I haven't forgotten...

Sorry I haven't posted our Thanksgiving pics yet. I still haven't uploaded them from my camera.
Everyone here is still feeling crummy, I can't wait till this passes. Every bone and joint hurts.. ugh.

Lil V is definitely NOT himself. Usually he's pretty spunky and constantly on the move lately, but this past week he's been anything but.
Several times a day I look for him only to find him laying flat out on the floor. Yesterday he was doing one of his favorite things, emtying out the bottom of the refrigerator. When I went to pull him away I found him laying on the floor surrounded by all his loot, nearly asleep. Definitely NOT like my little troublemaker.

As sson as I can take a deep breath without coughing up a lung I'll get our pictures on here. We did manage to have a really nice Thanksgiving and I can't wait to share!

Not so bad after all... who knew???

Happy Thanksgiving everyone, we hope you all had a fabulous holiday.
To be honest I was really nervous that today wouldn't go well. This side of our family is notorious for their "bar room brawling" type of mentality.

Tends to make for touchy family gatherings.

But today went way better than I had ever anticipated. There was one family member who showed up as dinner was finishing up and attempted to start an argument at the dinner table over the fact that there was no more pumpkin pie (seriously).
After a very short time he was asked to leave which he did... whew.

Other than that it was really pretty uneventful. Everyone worked together (woohoo) to make a nice holiday dinner for a house full, and I do mean full. There had to be thirty people there!

So, the sheriff's department got the night off, and we had a really nice dinner. The kids ran around being crazy and having fun and the adults got to spend time together for once in some peace.

You have NO idea how thankful I am for that!

p.s. I did get some cute pictures of our day, I'll post those when I get them off my camera.

Moving in the right direction...

Well, today has brought some ups and downs, but for the most part everyone seems to be feeling at least a little better.

Ryan's prednisone is finished (thank God), I love my kids on steroids!
He's still on the nebulizer treatments morning and night with albuterol and the flovent inhaler. He also gets claritin daily for some skin related allergies. The combination seems to be working so we'll keep it up. X ray's today were negative for any infection, but I did get that ominous "you need to see his doctor this week for the full report on his films". Love that.
We'll see her tomorrow morning so we can get that out of the way before the holiday just in case we need to change any of his meds.

Little V man is still fairly sputtery and doesn't have much of an appetite, but we have g toobie backup so i'm not overly worried about that. Usually he loves mealtime. Sometimes I think it's more about the social experience for him, but he likes his food too!
Seems like no matter how much he gets in though it's never enough. All he has to do is miss out on a couple of Pediasure feeds and his weight starts to plummet.. go figure?

Ah well. He's still on the breathing treatment too. Albuterol and pulmicort for now. We have the pulse/ox here so if need be we can use some supplemental O2, but he's still hanging at the lower end of normal. That in itself gives me more peace about him being sick. Usually, if it's the start of someting serious his sats drop way low even before the major symptoms hit and i'm not seeing that yet, so I think we're just dealing with a run of the mill case of the snots.

I do want to thank you all for the love and wish everyone a Happy Thanksgiving!!!

Now for my holiday wish...

Some of you may know that the bulk of our close family is Hawaiian, living in Kauai, so we unfortunately won't be with them for Thanksgiving.
The family we do have here is, how can I put this delicately, um, wildly dysfunctional.
Imagine a house full of loud, overly opinionated Italian rednecks...

I'm just hoping we can get through the holiday without any intervention from local law enforcement.
#1 because i'm tired of blazing lights coming down our drive, and..
#2 because I have no money to spend for bail. Seriously.

... wish us luck :)

And the snots go marching...

Right to the next unsuspecting munchkin.

That's right, my little guy is wheezing and sputtering. Huffing like a friggin freight train going uphill, and that's when he's sleeping. His sats are hanging at the precarious point, especially when he sleeps, but so far we're still dodging the need for O2. Not sure how long that'll last though if this keeps up much longer.

The rest of the day he barks like a congested seal with a reactive airway disease. Sounds about as pretty as it is. So we've now added a twice daily Pulmicort neb to our mucous blasting aresenal of bronchodialators and steroids.

Here's to hoping it works.

The doctor calls it "phlegm" but to me it's still just snot.

How's that for a lead in???

Well it's happened. My ONE healthy kid is no more. A few months ago Ryan started with a nagging night time cough. Lately it's progressed to a full blown snotty pukefest nearly every night.

No sleep, irritable, ready to snap.. and that's just me. Ryan's worse.

So we gave in and headed to our friendly neighborhood pediatrician Dr R.
She sems to think that Ryan is becoming asthmatic, considering the symptoms combined with his exam and our oh so healthy (not) family history.

So we went home with a script for a chest xray, flovent, albuterol, and prednisone.

yay.

There's no school next week because of the holiday and my normally turbine driven, go flat out, has to constantly be moving six year old is now on steroids.

..... pray for me. please.

I does seem to have helped though. In the past 48 hours his respiratory symptoms have done a complete 180. He's slept for the last two nights (hallelujah) and had no major hacking during playtime, so I guess it's worth the craziness I'm very sure is coming.
Fortunately the prednisone is only for a week at this point. The flovent and albuterol are long term. No big deal in the grand scheme of things I suppose. Just one more reason to Love Love Love my girls at the pharmacy for being so on top of our needs.

I did have to turn down Dr R.'s very polite offer for a nebulizer and aerochamber.

We already have three... *sigh*

Whatever it takes :)

Frustration with the granulation

Say that five times really fast...

So this granulation business is really getting old. V's first attempt at a g tube was a multiple disaster so I really don't know how long the granulation tissue is supposed to hang around in a "normal" stoma.

... i just wrote "normal"....

he he.

