my boy turned 16 years old. I am so very proud of him and proud to be his Mom. I'll have to get a picture on here soon, he is just so handsome.

Please Pray...

For one of our bestest lil men.. Jaxson (Jaxson's Fight).
He and his Momma are having a very rough time right now and they can use all the prayers and loving they can get. Jax is pretty sick and having lots of pain since his latest surgery. He is also having some problems with his heart and his Momma Lacey is scared and exhausted. She has spent so much of her time making blankies for other peoples children who are ill (including a beautiful one for Vincentio) and now she is in need of some serious payback, so go show her and Jaxson some love at jaxsonsfight.blogspot.com.

Lacey and Jaxson... We Love You!!!

I Was Right...

How often does that happen???

When it comes to my cautious optimism, pretty darn often.

I took that button out all night til it was a mere pin hole and STILL my poor baby is a leaky mess. To top it off, the dressing came loose last night and his whole side is red... ooohhh!

Next step i've taken is to call in some advice from our friendly pediatric surgeon. The yahoo that put this blasted contraption in my baby in the first place.

Really he's a great guy, he seems to think that with all the abcessing and infections that he suffered in the first months after the tube was placed, that this site may be a lost cause.

He had to go back in several times after the initial placement to drain abcesses under his skin and even placed a temporary drain once. He's leaning toward the idea that we may have to resite the tube altogether.

Wow.. i'm so excited (can you feel the sarcasm?).

Not what I was hoping for, but if that's what it takes then I guess we have no other option. V's already down nearly two pounds, and for a kid who was decidedly NOT chunky before, it's kind of a big conscern.

For now, I will follow suit with the Boom Boom and focus on some daily gratitude..

I am grateful that Vincentio will eat some things orally and one of those is potatoes. If I make them thick enough, potatoes aren't leaky... how's that for some outstanding parenting???

Hoooweeeee!

Alrighty, I am being cautiously optimistic here. With all the gadgets and doodads we've been given to try an get a handle on this gtube mess, the dreaded "anorectal paste" seems to be the winner so far.

Critic-Aid skin paste has become my magic potion of choice. I have actually been pulling his mi-key out for several hours each evening and just letting it be. I dab on some paste and cover it with some versalon sponges and away we go. Another awesome product we've been introduced to through our wound care team is Mepitac Tape. It's a silicone tape that is made especially for wounded skin and lord almighty the stuff doesn't even leave a red mark. This kid has a second degree burn on his side they are also treating from an accidental run in with regular tape, and this Mepitac stuff hasn't left a single mark on him. I love it!

Tonight I had the button out for about two hours and his skin looks better than it has in weeks (I hope I'm not jinxing it).

He even did something very rare and downed an entire 8oz. bottle of Pediasure.. and so far his gut hasn't sprung any leaks. I am amazed and excited especially since this upcoming surgery is going to leave him with a very sore throat and most likely little appetite for a while.

So tonight is a happy night and hopefully tomorrow will be more of the same.

A New Perspective

Now that Mommy's had a brief but fruitful meeting with Jose Cuervo and Associates, I have a newfound relaxation.

Gotta love that.

This weekend I'm going to try to loosen up a bit and enjoy the free time with my kiddo's. Next week is surgery, and although the upcoming procedures are rather routine, there is never anything "routine" when it comes to a child like ours having any surgery. There will be the obligatory checks with cardiology to get clearance for anesthesia. Their decisions will let the team at APH know if he must be taken to a cardiac O.R.

They tend to prefer doing any procedure on V with the cardiac team because of his level of pulmonary hypertension and lung scarring. You see, when he went into congestive heart failure before his open heart surgery, it wasn't the gradual downslide that we had been prepared to see. As always he did it his own way. One morning he was fine, and two hours later Daddy was doing CPR on him in the middle of our coffee table. It hit hard and fast. When anyone suffers CHF there are repercussions on the lungs, but his was so acute that the sudden severe pressure increase caused scarring in his lungs and that always keeps the docs a bit worried.

That combined with the injury from the diaphragmatic hernia he developed that collapsed his left lung, caused further damage.

So we constantly dance the dance called "wait and see".

His heart defect damaged his lungs, the defect was repaired, now the damage in his lungs could potentially cause problems with his heart function if his pressures get too high.

