Sorry I've been neglecting my poor blog lately. Ever since Christmas Eve I've been fighting some kind of relentless monster bug.
The kids had a pretty good Christmas overall, and even got a Wii shipped with lots of love and packing peanuts from Nana all the way from Hawaii!
They have had a blast (V can even play!) and it's been a nice distraction for them while I try to kick this nastiness settled into my chest.
We got lots of pictures, and as soon as I feel better I'll upload them for everyone to see.
Until then...
cough.. cough.. gag!!!
Monday, December 28, 2009
Monday, December 21, 2009
We did it.
Well the EEG excitement is over for now. We had a super wonderful night last night trying to keep V from getting too much sleep. That combined with not being able to eat was a real treat, to say the least, but we made it.
When we arrived at the hospital this morning I was fully expecting that he would readily konk out, but true to form my boy has to do it in his own way. They gave him the chloral hydrate and half an hour later he was still bouncing off the walls. It took two of us to corrall him into a comfy spot and lull him to sleep.
After that things moved along pretty quickly. He was hooked up and they started the sleeping portion of the test. He didn't move at all during the scan except for rolling over once which they marked on the machine a movement. Other than that I'm fairly clueless as to EEG waveforms and what it all means. He did register numerous spikes that showed up during the 20 minutes he was sleeping. Not sure exactly what that means though. The neuro doc won't read the report for another day or two since the test wasn't written as a stat EEG, so I guess now we wait.
The only real casualty of the day was his attitude. Apparently V and chloral hydrate don't make a happy pair. The tech warned me that he would probably seem kind of "drunk" from the sedation for a few hours, but no drunk here, unless they meant a crabby drunk.
After we got home he proceeded to angrily stuff a handful of potato chips in his mouth, yell and grump, then he got a nice warm bath to wash the goo out of his hair. Now he's not so happily bathed, lotioned, and laying in the playpen getting a Pediasure feeding and giving Mommy a break.
... tomorrow is cardiology. Hopefully. Not. With. Sedation.
Wednesday, December 16, 2009
One Down...
Neuro went well today, besides the hour and a half we had to wait for our appointment. In the end we did find that although the wait was excessive, the doctor seems to be very thorough. He took V's history and we had a long talk about the episodes he is experiencing. The final result was a script for an EEG to be done next Monday at APH... can you feel my excitement???
Apparently my 16 hour a night sleeper of late can only have 4 hours of sleep the night before (yipee)!
He cannot eat for 8 hours before (in case he has to be sedated for the sleeping portion of the EEG).
And.... I must make sure his hair is clean and neat (shouldn't be a problem).
Apparently my 16 hour a night sleeper of late can only have 4 hours of sleep the night before (yipee)!
He cannot eat for 8 hours before (in case he has to be sedated for the sleeping portion of the EEG).
And.... I must make sure his hair is clean and neat (shouldn't be a problem).
Here we go.....
We saw endochrinology on Monday, according to Dr. J his growth hormone levels and binding proteins are both at the very low end of normal. She was very impressed that he still seems to be growing well height wise despite it. She did say that both of those levels can be affected by nutritional status. Considering V's naughty stoma that led to his nutritional misadventures over the summer, that could possibly be the culprit. Even though it's now December, he's still playing catch up. She's not too worried. She gathered a little more information regarding the "episodes" we're investigating now, and she wants to look into the possibility that something may be off with his cortisol levels if our other doctors visits this week don't show anything conclusive. Several years back I had some major problems with my cortisol levels in relation to my lupus.So wish us luck. Tomorrow is V's first neurology appointment. Hopefully we'll go in and find that it's nothing, that his "episodes" aren't seizure related. The alternative that it may be another heart issue isn't exactly an appetizing thought either, but we'll take it one specialist at a a time and hope for the best!
Sunday, December 13, 2009
It's like starting over...
First I want to thank you all for your kind words regarding my last post. To be honest I wasn't sure I should post about it. I've gotten so used to keeping it a private matter for so many reasons, sharing was kind of scary. I have just been so overjoyed in our newfound contact.
My William has a career in technology knocking at his doorstep, I'm sure of it. He got through some pretty sophisticated stuff to contact me. I am so proud of him. Both of them!!!
Justin, my now 13 year old (he was 8 1/2 when we were last together) has been a bit more shy and reserved. Thay have been through alot and he has some serious trust issues to work through. They were basically brainwashed into thinking that I didn't want them back. That I had sent them away. Fortunately William was old enough to know that it wasn't true. He is 16 now, he was 12 then. He's working on helping his brother understand what has happened. It's going to be a long, slow journey I'm afraid, but it's all worth it if it means that I can finally have all my children together again.
I just thank God that we found each other. They are still up north right now. There is alot to be worked out, but I talk to them often and we'll be exchanging more pictures soon.
Believe me, I'll be showing them off too!
As for the V update, we did finally get his bloodwork done Friday night. We had to go down to APH and have the NICU team draw him. They were wonderful with him and in the end it took an hour and a half, but they got it. They found a couple of halfway decent sites to draw from, but the blood had to be coaxed out of his veins. I'm just glad it's done.
Now we have Endo on Monday, then Neuro on Wednesday. Next week on the 22nd is his Cardiology appointment. Hopefully one of them can give us some answers to explain his "episodes", plus he's taken to sleeping anywhere from 14 to 16 hours overnight. He's always been a great sleeper but that's kind of excessive even for him!
A huge part of me hopes that we're just overreacting, or that maybe he does just have a virus or something, but my logical thinker knows that a virus wouldn't be holding on this long.. we'll see.
My William has a career in technology knocking at his doorstep, I'm sure of it. He got through some pretty sophisticated stuff to contact me. I am so proud of him. Both of them!!!
Justin, my now 13 year old (he was 8 1/2 when we were last together) has been a bit more shy and reserved. Thay have been through alot and he has some serious trust issues to work through. They were basically brainwashed into thinking that I didn't want them back. That I had sent them away. Fortunately William was old enough to know that it wasn't true. He is 16 now, he was 12 then. He's working on helping his brother understand what has happened. It's going to be a long, slow journey I'm afraid, but it's all worth it if it means that I can finally have all my children together again.
I just thank God that we found each other. They are still up north right now. There is alot to be worked out, but I talk to them often and we'll be exchanging more pictures soon.
Believe me, I'll be showing them off too!
As for the V update, we did finally get his bloodwork done Friday night. We had to go down to APH and have the NICU team draw him. They were wonderful with him and in the end it took an hour and a half, but they got it. They found a couple of halfway decent sites to draw from, but the blood had to be coaxed out of his veins. I'm just glad it's done.
Now we have Endo on Monday, then Neuro on Wednesday. Next week on the 22nd is his Cardiology appointment. Hopefully one of them can give us some answers to explain his "episodes", plus he's taken to sleeping anywhere from 14 to 16 hours overnight. He's always been a great sleeper but that's kind of excessive even for him!
A huge part of me hopes that we're just overreacting, or that maybe he does just have a virus or something, but my logical thinker knows that a virus wouldn't be holding on this long.. we'll see.
Friday, December 11, 2009
Bear with me...
I'm kind of going out on a limb here, emotionally what I'm about to write has been a very difficult subject. Not one I have openly discussed. Partly because my journey with this needed to remain private for reasons I cannot explain. Also because it's just plain painful.
