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.
Tuesday, June 30, 2009
Monday, June 29, 2009
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.
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.
Friday, June 26, 2009
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.
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.
Monday, June 22, 2009
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!!!
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???
Saturday, June 20, 2009
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.
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.
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