So we will have a blissful couple of days over the weekend and on Monday I will start making the calls to prepare for Wednesdays surgery.

Hopefully all will be simple and sweet, the procedure will be outpatient and by Wednesday night it will be but a memory.

Mepilex and Margaritas

The Mepilex is an adherent foam dressing for lil man's "you know what"...

The margaritas are for "you know who"....

Anorectal protectant is back in action, sticky dressing, absorptive doodads, and some other junk I haven't even taken out of the bag yet.

*sigh*

Right now I'm salting the rim of my glass and breaking out the blender.

Go me.

Aaaaaahhhhhhh!!!!!!

Just so you all know, and to account for any misspellings.. I am currently banging my head into the laptop.

Why you ask?????

Guess!

IT'S NOT HELPING.... IT'S MAKING IT WORSE!!!!!

Aaahhhhh!

BOILS and RASHES and IRRITATION GALORE. (I haven't taken a picture of it because frankly, I want you to keep coming back to our little blog, and a visual might irretrievably scar the psyche).

45 minute drive back to wound care at 2:00.. when I tell them he's allergic to adhesive.....
I MEAN IT!

After wound care, somewhere along that 45 minute drive back home, I will be finding my friendly neighborhood "wine and spirits" store and spending some serious bucks.

Cheers.

Do You Know What A Pouchkin Is?

It's the thing stuck to the front of my kid, that's what. I'll have to post some pics tomorrow (lil man is finally sleeping). At least for now the $22 tube of "anorectal protectant" is out of commision. The wound care powers that be have decided that a new approach is in order.. imagine that.

We are going from wet and sticky to dry and crusty. Sounds good, I'm tired of oozey and wet anyway.

The new arsenal consists of the "magic powder" called stomahesive, cavilon barrier film spray (sprinkle the powder, spritz the cavilon over it).. and voila! You get instant scab.. pretty cool. It actually creates a dry barrier around the stoma instead of a wet barrier from a cream. Then you layer a thin strip of "dough" (don't ask) directly over the irritated area and the scabby that's just been created. Over that a pouchkin is placed. It's basically a pediatric colostomy bag. It goes over the "dough" and adheres to the belly. This allows the leaky stoma to drain freely into the bag as we wait for it to heal. Just like a colostomy, when the bag fills with gastric drainage we can empty it and measure exactly how much nutrition he is losing, and if all goes well after a period of time (a short one I'm hoping) it will lessen and then stop.

Terri said it already looks as if the tract is regranulating (making new tissue) around the new tube. The last kiddo they had that was "pouched" healed in about three weeks.. Argh.

I did have the bravery to go there and ask what comes next if this doesn't work. She said that the last resort would be to yank this toobie and place a new one in a new site. Cause God knows we really enjoyed the first go round.

Tomorrow I'll take some pics of all our new gizmos and potions. Until then I'm gonna kick back and watch my baby sleep peacefully with his baggy full of dinner juices.. Mmmm.

Next Step

Well, we finally got the tube of barrier cream that the Dr.B ordered for us. If you can get past the bold print across the front of the tube that says "anorectal protectant" it's pretty good stuff really. Apparently this stuff, called Critic-Aid Skin Paste is one of the strongest barrier creams available for people exposed to chronic enzymatic drainage. Yup, that'd be us. Yippee.

Today Dr.B's nurse Brenda called to let me know that V's been referred to the wound care clinic at Arnold Palmer Children's Hospital. That's where Vincentio was born, and where all of his procedures have been done. Frankly, no other hospital in our area has the "cajones" to touch him, but that's alright with me. APH is an outstanding place and I wouldn't want him anywhere else. I spoke with Terri, the wound care nurse today and they want to see him first thing tomorrow. I was afraid that since he's not solely gtube fed that they might put him off.



Three cheers for folks being on the ball. My munchkin's suffered with this long enough. They are conscerned also because he has already shown a weight loss, from 25 down to 23 lbs in the last couple of weeks. I explained to them that altough he eats orally, it's just not enough to sustain him. Terri seems to think they can help. Otherwise we may be looking at some sort of surgical fix. I seriously don't want to have another surgery. His poor belly already looks like a road map and every GI surgery increases the risk for adhesions and blockages to develope. We've already been there and done that.