Four years ago, shortly before V's birth my two oldest children went for a visitation with their father up north. They were meant to stay with him for the last couple of weeks during the summer of 2005 and return home before the start of school. I took them to the airport and put them on a plane with every intention that in a matter of weeks they would be home.
I never saw them again.
The whole experience isn't one I care to relive in writing at the moment, but to sum it up, their father stole them from me.
In the midst of dealing with V's many medical and health issues over the last four years, I have been waging a war. A war to bring my boys back home. I finally made contact with my oldest son, well, he was able to make contact with me. Apparently in the past four years my shy, quiet boy was becoming quite the technical genius. HE found me...
I still had no ability to get to them at the time and no idea other than William's (my oldest) verbal description of what my two boys had become. Today, for the first time in four years I received an email containing a picture of my children.
I know this is probably not what any of you expected to read, honestly, it's not something I ever expected to post about. Up until now it's remained a very personal and private fight.
But today... today I can't stop smiling. I can't stop crying.
More than anything, I can't wait to hold them again.
Monday, December 7, 2009
Pictures!!!
I finally did it! I uploaded the Thanksgiving pictures!!! The first one is the best homemade mango salsa EVER.. the pies in the background turned out pretty darned good too. There were pecan pies behind those.. yum!
V (Vincenz as he's called at home) with Ryan and sissy Alissa. Kalei was being a bugger and decided to stay at her Mom's the whole day... boooo :(
This is a pic of our oven baked bird. The biggest one with all the stuffing inside! The other two were smaller, but only because we had to fit them into the fryer outside. They were injected with cajun butter and fried in peanut oil. Ooohhhhh.. good.
That's Ryan smoochin for the camera.
That's me, V, and Ryan behind aunt Kelli and her macho man Caleb. He's 6 months old and weighs almost as much as V!
Ha! Ha! Daddy and V along with goofey cousin Colby :)
More V perched happily on Daddy's head!!
So there's just a few of our Thanksgiving day beauties. Sorry it took so long to get them up. I seem to get sidetracked so easily these days.
V (Vincenz as he's called at home) with Ryan and sissy Alissa. Kalei was being a bugger and decided to stay at her Mom's the whole day... boooo :(
This is a pic of our oven baked bird. The biggest one with all the stuffing inside! The other two were smaller, but only because we had to fit them into the fryer outside. They were injected with cajun butter and fried in peanut oil. Ooohhhhh.. good.
That's Ryan smoochin for the camera.
That's me, V, and Ryan behind aunt Kelli and her macho man Caleb. He's 6 months old and weighs almost as much as V!
Ha! Ha! Daddy and V along with goofey cousin Colby :)
More V perched happily on Daddy's head!!
So there's just a few of our Thanksgiving day beauties. Sorry it took so long to get them up. I seem to get sidetracked so easily these days.
Just to follow up, V has his neurology appointment on the 16th, and cardiology on the 22nd.
We have attempted twice now to get his bloodwork done and no one can get blood out of my kid! It's very depressing, I hate him having to get poked and then it's all for nothing... sigh. Maybe the third time will be the charm. We're going back down to Arnold Palmer this time to let the NICU nurses give it a go. Wish us luck.
He's had a good couple of days, we haven't seen any "episodes" so that's encouraging. Makes the wait for his appointments less frustrating.
Still... you know my munchkin. He loves to keep us guessing so I'm definitely not letting my guard down, but it's nice to have some good days :)
Friday, December 4, 2009
Need some advice.
So I've been a little sidetracked the past week or two trying to get over the crud I can't seem to shake, so when V started feeling kind of down I figured it was the same thing.
The thing is that he seems to be fine a large portion of the day, then right in the middle of whatever activity he's involved in, he has to lay down. We didn't really make too much of it at first but then we noticed that he seems to be doing it more often, and at inappropriate times. Right in the middle of playing he will simply stop, lay on the floor, and stay there for several minutes. Sometimes he will nap a little after, but mostly he gets back up and goes about his play when he's ready.
His GI doc noticed the behavior at Mondays visit and urged us to go to our pediatrician.
When we arrived in the office, to be honest I was kind of afraid we were making too much of it. I mean when he's up, he's fine.
The whole wait time in the office he wouldn't settle down. I started to feel like I was just wasting her time. I strapped him into the stroller and gave him a book which he busily started working through the pages of when I noticed he was very quiet.
I looked over and his head was down on his shoulder, his lips had gone very pale, and he was not moving AT ALL.
I reached over and brushed his cheek and he looked at me and smiled. Then he layed his head back down again. A few minutes later he was back up and running.
WTH???
Dr. R went through all the "episodes" with me and the symptoms he has. She was initially worried about seizures, but he never goes limp or spaces out. He purposefully lays down and he will make eye contact. He doesn't go limp or spastic at all.
When I assured her of this she began leaning toward the possibiity of a cardiac arrhythmia. It would explain why he is so seemingly fine one minute, then down the next. Arrhythmias can cause a sudden feeling of weakness and dizziness. It would account for his need to lie down for several minutes at a time.
UGH...
We had to put off the bloodwork until tomorrow, but she wrote for a bunch. She thinks that if it were related to a deficiency in his counts though, that he would feel like that all the time and he definitely doesn't. It's weird.
We have tons of experience dealing with heart failure and such but this is uncharted territory.
Dr.R is going to set him an appointment with a neurologist just to be safe, and cardiology to check on the possible arrhythmia.
I'm just wasted tonight. Every time things seem like they're smoothing out he gets hit with something new.
Has anyone dealt with this type of issue with their children?
The thing is that he seems to be fine a large portion of the day, then right in the middle of whatever activity he's involved in, he has to lay down. We didn't really make too much of it at first but then we noticed that he seems to be doing it more often, and at inappropriate times. Right in the middle of playing he will simply stop, lay on the floor, and stay there for several minutes. Sometimes he will nap a little after, but mostly he gets back up and goes about his play when he's ready.
His GI doc noticed the behavior at Mondays visit and urged us to go to our pediatrician.
When we arrived in the office, to be honest I was kind of afraid we were making too much of it. I mean when he's up, he's fine.
The whole wait time in the office he wouldn't settle down. I started to feel like I was just wasting her time. I strapped him into the stroller and gave him a book which he busily started working through the pages of when I noticed he was very quiet.
I looked over and his head was down on his shoulder, his lips had gone very pale, and he was not moving AT ALL.
I reached over and brushed his cheek and he looked at me and smiled. Then he layed his head back down again. A few minutes later he was back up and running.
WTH???
Dr. R went through all the "episodes" with me and the symptoms he has. She was initially worried about seizures, but he never goes limp or spaces out. He purposefully lays down and he will make eye contact. He doesn't go limp or spastic at all.
When I assured her of this she began leaning toward the possibiity of a cardiac arrhythmia. It would explain why he is so seemingly fine one minute, then down the next. Arrhythmias can cause a sudden feeling of weakness and dizziness. It would account for his need to lie down for several minutes at a time.
UGH...
We had to put off the bloodwork until tomorrow, but she wrote for a bunch. She thinks that if it were related to a deficiency in his counts though, that he would feel like that all the time and he definitely doesn't. It's weird.
We have tons of experience dealing with heart failure and such but this is uncharted territory.
Dr.R is going to set him an appointment with a neurologist just to be safe, and cardiology to check on the possible arrhythmia.
I'm just wasted tonight. Every time things seem like they're smoothing out he gets hit with something new.
Has anyone dealt with this type of issue with their children?
Sunday, November 29, 2009
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!
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!