A few weeks ago I finally burned off the last of it with some silver nitrate, and now it's back with a vengeance.

When you look at his stoma, the worst of it is on the left side. It's something like a big red sticky flesh donut.

We have the big guns steroid cream and that helps but I don't like to use it too much. Steroids can be tricky. Helpful in the right amounts, and hurtful if you use too much. Too much can actually cause the skin around the stoma to thin. Something we definitely don't want.

So silver nitrate has become by backup crutch. Fortunately if I wait till he's asleep and dab it gently he never even flinches, but the idea of gently dabbing something on my baby that comes out of a package with a skull and crossbones on it that says POISON in big red letters, just doesn't make me feel all warm and fuzzy about using it.
Then after a couple of days it comes back!!!

I'm still experimenting with the holistic approach. I've gotten alot of advice on essential oils and creams but i'm reaching the desperation point here.

Don't get me wrong, i'm more than excited to be on the "normal" side of things. I'll take this problem anyday over what we dealt with before, but big fleshy skin donuts be damned!!!

... ok I feel better now :)

Urgh...

Thanks for the love...

... now i think maybe an expectorant to fight off the ick ...

I thought long and hard about the nettie pot suggestion, It's a good idea really, it's just that i don't think i'm that brave.

I worked in a hospital for four years, i've treated bed sores, parasites, major ick of every shape and size. But the one thing that can bring me to the verge of spewage quicker than anything???

Mucous. Yours, mine, anyone's within earshot of the gurgle.

I know i'm weak :)

(thank God V's never needed a trach)

I'm getting...

... sick ... ugh ...

... hate. being. sick ...

... sore throat ... mucous overload ...

haven't quite reached the "glazed donut "phase, but i'm workin on it ...

... i need a lozenge.

Frustrated and standing still

Grrr.. I'm having trouble getting V back into therapy. He's been out of his regular PT/OT and speech therapy for months due to all the feeding tube problems he was having. He was so sick and weak from malnutrition that he could barely stand on his own for the longest time before this last surgery.

That's why I finally pressed for the surgical revision of the site. I think a year and a half of trying to stop the profuse leakage from his original site was enough (not to mention the repeated infections and intense pain from skin breakdown), and fortunately so did his GI doctor. But by the time they really got down to business he was so depleted it was rediculous.

There was no way he could have participated in any type of active therapy.

In a way it happened at the perfect time (if there is such a thing), because financially we were having trouble coming up with the gas money to get there and NO ONE wants to come out here to our house. Can't say I really blame them. We're not in an easily accessible area and there's no room in here to allow for much anyway. Going to them is really the best option for us.

Now that V is over his last (I hope) g tube surgery and is healing well I want to get him back into therapy but nobody will return my calls or emails. His therapists have always been very accomodating and wonderful to us, it's just that I can't seem to get a response from ANYONE.

Ugh. Just venting today, and hoping somebody returns my emails soon. My kiddo needs services and when he couldn't participate they were all over us. Now that he's ready.. where is everyone???

Four Years Ago...

It was four years ago, November 7th 2005, that I waited with a mix of blinding fear and utter relief coursing through me. It was this on this day, at 5:00am that we sat in the Special Care Unit counting down the final moments before V would be taken for his life saving heart repair surgery.

We couldn't easily hold him because of all the wires that were hooked to his tiny body. He was barely 5 pounds. At one point I took off his clothes so we could get some final, scar free pictures of his little body. Those moments, at 7 weeks old, would be the last that he ever spent free from scars. From that day forward every few months they would be cutting into him for one reason or another. Four years later that hasn't changed.

Around 7am they took him. We got to carry him down the hall to the surgery suite and kiss him goodbye one final time. One final time, as a child fighting to breathe, to eat, to move blood and oxygen through his body. Fighting to live. We hoped with everything we had that when he awoke it would be to a new life.

There were many fears. Not just for his heart, but for his blood, his bone marrow to come back clean. They were aspirating a sample from his sternum when it was cut to reach his heart. They feared he may have leukemia. That day they were fighting to win one battle, but would we win the rest of the war?

The heart surgery would take hours, but the marrow would take two weeks. It might as well have been forever...

Hour by hour they updated us. His chest is open... His sternum is open... The marrow has been collected... He is on bypass...

The repair is complete... He is off bypass and his heart is beating...

When we saw him in the ICU we were both shocked and relieved. He looked horrific and beautiful all in the same breath.

His repair went well and they were very hopeful. Two weeks later his marrow came back clean.

For now...

We were advised that due to a blood disorder he was born with in combination with the increased risk from having Down Syndrome, that V's chances of developing cancer in his lifetime were very high. But for now we were winning.

You all know the rest.. For now we are still winning...

Happy Heart Day baby.

I'm Baaaack!

Well, I learned the lesson this past week that I should have braved the toothache pain along with it's drug induced giddiness and posted Halloween pictures. This would be because two days later on November 2nd, Ryan turned 6 and in my Happy Birthday picture frenzy I made a horrible mistake....

... I erased the Halloween pictures! Aaahhhhh!

Way to go supermom.

So instead of the cuteness of my runchkin sporting some serious leather and a hefty number of temporary "biker" tattoos and Ryan as "super Spidey" with rippling muscles of foam....

I have nada. I suck.

I did manage to keep Ryan's birthday pictures with all the kiddos (and cousin Jessi), and get a few more recent one's of V sampling Big Daddy's hunting gear.

Therefore I leave you with a new level of cute.

Oopsey!

Waited too late in the day to do Halloween post...

Bad toothache pain...

Weeeee bit high on pain pills.....


Halloween cuteness forthcoming :)
(as soon as I can focus on the keyboard).