So, we're off to see Terri tomorrow and I'm cautiously full of high hopes.



Keep your fingers crossed ... and your toes...

Oh, and extra prayers tonight for our buddies L.C. and Jaxson. They are both treading some rough waters lately but I know they'll be alright. After all that extra chromosome brings alot with it.

Do you know what it brings???

Mommies that never give up, that's what!

Tushy Cream and Hard Cider

Ok, it's 1:38 in the morning, and I'm up. Looking at the little hole getting smaller and smaller.....

Wishing I had a tube of preparation H.....

A little birdy gave me the idea to sip a glass of wine, but sadly there's none to be found. I do have a really old bottle of cider from an ages old trip to the smoky mountains. Hmmm...

How long does the fermentation process take? I think I'll find out.

Thinking Small

So we did it this morning. I gave the munchkin some playtime in the shower and pulled out his button. After about 10 minutes I felt pretty sure that all the yummy goodness hanging out in his belly was gone down the drain. I dried him off, rubbed on some lotion, and proceeded to stare at the hole in his tummy.. like a freakin hawk.. for four hours.

It was pretty amazing really, watching it slowly shrink up to a shadow of it's former largeness. Around 2 pm I decided not to tempt fate any longer and popped that sucker back in. All seemed well until he took a good swig of juice and I watched it roll down his tummy and soak the top of his diaper.

*damn*

It is smaller, and the surrounding skin looks a bit less like it's been gone over with a match. So tonight we'll give it another go after he's asleep.
Hopefully we can avoid the GJ button. If it has to be, it's not the end of the world, I'd just like for something to work and be simple.. just once.

He deserves it.

If It's Not One Thing It's Another

Well, we survived the GI appointment today. As soon as Dr. B pulled out his mic-key button, this tall, distinguished, most eloquent of doctors, muttered one solitary word.... "eeeewwww".



That pretty much covered it.



The wound care nurse made a pass through and agreed that the months of placing tighter and tighter buttons has only added to the problem and caused not only irritation, but the beginning stages of pressure necrosis.

Basically, in the effort to stop the stoma from leaking, the pressure has been depriving the surrounding skin from much needed bloodflow. Thus, no healing.

Plus, she also agreed that his current button was waaay to big.

According to her there is really no need for one that large in a child so small unless we're planning on tube feeding him a steak.



During this process, Dr.B allowed Vincentio to hang out with no button in to give the site a rest and let it "tighten"up a bit. After our visit he resized the stoma tract and decided on a 16fr 1.2cm mic-key. He stated after placing it, that he should have to use a bit of pressure to insert it, but he could have.. and I quote.."thrown the mic-key from across the room and still made it in that hole". So, tomorrow, while his belly is empty, we get to remove the button at home for 3-4 hours to let it really close up some.

That, plus a better fitting button, plus the addition of some serious barrier cream. Which by the way, was a pain in the keester to find, and we should have ourselves a fix.

If, after all this, he doesn't show improvement in a couple of weeks we have another option. During his ear surgery, Dr. B could make a short appearance and insert (temporarily) a GJ tube. This would bypass the stomach altogether, sending his formula straight into the intestine. This would allow his skin a break from the leaking and give it a chance to finally heal. Then later, after all is well, he would remove the GJ and go back to the regular G button.



For now I'm ordering the skin paste and keeping my fingers crossed.

Hot Stuff...

First off today, we have more germies. Yup, my lil dude has managed to get infected with some sort of new icky nastiness. An unrelenting fever for two days and the fact that every bit of food that entered his mouth ended up on the floor were my first clues... I'm a quick one... go me.
Doc says she can't see in his ears (go figure), and his throat is super raw so we've added another two antibiotics to the arsenal. The plan is to hopefully eradicate the nasty buggies before his surgery on the 24th.

Sounds like a plan.