Thursday, November 26, 2009
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.
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.
Wednesday, November 25, 2009
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 :)
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 :)
Sunday, November 22, 2009
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.
Saturday, November 21, 2009
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 :)
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 :)
Wednesday, November 18, 2009
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 :)
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 :)
Tuesday, November 17, 2009
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)
... 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.
... 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.
Friday, November 13, 2009
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???
Sunday, November 8, 2009
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.
Friday, November 6, 2009
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.
Sunday, November 1, 2009
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).
Bad toothache pain...
Weeeee bit high on pain pills.....
Halloween cuteness forthcoming :)
(as soon as I can focus on the keyboard).
Saturday, October 31, 2009
Just one more "bump"...
This one isn't about V thank goodness, but it is about Daddy. You see daddy has a condition called peripheral neuropathy. His uber efficient doctor (not) still has NO clue as to where this has come from.
Lately in addition to his numbness and pain, he's been having bouts of breathlessness and becoming very overheated. Tonight he made an impromptu trip to WalMart for some nighttime goodies around 9pm. At 10:30pm I was getting pretty worried, and by 11:15pm when he pulled in the driveway I was darn near frantic.
Turns out he got way overheated and lost his breath so he sat down on a bench and proceeded to PASS OUT!!!
The manager and assistant manager wanted to call him an ambulance but my hard headed man rested a bit and chose to get his goodies and drive himself home!
Keep in mind we live in the middle of NOWHERE.. so if he hadn't of made it home we would be literally up a creek....
*sigh*
Well, outside of knocking him out myself and driving him to the ER, I'm hoping we get a good night's sleep and all is better tomorrow.
I love not having insurance....
Barring any major disaster, stay tuned for super cute halloween photos to come (picture me crossing my fingers).
Lately in addition to his numbness and pain, he's been having bouts of breathlessness and becoming very overheated. Tonight he made an impromptu trip to WalMart for some nighttime goodies around 9pm. At 10:30pm I was getting pretty worried, and by 11:15pm when he pulled in the driveway I was darn near frantic.
Turns out he got way overheated and lost his breath so he sat down on a bench and proceeded to PASS OUT!!!
The manager and assistant manager wanted to call him an ambulance but my hard headed man rested a bit and chose to get his goodies and drive himself home!
Keep in mind we live in the middle of NOWHERE.. so if he hadn't of made it home we would be literally up a creek....
*sigh*
Well, outside of knocking him out myself and driving him to the ER, I'm hoping we get a good night's sleep and all is better tomorrow.
I love not having insurance....
Barring any major disaster, stay tuned for super cute halloween photos to come (picture me crossing my fingers).
Tuesday, October 27, 2009
Letters To God...
Sorry for the lapse in updates lately. To be honest I've been "experiencing" Facebook for the first time, and I've become a bit of an addict.
I can't believe how many people I have come back in contact with in the last few days...
Well, one thing that I found out today I wanted to share. When V was in Arnold Palmer Hospital during the summer they were filming a movie in the main lobby. Our wound care nurse explained that it was a movie about a child fighting cancer, a brain tumor. We sat and watched for a time and went on our way..
I never knew anything more about it until today. A friend posted a link to the movies website. It's finally finished production and is scheduled for release in early 2010. It was filmed at several locations including APH and Give Kids The World complex that houses children and their families during Make-A-Wish trips.
And unfortunately, it's based on a true story. The story of the filmmakers child Tyler. It is called "Letters To God".
PLEASE, PLEASE go check it out.. and spread the word!
www.letterstogodthemovie.com
I can't believe how many people I have come back in contact with in the last few days...
Well, one thing that I found out today I wanted to share. When V was in Arnold Palmer Hospital during the summer they were filming a movie in the main lobby. Our wound care nurse explained that it was a movie about a child fighting cancer, a brain tumor. We sat and watched for a time and went on our way..
I never knew anything more about it until today. A friend posted a link to the movies website. It's finally finished production and is scheduled for release in early 2010. It was filmed at several locations including APH and Give Kids The World complex that houses children and their families during Make-A-Wish trips.
And unfortunately, it's based on a true story. The story of the filmmakers child Tyler. It is called "Letters To God".
PLEASE, PLEASE go check it out.. and spread the word!
www.letterstogodthemovie.com
Saturday, October 24, 2009
I Found IT !!!
Well, I finally found it. And I wasn't totally crazy, the reason I couldn't find it in this tiny little trailer is because it wasn't in here. That's right, I lost it somewhere else.. another 10 feet away in the truck. Go me.
Anyway, it's back. So guess what I have for you tonight ???
Pics of my little wild man Ryan, not so wild and feeling kind of rotten.
This was from earlier this week in the aftermath of the blue Cheeto craze!
And yet again little munchkin protests his time in the lockup.
Anyway, it's back. So guess what I have for you tonight ???
Pics of my little wild man Ryan, not so wild and feeling kind of rotten.
This was from earlier this week in the aftermath of the blue Cheeto craze!
And yet again little munchkin protests his time in the lockup.
Monday, October 19, 2009
Not Much... except Cheetos.
Not much is right, it's been blissfully uneventful the past few days. I would love to entertain everyone with some super cute pics of the V man, but I cannot find my camera.
*sigh*
How the heck you can lose a camera in a 26 ft trailer I just do not know. There's barely enough room in this thing to breathe let alone lose anything! But I guess if it can be done...
... it would happen to me :)
Hopefully our treasure hunt will produce something. I've always complained that it took crappy pictures, but at least I could take some. That'll teach me to complain, right?
When I do find it I'll have to show you all a picture of our latest find... color changing Cheetos.
They turn your mouth blue when you eat them! After a few my munchkin looks like he's pulled a dracula on a fountain pen!
AAhh, that's going to be my challenge to a certain stumpy little cutie we like to call Miss Pudge (Yes I mean you LC).
Tell your Mama to go to the store and buy you and Daddy some color changing Cheetos.
I bet that'll be some photo shoot.
*sigh*
How the heck you can lose a camera in a 26 ft trailer I just do not know. There's barely enough room in this thing to breathe let alone lose anything! But I guess if it can be done...
... it would happen to me :)
Hopefully our treasure hunt will produce something. I've always complained that it took crappy pictures, but at least I could take some. That'll teach me to complain, right?
When I do find it I'll have to show you all a picture of our latest find... color changing Cheetos.
They turn your mouth blue when you eat them! After a few my munchkin looks like he's pulled a dracula on a fountain pen!
AAhh, that's going to be my challenge to a certain stumpy little cutie we like to call Miss Pudge (Yes I mean you LC).
Tell your Mama to go to the store and buy you and Daddy some color changing Cheetos.
I bet that'll be some photo shoot.
Wednesday, October 14, 2009
Keep Reading.. It's a Two for One!
Well I missed my post for last night, poor little scooter slipped by the kitchen table and bit down on his tongue. Hard.
There was blood EVERYWHERE. It took quite a while to get him calmed down and cleaned up.
A futile measure really. Every time I looked over at him for about the next three hours his mouth was oozing blood.. ugh.
It's tough to deal with a cut in the tongue. Holding pressure sure is hard, and keeping little fingers out afterward is down right impossible.
Daddy finally figured out a way to pucker him up and get the bleeding to stop. He sprayed his tongue with sour spray candy. Even I was impressed.
He's alot better today, although his tongue still looks pretty gross when he sticks it out. But at least it isn't bothering him much anymore.
---------------------------------------------------------
Lacey from Jaxson's Fight tagged me the other day to tell how my kids got their names so here you go :
My oldest William Lee, is now 16. When we first found out I was pregnant we never really talked much about girl names. I don't know why, but we had settled very quickly on the name Justin. When my ultrasound confirmed a boy, we were very excited. That evening we decided to tell my ex-husband's family about our "boy" when his Mom called to tell us that his grandfather had been taken to the hospital after suffering a stroke at home. They weren't sure he was going to make it. We rushed to the ER just in time to say goodbye. We never even got to tell him our news. His grandparents had raised him, and his loss hit him hard. That evening he asked me if we could name the baby after his grandpa "Bill", William.
As far as the Lee, that was for my ex-husband's middle name.
Our next son was obviously going to be our Justin. He's now 13.
His middle name is also Lee. My Mom used to joke that we just weren't all that creative, but really it's because my Dad's middle name is Lee too.
Now on to my younger set...
Ryan Thomas was my third boy, he's now 5 (almost 6) and Daddy came up with his first name. It was from one of his favorite radio DJ's children. His son's were named Ryan and Gage.
Thomas was my idea, I had always loved the name Thomas. Don't really know from where. Maybe all the Magnum PI episodes my older brothers made me watch as a kid.. "Thomas Magnum". That's the only Thomas I ever really knew of. Good looking, charismatic, what wasn't to like? Ryan Thomas just seemed to flow.
Now Vincentio, that's a whole other story. We could NOT think of a name for this kid. We couldn't agree on anything. Daddy is half Hawaiian and half Italian so we started looking through name books. His oldest daughter had been given a Hawaiian name, Kalei (pronounced kah-lay) so we thought that the youngest should have an ethnic name as well. We looked through half a dozen Hawaiian name books and just couldn't find anything we could agree on and the male Hawaiian names in his family are VERY hard to pronounce so we didn't want to go there.
We started looking at Italian names on the internet when I went into premature labor. Two days after he was born we were still looking (ha). With all the hubbub going on with his DS and heart diagnosis, my older boys took on the task of looking for a name.
On the third day after he was born, my boys called me at the hospital and announced that they had found the name Vincentio on an Italian name website.
It is a derivative of Vincent, the conqueror. It sounded exactly like the strong name our little munchkin needed. As for his middle name Albert, that is for Daddy's grandfather who raised him and my paternal grandfather who died when I was young. The only one of my grandparents I was ever really close to.
There was blood EVERYWHERE. It took quite a while to get him calmed down and cleaned up.
A futile measure really. Every time I looked over at him for about the next three hours his mouth was oozing blood.. ugh.
It's tough to deal with a cut in the tongue. Holding pressure sure is hard, and keeping little fingers out afterward is down right impossible.
Daddy finally figured out a way to pucker him up and get the bleeding to stop. He sprayed his tongue with sour spray candy. Even I was impressed.
He's alot better today, although his tongue still looks pretty gross when he sticks it out. But at least it isn't bothering him much anymore.
---------------------------------------------------------
Lacey from Jaxson's Fight tagged me the other day to tell how my kids got their names so here you go :
My oldest William Lee, is now 16. When we first found out I was pregnant we never really talked much about girl names. I don't know why, but we had settled very quickly on the name Justin. When my ultrasound confirmed a boy, we were very excited. That evening we decided to tell my ex-husband's family about our "boy" when his Mom called to tell us that his grandfather had been taken to the hospital after suffering a stroke at home. They weren't sure he was going to make it. We rushed to the ER just in time to say goodbye. We never even got to tell him our news. His grandparents had raised him, and his loss hit him hard. That evening he asked me if we could name the baby after his grandpa "Bill", William.
As far as the Lee, that was for my ex-husband's middle name.
Our next son was obviously going to be our Justin. He's now 13.
His middle name is also Lee. My Mom used to joke that we just weren't all that creative, but really it's because my Dad's middle name is Lee too.
Now on to my younger set...
Ryan Thomas was my third boy, he's now 5 (almost 6) and Daddy came up with his first name. It was from one of his favorite radio DJ's children. His son's were named Ryan and Gage.
Thomas was my idea, I had always loved the name Thomas. Don't really know from where. Maybe all the Magnum PI episodes my older brothers made me watch as a kid.. "Thomas Magnum". That's the only Thomas I ever really knew of. Good looking, charismatic, what wasn't to like? Ryan Thomas just seemed to flow.
Now Vincentio, that's a whole other story. We could NOT think of a name for this kid. We couldn't agree on anything. Daddy is half Hawaiian and half Italian so we started looking through name books. His oldest daughter had been given a Hawaiian name, Kalei (pronounced kah-lay) so we thought that the youngest should have an ethnic name as well. We looked through half a dozen Hawaiian name books and just couldn't find anything we could agree on and the male Hawaiian names in his family are VERY hard to pronounce so we didn't want to go there.
We started looking at Italian names on the internet when I went into premature labor. Two days after he was born we were still looking (ha). With all the hubbub going on with his DS and heart diagnosis, my older boys took on the task of looking for a name.
On the third day after he was born, my boys called me at the hospital and announced that they had found the name Vincentio on an Italian name website.
It is a derivative of Vincent, the conqueror. It sounded exactly like the strong name our little munchkin needed. As for his middle name Albert, that is for Daddy's grandfather who raised him and my paternal grandfather who died when I was young. The only one of my grandparents I was ever really close to.
Tuesday, October 13, 2009
Flying High...
She has gone home ...
Early this morning, at 3:50am Jessica Easley took her final, painful breath on this earth.
She did get her final wish, to go to Heaven at 11 years old! Yes, she departed this life on the very day, 11 years ago, that she entered it.
She is free now. Running and playing with 2 legs, 2 healthy lungs.
The only consolation in this terrible thing is that along with her earthly body, so died the beast.
It has lost. It causes her no more fear, no more pain. It can't take any more.
Oh how I wish there were something besides death that could have conquered this.
--------------------------------------------------------------------
Thank you all so much for your kind words and for putting up with my ranting of late.
It's difficult in these situations not to climb up high and scream it from the rooftops!
The saddest part is that it is not over. So many more of our friends will meet the same fate I'm afraid. And when they do, there will be no doubt in anyone's mind of how it makes me feel.
Thank you all again.
Just to pass along the information, Jessica will have visitation on October 15,2009.. burial will take place on the 16th.
Her procession will consist of one final motorcycle ride through town before she is laid to rest that afternoon. I can only imagine the huge smile she'll have from up above. She did specifically request that all in attendance wear bright, cheerful colors. No black unless you're wearing biker leather!
For the rest of her "celebration of life" plans please see her caringbridge site.
www.caringbridge.org/visit/jessicaeasley
You all are the best.
P.S. I'll post later tonight with some more from the little skitterbug! He's had a busy day.
Early this morning, at 3:50am Jessica Easley took her final, painful breath on this earth.
She did get her final wish, to go to Heaven at 11 years old! Yes, she departed this life on the very day, 11 years ago, that she entered it.
She is free now. Running and playing with 2 legs, 2 healthy lungs.
The only consolation in this terrible thing is that along with her earthly body, so died the beast.
It has lost. It causes her no more fear, no more pain. It can't take any more.
Oh how I wish there were something besides death that could have conquered this.
--------------------------------------------------------------------
Thank you all so much for your kind words and for putting up with my ranting of late.
It's difficult in these situations not to climb up high and scream it from the rooftops!