Tomorrow we have a work in appointment with GI as well. The button issues we've been having are aggravated by the fact that his last mic-key blew out and that left us with a back up button that doesn't fit.
I finally got someone to listen to my requests to see an enterostomal nurse too. Everyone has been trying to fix his stoma leakage by putting in shorter buttons, but the real problem lies in that the stoma won't heal. Ever since the staph fiasco last year, the stoma has never fully recovered and a raw gaping hole in the gut is never a good thing.
Sooo, they agree that his current button is much too large. They want to size him down all around (french and length). The plan for tomorrow is to pull this hideous monster out of my kids belly, recheck the size of the track, have him evaluated by the wound care nurse, and if all goes well, get him into a button that fits, is usable, and will allow his skin to heal.

Seems do able, right? This all comes at a time when his normal oral intake has dwindled to nothing... Sigh.

We are somewhat used to this dance, normal has never been our strong suit. However, I'm willing to give it a whirl.

Oh, and whoever came up with free medicine flavoring at Target.. we love you. Hey, he may not taste it when it goes in but grape bubblegum sure does smell good.

A few too many.....

This is the name of today's post because that's how the lil man is walking as of late.. like he's downed a few too many if you know what I mean. He's been pretty grouchy and clingy recently, totally not like my boy. Even in heart failure, and with a collapsed lung he managed a smile now and then. He's a tough one, but this past week he's been, well, off.

Apparently lil man's ear tubes have come out.. again. His ear canals are so full of fluid that his balance has taken quite a hit, resulting in my sweet baby boy walking like a drunken sailor.

His temper has taken a similar turn, but I guess if I were walking sideways and falling on my face more than a few times a day I'd be a little off the personality meter too.

So, surgery is scheduled for the 24th and until then I'm just trying to find some fun "sit down" activities. Or I could buy a wee tiny helmet and just let him go.. or not.

Today's Mission.. praying for strength.

I have so many things in my life that keep me incredibly busy, my kids especially. Little man is quite the handful between doctors, and specialists, and therapists, and medical equipment, etc., etc.
As tough as it can be sometimes to juggle it all, I wouldn't trade it for anything. One lesson I have learned and not an easy one at that, is that one day it could all be gone.
This week as we parents have been busily anticipating the last days of school with it's parties and ceremony, one friend of mine is missing her lil man. He's gone, over a year now.. stolen from her.

He was stolen by something insidious, something evil.

He was taken by cancer. A brain tumor. Yes, kids get cancer too.

Julian should have been graduating kindergarten tomorrow, instead, Mimi and her family will be setting the final headstone at his grave.

I try to be upbeat, I try to inject as much humor and light into my days as possible, but in my circle of friends we have lost many. More that I can count on a single hand, or two even. Babies, toddlers, little boys and girls just beginning life.. stolen forever.

It's not fair... and I'm pissed.

I'm angry that one of the sweetest, kindest women I have ever had the priveledge to know will be standing at her son's grave tomorrow, watching the cold hard reality placed there to show all the world that her sweet boy lies beneath it. www.carepages.com/carepages/JuliansWorld.

Just the thought of it makes me lose my breath.

Yea.. I'm pissed.

The Unlucky Few

To answer your question Lacey.. uh, no.
This is also not our first run in with the g tube nasties, so is the life of raising a kid who is somewhat immuno - compromised.
Last time it was staph, and we spent 10 days inpatient on IV antibiotics.
At least this go around we've fared a little better. A serious, hard core antibiotic at home, and an immediate trip to the ER if like last time, the line of infection on the skin makes a bee line for his heart. Last time it was already headed there and it bought us an immediate admission, so, all in all still better than last time.. so far.

However...


You're all lucky my camera has dead batteries cuz there's some gunk under my kids elmo shirt that's just jonesing for it's 15 minutes of fame.

It is, in the words of a former intensive care nurse ...... icky.

Now after a trip to Walgreens and the purchase of some sterile saline burn pads for the oh so yucky gaulding around the lil man's mickey,
he... is.... out.

Thanks for the love.

Excuses Excuses...

Sorry for the lapse in updates, but it turns out the munchkin has a full blown g tube infection. Fever, bloody pus, the works.
The last few days have been a real joyride. If you like bloody pus, that is. Personally... not so much. Especially when it's oozing out of one of my kids.
Tomorrow the emergency room beckons I'm afraid. My valiant efforts to vanquish the nastiness on my own has failed miserably. There's only so much ooze I can allow my baby to suffer without professional intervention.
Sooo.. first thing in the a.m. we'll be off. Keep you posted.
Until next time.....