The saddest part is that it is not over. So many more of our friends will meet the same fate I'm afraid. And when they do, there will be no doubt in anyone's mind of how it makes me feel.
Thank you all again.
Just to pass along the information, Jessica will have visitation on October 15,2009.. burial will take place on the 16th.
Her procession will consist of one final motorcycle ride through town before she is laid to rest that afternoon. I can only imagine the huge smile she'll have from up above. She did specifically request that all in attendance wear bright, cheerful colors. No black unless you're wearing biker leather!
For the rest of her "celebration of life" plans please see her caringbridge site.
www.caringbridge.org/visit/jessicaeasley
You all are the best.
P.S. I'll post later tonight with some more from the little skitterbug! He's had a busy day.
Monday, October 12, 2009
Just to clarify..
I'm a little calmer now than I was earlier. Just to let you all know, Jessica is still hanging on.
I don't want anyone to think that I have any contempt for "pink" ribbons. Breast cancer is a killer. It deserves awareness and funding. It deserves every bit of the attention it gets.
The Susan G Komen foundation has made incredible strides in their fight for women's health.
It's just incredibly maddening that our children, OUR CHILDREN.. cannot get the same.
People don't understand how insidious cancer in children can be. How such a monster of destruction can grow inside of such an innocent being. It spares no one.
Most childhood cancers are very unlike cancer in adults. It cannot be treated with the same drugs used in adults in most cases, and when a child with cancer relapses the survival rate can drop from 90% (for common forms of ALL) to a mere 10%. When it comes back, it comes back with a vengeance. A child in remision is not considered "cured" for years, so the possibility of relapse is astronomical.
There are some forms of childhood cancer that start out with survival rates of only 5%, those tend to be the "rare" cancers, like ATRT (brain tumor). So rare, and we've already lost more friends to that particular "rarity" this year than I can count on both hands. It's unbelievable.
Then there are cancers like Jessica's ARMS (soft tissue cancer). She has fought this beast for over 3 years, been in remission twice, and with every relapse the cancer seems to "outsmart" the drugs. This is unfortunately very common in many forms of childhood cancer. The beast learns to adapt and change so it lives despite the toxic chemicals that are designed to kill it. Even one cell remaining after treatment can grow an army of new, "smarter" killers.
This is why we need more funding, new drugs. In Jessica's case, she has tried all the chemo drugs. None of them work anymore, and there is nothing left to fight with. No new drug that she hasn't tried yet to kill this beast. There's nothing.
What are you supposed to do when the doctor says there's nothing left they can try???
You take your child home.
You do your best to help control their pain and fear as the beast takes over their body, robbing them of the most basic of functions.
You spend time trying to explain Heaven to your child and hope they are not afraid.
You try to make enough memories to last the rest of YOUR life without them, like that's even possible.
You help your baby to die with some sense of dignity and peace, as the beast tries it's hardest to rob them of it.
What the hell??? Ok, maybe not much calmer.
I want to see as many gold ribbons as pink. Our children deserve it.
Spread the word.
I don't want anyone to think that I have any contempt for "pink" ribbons. Breast cancer is a killer. It deserves awareness and funding. It deserves every bit of the attention it gets.
The Susan G Komen foundation has made incredible strides in their fight for women's health.
It's just incredibly maddening that our children, OUR CHILDREN.. cannot get the same.
People don't understand how insidious cancer in children can be. How such a monster of destruction can grow inside of such an innocent being. It spares no one.
Most childhood cancers are very unlike cancer in adults. It cannot be treated with the same drugs used in adults in most cases, and when a child with cancer relapses the survival rate can drop from 90% (for common forms of ALL) to a mere 10%. When it comes back, it comes back with a vengeance. A child in remision is not considered "cured" for years, so the possibility of relapse is astronomical.
There are some forms of childhood cancer that start out with survival rates of only 5%, those tend to be the "rare" cancers, like ATRT (brain tumor). So rare, and we've already lost more friends to that particular "rarity" this year than I can count on both hands. It's unbelievable.
Then there are cancers like Jessica's ARMS (soft tissue cancer). She has fought this beast for over 3 years, been in remission twice, and with every relapse the cancer seems to "outsmart" the drugs. This is unfortunately very common in many forms of childhood cancer. The beast learns to adapt and change so it lives despite the toxic chemicals that are designed to kill it. Even one cell remaining after treatment can grow an army of new, "smarter" killers.
This is why we need more funding, new drugs. In Jessica's case, she has tried all the chemo drugs. None of them work anymore, and there is nothing left to fight with. No new drug that she hasn't tried yet to kill this beast. There's nothing.
What are you supposed to do when the doctor says there's nothing left they can try???
You take your child home.
You do your best to help control their pain and fear as the beast takes over their body, robbing them of the most basic of functions.
You spend time trying to explain Heaven to your child and hope they are not afraid.
You try to make enough memories to last the rest of YOUR life without them, like that's even possible.
You help your baby to die with some sense of dignity and peace, as the beast tries it's hardest to rob them of it.
What the hell??? Ok, maybe not much calmer.
I want to see as many gold ribbons as pink. Our children deserve it.
Spread the word.
Consider this your "fair warning"...
Damn it!!! It's not fair.
She's 10 yars old, and she can't move. Since Saturday she can no longer move AT ALL. She can barely breathe, she can't open her eyes or speak. She can't even squeeze her Mom's hand anymore.
She can cry. When she is touched or moved for any reason, she can cry from the pain.
When her family tells her that it's OK to let go, to be with Jesus, she can cry.
Where is God's plan in all of this? Don't get me wrong, I am still a believer, but it's just so hard to understand how this is possible.
Where is God's mercy?
There are pink ribbons everywhere for breast cancer, as there should be, it's a horrible disease.
Where are the gold ribbons for our children ???
.. 46 children are diagnosed with cancer EVERY DAY.
.. it is the #1 killer of children, more than cystic fibrosis, AIDS, and genetic anomalies combined.
..EVERY NIGHT, 7 children fighting this beast will not live to see the next day.
..it has been 20 YEARS!!! since a new drug was approved to fight childhood cancer.
Why don't more people seem to care ???
Where is their hope for a cure ???
www.caringbridge.org/visit/jessicaeasley
She's 10 yars old, and she can't move. Since Saturday she can no longer move AT ALL. She can barely breathe, she can't open her eyes or speak. She can't even squeeze her Mom's hand anymore.
She can cry. When she is touched or moved for any reason, she can cry from the pain.
When her family tells her that it's OK to let go, to be with Jesus, she can cry.
Where is God's plan in all of this? Don't get me wrong, I am still a believer, but it's just so hard to understand how this is possible.
Where is God's mercy?
There are pink ribbons everywhere for breast cancer, as there should be, it's a horrible disease.
Where are the gold ribbons for our children ???
.. 46 children are diagnosed with cancer EVERY DAY.
.. it is the #1 killer of children, more than cystic fibrosis, AIDS, and genetic anomalies combined.
..EVERY NIGHT, 7 children fighting this beast will not live to see the next day.
..it has been 20 YEARS!!! since a new drug was approved to fight childhood cancer.
Why don't more people seem to care ???
Where is their hope for a cure ???
www.caringbridge.org/visit/jessicaeasley
Sunday, October 11, 2009
The Time Is Near...
Sweet Jessica is still here, for now.
Her Mom, Teresa, feels strongly that besides the love she has for her family, that the one thing keeping Jessica here is the fact that she desperately wants to see her 11th birthday.
That day is still three days away.. it might as well be a million....
Teresa cannot stand to see Jessica suffer any longer. In her weakened state, Jessica is a bit confused when she is awake. With the huge amount of pain meds she is on, it's amazing that she can be awake at all.
Yesterday Teresa decided that Jessica's birthday can't wait any longer. Her baby deserves to be free.
So they decided that yesterday, Saturday 10/10/2009 would be Jessica's "birthday".
They knew that she would never be able to eat a birthday cake. She can no longer swallow due to the tumors in her neck. But how could she not have one?
So they asked her what kind she wanted, carrot or chocolate. With a huge smile, Jessica ordered the chocolate birthday cake.
"Chocolate".. is the last word she spoke.
Since then she has been relatively comatose. She does sigh and make sound now and then, but her pain seems controlled so she sleeps peacefully for now.
The whole family is beyond in shock that this may be the end. Jessica has fought so hard for so many years, no one can believe it's really about to be over. The fight for her life has really ended. Now the fight is for her to gain a beautiful set of wings. To fly free.
I will post more when I know. For now please pray for this child to have a peaceful journey.
Her Mom, Teresa, feels strongly that besides the love she has for her family, that the one thing keeping Jessica here is the fact that she desperately wants to see her 11th birthday.
That day is still three days away.. it might as well be a million....
Teresa cannot stand to see Jessica suffer any longer. In her weakened state, Jessica is a bit confused when she is awake. With the huge amount of pain meds she is on, it's amazing that she can be awake at all.
Yesterday Teresa decided that Jessica's birthday can't wait any longer. Her baby deserves to be free.
So they decided that yesterday, Saturday 10/10/2009 would be Jessica's "birthday".
They knew that she would never be able to eat a birthday cake. She can no longer swallow due to the tumors in her neck. But how could she not have one?
So they asked her what kind she wanted, carrot or chocolate. With a huge smile, Jessica ordered the chocolate birthday cake.
"Chocolate".. is the last word she spoke.
Since then she has been relatively comatose. She does sigh and make sound now and then, but her pain seems controlled so she sleeps peacefully for now.
The whole family is beyond in shock that this may be the end. Jessica has fought so hard for so many years, no one can believe it's really about to be over. The fight for her life has really ended. Now the fight is for her to gain a beautiful set of wings. To fly free.
I will post more when I know. For now please pray for this child to have a peaceful journey.
Saturday, October 10, 2009
Taking Flight
I do hate these posts.. never quite sure how to begin, just have to go for it I guess.
This one if for sweet Jessica Easley. I have posted about Jessica several times over the past month. Last time, a couple of weeks ago, they didn't think she would be with us much longer.
But true to fashion, Jessica still fights. Fighting to live, fighting for her angel wings.
Mom says her favorite saying is "i'm a rule maker, and a rule breaker". She's one tough 10 year old.
These past few days have been very hard. Jessica has been totally bedridden and unable to move her body for weeks now, but in the past few days the beast has grown drastically. The tumors in her chest and neck have begun to expand rapidly and spread upward into her face.
She has developed immense swelling in her face and throat. Although she is now on oxygen continuously, breathing is a fulltime struggle. Her fear of suffocation continues to be a constant.
She has been sleeping much of the time, when she is awake and lucid she is still giving Mom instructions about how she wants her celebration of life to be carried out. She is hoping to make it another few days to her 11th birthday. She says her one true wish, other than to die in her sleep, is to go to Heaven at 11 years old, not 10.
Wtf..
How on earth can there not be anything left to fight with for these precious babies?
How can we possibly be forced to stand by and do nothing but watch as the beast overtakes this child and devours her?
Where's the sense in the fact that it's been 20 YEARS since a new drug was approved to fight childhood cancer?
When we all tuck our children into bed tonight and give thanks to the Almighty for their health and safety, please remember that Jessica is fighting still..
..and that there are seven other children fighting the beast somewhere tonight that won't live to see the sunrise. And as those children end their fight on this earth, tomorrow, 46 more children will just be beginning the fight.
Spread the word.
www.caringbridge.org/visit/jessicaeasley
This one if for sweet Jessica Easley. I have posted about Jessica several times over the past month. Last time, a couple of weeks ago, they didn't think she would be with us much longer.
But true to fashion, Jessica still fights. Fighting to live, fighting for her angel wings.
Mom says her favorite saying is "i'm a rule maker, and a rule breaker". She's one tough 10 year old.
These past few days have been very hard. Jessica has been totally bedridden and unable to move her body for weeks now, but in the past few days the beast has grown drastically. The tumors in her chest and neck have begun to expand rapidly and spread upward into her face.
She has developed immense swelling in her face and throat. Although she is now on oxygen continuously, breathing is a fulltime struggle. Her fear of suffocation continues to be a constant.
She has been sleeping much of the time, when she is awake and lucid she is still giving Mom instructions about how she wants her celebration of life to be carried out. She is hoping to make it another few days to her 11th birthday. She says her one true wish, other than to die in her sleep, is to go to Heaven at 11 years old, not 10.
Wtf..
How on earth can there not be anything left to fight with for these precious babies?
How can we possibly be forced to stand by and do nothing but watch as the beast overtakes this child and devours her?
Where's the sense in the fact that it's been 20 YEARS since a new drug was approved to fight childhood cancer?
When we all tuck our children into bed tonight and give thanks to the Almighty for their health and safety, please remember that Jessica is fighting still..
..and that there are seven other children fighting the beast somewhere tonight that won't live to see the sunrise. And as those children end their fight on this earth, tomorrow, 46 more children will just be beginning the fight.
Spread the word.
www.caringbridge.org/visit/jessicaeasley
Thursday, October 8, 2009
So I have an issue.. imagine that.
Alrighty.
So my naughty little skitterbug is now 4 years old. Holy crap.
Last year after his 3rd birthday he officially "transitioned" from the Early Steps birth to three program to "schoolage"... scary.
We did alot of research into looking for the best fit for him in a pre k program. The local mainstream elementary school was our first option. Considering V's collection of special medical issues, along with the need for tube feeding, he needed to be placed into a "special needs" classroom. No shocker there.
The teacher was a lovely older woman who was immediately taken with my boy. She did comment on the fact that the special needs class was for kids from 3 to 5 years old, and they had never handled a child of his tiny size or with his extensive medical issues. At that point he still was not even walking yet. She admitted that he would require quite a bit of extra attention not only for teaching but to keep him safe in a classroom of typically sized children. He was not mobile to where he could participate in most class activities or even on the playground. He still didn't even have meaningful speech. She did say that she would be willing herself to make whatever accomodations were neccesary for him, but she would not be teaching the class after the start of the next year. She was retiring. The new teacher was younger than she, and new to the special education teaching position.
One option OUT.
The next and final option was our local "Easter Seals" school. I was excited about the possibilities there because my older brother, who was born with cerebral palsy had attended the ES pre school program when he was a child. He made amazing strides there.
When we first toured the facility we were very impressed with the staff. They were friendly and accomodating. They thought V would do very well in their program.
The only problem was that their 3 year old class was comprized of a group of walking, talking toddlers who dwarfed my tiny munchkin in size and ability. The head of placement thought he would fare better in the 2 year old class. It was understandable, but the 2 year old class was not a pre k class. It was more of a daycare with a therapeutic edge. Not bad, but not what we were hoping for.
You see, cognitively, V was far ahead of his physical ability. We didn't want his mind stunted by being placed in a room where he would do nothing but sit and play on a rug for 3 1/2 hours a day. He could do that at home for free.
Still, everyone felt he needed to make the move from home based intervention to a school setting so we went for it and hoped for the best. It took weeks of testing and paperwork, doctors orders and medical approvals, but we did it. And so began his first year of pre k.
The first week was rough. His room was cold, a problem with the air system, so we were asked to dress him warmly. Still, every time I picked him up he was a teeny tiny popsicle.
The second week he began to get low grade fevers and was sent home on two occasions.
By the third week they were asking us to keep him home if he even sniffled because of his medical history, and by the fourth week the school nurse called me at home and stated that perhaps he was not ready physically (immunity wise) to be in a group setting.
So ended our pre k experience. The head of the school gave me the necessary paperwork to apply for home schooling based on medical need, but before I could submit them to the school board for approval, the whole G tube nightmare began.
In and out of the hospital, infections and fevers galore. Definitely not acceptable for school visits, even at home.
Since then he's had to miss an extensive amount of therapy as well since he just wasn't able to participate in a care setting, and home visits, given our housing situation, are not optimal.. or popular with the local therapy providers.
Finally, over the past month he has begun to blossom once again, and I am attempting to find available therapy to get him restarted. He should be receiving 60 minutes per week of PT/OT and speech. Hopefully that will be up and running soon.
Now I am left with the pre k issue.
I'm not super excited about returning to the Easter Seals school again. I really don't know that his immune system is any more ready than it was last year, and with the flu craze.. don't really wanna go there. But this year and next he will still need pre k services before he can start kindergarten.
He is definitely mobile now, he started walking earlier this year. Not yet very steady, but he's getting there slowly. He still does not have meaningful speech for communication. He does sign some, but most of his interaction is because WE understand what his sounds and signs mean.
So my naughty little skitterbug is now 4 years old. Holy crap.
Last year after his 3rd birthday he officially "transitioned" from the Early Steps birth to three program to "schoolage"... scary.
We did alot of research into looking for the best fit for him in a pre k program. The local mainstream elementary school was our first option. Considering V's collection of special medical issues, along with the need for tube feeding, he needed to be placed into a "special needs" classroom. No shocker there.
The teacher was a lovely older woman who was immediately taken with my boy. She did comment on the fact that the special needs class was for kids from 3 to 5 years old, and they had never handled a child of his tiny size or with his extensive medical issues. At that point he still was not even walking yet. She admitted that he would require quite a bit of extra attention not only for teaching but to keep him safe in a classroom of typically sized children. He was not mobile to where he could participate in most class activities or even on the playground. He still didn't even have meaningful speech. She did say that she would be willing herself to make whatever accomodations were neccesary for him, but she would not be teaching the class after the start of the next year. She was retiring. The new teacher was younger than she, and new to the special education teaching position.
One option OUT.
The next and final option was our local "Easter Seals" school. I was excited about the possibilities there because my older brother, who was born with cerebral palsy had attended the ES pre school program when he was a child. He made amazing strides there.
When we first toured the facility we were very impressed with the staff. They were friendly and accomodating. They thought V would do very well in their program.
The only problem was that their 3 year old class was comprized of a group of walking, talking toddlers who dwarfed my tiny munchkin in size and ability. The head of placement thought he would fare better in the 2 year old class. It was understandable, but the 2 year old class was not a pre k class. It was more of a daycare with a therapeutic edge. Not bad, but not what we were hoping for.
You see, cognitively, V was far ahead of his physical ability. We didn't want his mind stunted by being placed in a room where he would do nothing but sit and play on a rug for 3 1/2 hours a day. He could do that at home for free.
Still, everyone felt he needed to make the move from home based intervention to a school setting so we went for it and hoped for the best. It took weeks of testing and paperwork, doctors orders and medical approvals, but we did it. And so began his first year of pre k.
The first week was rough. His room was cold, a problem with the air system, so we were asked to dress him warmly. Still, every time I picked him up he was a teeny tiny popsicle.
The second week he began to get low grade fevers and was sent home on two occasions.
By the third week they were asking us to keep him home if he even sniffled because of his medical history, and by the fourth week the school nurse called me at home and stated that perhaps he was not ready physically (immunity wise) to be in a group setting.
So ended our pre k experience. The head of the school gave me the necessary paperwork to apply for home schooling based on medical need, but before I could submit them to the school board for approval, the whole G tube nightmare began.
In and out of the hospital, infections and fevers galore. Definitely not acceptable for school visits, even at home.
Since then he's had to miss an extensive amount of therapy as well since he just wasn't able to participate in a care setting, and home visits, given our housing situation, are not optimal.. or popular with the local therapy providers.
Finally, over the past month he has begun to blossom once again, and I am attempting to find available therapy to get him restarted. He should be receiving 60 minutes per week of PT/OT and speech. Hopefully that will be up and running soon.
Now I am left with the pre k issue.
I'm not super excited about returning to the Easter Seals school again. I really don't know that his immune system is any more ready than it was last year, and with the flu craze.. don't really wanna go there. But this year and next he will still need pre k services before he can start kindergarten.
He is definitely mobile now, he started walking earlier this year. Not yet very steady, but he's getting there slowly. He still does not have meaningful speech for communication. He does sign some, but most of his interaction is because WE understand what his sounds and signs mean.
He is also still VERY small. He wears 12 month pants and 24 month shirts. Little butt, big belly :) Not even close to his school age counterparts.
All this combined with his other medical history makes a Mommy worry.
Does anyone have any helpful advise? To homeschool or not to homeschool?
What would/did you choose for your child???
HELP!
What would/did you choose for your child???
HELP!
Tuesday, October 6, 2009
Yes, I'm a slacker.
As you all know by now, this is Down Syndrome Awareness Month.
Many of our blogging friends are participating in the 31 for 21 this month to expose the beauty and wonder of our loved one's with Ds.
I would be participating myself if I weren't so busy chasing after my loved one with Ds.
Yep, the V man has been running us all ragged since he's healed up so nicely from his last surgery. He's into everything. Destruction on wheels.
I couldn't be happier honestly. As tired as it makes me, I still remember those days when Ms. Sue (our PT) couldn't even get him to bear weight on his legs without a shrieking chorus of displeasure.
Now, I have to resort to the "baby jail" on occasion just to brush my teeth without a major disaster.. ha!
Even his every six hour med doses are only short pit stops and a quick raise of his shirt to "shoot the button" as Daddy calls it. It's sooo nice with this new site, it works right and since there's no pain involved, he readily allows me access without any meltdowns.
Well, that's the breakdown, the runchkin is kickin my butt.
Just spending my days trying to keep up.. and enjoying the healthy while we have it.
Many of our blogging friends are participating in the 31 for 21 this month to expose the beauty and wonder of our loved one's with Ds.
I would be participating myself if I weren't so busy chasing after my loved one with Ds.
Yep, the V man has been running us all ragged since he's healed up so nicely from his last surgery. He's into everything. Destruction on wheels.
I couldn't be happier honestly. As tired as it makes me, I still remember those days when Ms. Sue (our PT) couldn't even get him to bear weight on his legs without a shrieking chorus of displeasure.
Now, I have to resort to the "baby jail" on occasion just to brush my teeth without a major disaster.. ha!
Even his every six hour med doses are only short pit stops and a quick raise of his shirt to "shoot the button" as Daddy calls it. It's sooo nice with this new site, it works right and since there's no pain involved, he readily allows me access without any meltdowns.
Well, that's the breakdown, the runchkin is kickin my butt.
Just spending my days trying to keep up.. and enjoying the healthy while we have it.
Saturday, October 3, 2009
A quick PLEASE for all our friends.
Please, please, please.. if you have knees, now's the time to use them.
Our friend Jessica Easley, the 10 year old girl I wrote about before is nearing the end of her journey.
Jessica has been fighting alveolar rhabdomyosarcoma for the past 3 years. When she was 7, she lost her leg to the beast. After a brief remission she relapsed in her lungs. She fought unbelievably hard and achieved a second remission soon after.
Then only last month she confided in her Mom that she believed her cancer had returned.
Her heart hurt her, all the time. Mom tried hard to think she was wrong. Nothing else to go on.
Until.. a few weeks ago Jessica came down with a "cold" that caused fluid in her lungs.
A trip to the ER revealed that the beast has returned, with a vengeance. This time it was in her spine and her thoracic cavity wrapped around her aeorta.. near her heart.
Within days she was deemed "terminal" and was allowed to go home on hospice. Even for her young age, she's fought the beast so hard that she's exhausted her lifetime allowance of chemo and radiation. How does something like that happen to a 10 year old? For the last couple of weeks Jessica has been confined to a hospital bed in her living room and unable to move due to the intense pain the tumors are causing as they destroy her from within. Her spirits have remained high throughout this horrible time. A testament to the fight within her.
Her Mom says she has been diligently working on her "celebration of life" that is to come. She's been trying to strengthen her family so that they will be able to go on without her as she tries to prepare herself for Heaven. How does a kid do that?
Today, Jessica has taken a turn, her breathing is difficult. The beast has distorted her chest and is crowding her heart and lungs. One particularly nasty tumor invading her neck is impeding on her airway. She is terrified that she will suffocate.
They don't believe she has much time left with us and they are praying that Jessica gets her most important wish. To die peacefully in her sleep, without pain. A wish that up until now she's been denied.
She's only 10 years old. It's not fair.
www.caringbridge.org/visit/jessicaeasley
Our friend Jessica Easley, the 10 year old girl I wrote about before is nearing the end of her journey.
Jessica has been fighting alveolar rhabdomyosarcoma for the past 3 years. When she was 7, she lost her leg to the beast. After a brief remission she relapsed in her lungs. She fought unbelievably hard and achieved a second remission soon after.
Then only last month she confided in her Mom that she believed her cancer had returned.
Her heart hurt her, all the time. Mom tried hard to think she was wrong. Nothing else to go on.
Until.. a few weeks ago Jessica came down with a "cold" that caused fluid in her lungs.
A trip to the ER revealed that the beast has returned, with a vengeance. This time it was in her spine and her thoracic cavity wrapped around her aeorta.. near her heart.
Within days she was deemed "terminal" and was allowed to go home on hospice. Even for her young age, she's fought the beast so hard that she's exhausted her lifetime allowance of chemo and radiation. How does something like that happen to a 10 year old? For the last couple of weeks Jessica has been confined to a hospital bed in her living room and unable to move due to the intense pain the tumors are causing as they destroy her from within. Her spirits have remained high throughout this horrible time. A testament to the fight within her.
Her Mom says she has been diligently working on her "celebration of life" that is to come. She's been trying to strengthen her family so that they will be able to go on without her as she tries to prepare herself for Heaven. How does a kid do that?
Today, Jessica has taken a turn, her breathing is difficult. The beast has distorted her chest and is crowding her heart and lungs. One particularly nasty tumor invading her neck is impeding on her airway. She is terrified that she will suffocate.
They don't believe she has much time left with us and they are praying that Jessica gets her most important wish. To die peacefully in her sleep, without pain. A wish that up until now she's been denied.
She's only 10 years old. It's not fair.
www.caringbridge.org/visit/jessicaeasley
Absenteeism..
Sorry for the lack of updates lately. It's not that there's any less happening around here, it's just been super exhausting.
Mainly V has been stable lately. He recovered well from the flu, thank goodness. I still have yet to get any photographic lovelies of his new improved belly but I haven't forgotten.
This past week Ryan has been our main area of worry. Ryan is five, almost six (Nov.2)..
(shameless birthday plug).
He got the flu also this past week but usually he's an extremely healthy kid.
For a few weeks before the flu though, we noticed a worsening nighttime cough.
Not a dry, asthma like cough, but a sort of junky sounding cough.
During the days he was pretty much his normal self so I figured it would pass.
Then the flu came.. and went, and the cough is still there. A little worse actually.
Now it's increasing a bit in the daytime and he's been much more sleepy.
.. and grumpy.
Now, keep in mind that Ryan is the type you have to promise gifts to, or threaten bodily harm to get him into bed at night. And the last few weeks he's ready for bed by 7pm.
Now the last week he's been falling asleep on the way home from school and sleeping right through dinner.
Decidedly NOT normal.
We're going to see how he is this weekend and we may be making another visit to our friendly neighborhood pediatrician.
Mucinex, Claritin and breathing treatments are helping the cough some, but not enough (Ryan has never needed breathing treatments). And this sleepy thing has thrown me for a loop.
I've already done the nervous Mommy check over. No skin rashes or lumps and bumps that I can find, and when he is up and awake he seems alright for the most part. Except for the overly grumpiness and cough. No fevers since the flu made it's leave.
So, send healthy vibes if ya got em', and hopefully we'll be back to our crazy selves soon.
Monday, September 28, 2009
Bad News and Good News
First the bad.
F L U.
All four kiddos. High fevers, nausea, dry heaves, diarrhea.
Oh the good times we've had.
Pediatrician says she thinks it was swine flu, but whatever it was, I'm glad it's almost gone.
On to the good...
We saw pulmonology and the surgeon today.
Pulmonology, Dr. B said that for all of V's yuckiness of the past week his lungs sound alright.
We are to continue with his daily Pulmicort nebs to fend off any reactive airway issues, and he refilled all of our regular meds. He even hooked us up with a new nebulizer and aerochamber.. woohoo.
The surgeon, Dr.P says the granulation tissue is just being stubborn... really???
He gave us a new script for some amped up steroid cream and a new regimen to knock out the gooey, oozey, puffiness.
He even said the since V's tube has already been out once, well, twice now, that we can go ahead and switch it to a button and get rid of this long tube! Yay!
He thinks the long gtube wiggling around is contributing to the build up of the granulation tissue. His PA faxed the order to home health at 4pm today and by 7pm we had the button guy knocking at our door!!!
Tonight when he's settled we'll do the switchroo and I'll try to get some pics of his new minimalist belly hardware.
F L U.
All four kiddos. High fevers, nausea, dry heaves, diarrhea.
Oh the good times we've had.
Pediatrician says she thinks it was swine flu, but whatever it was, I'm glad it's almost gone.
On to the good...
We saw pulmonology and the surgeon today.
Pulmonology, Dr. B said that for all of V's yuckiness of the past week his lungs sound alright.
We are to continue with his daily Pulmicort nebs to fend off any reactive airway issues, and he refilled all of our regular meds. He even hooked us up with a new nebulizer and aerochamber.. woohoo.
The surgeon, Dr.P says the granulation tissue is just being stubborn... really???
He gave us a new script for some amped up steroid cream and a new regimen to knock out the gooey, oozey, puffiness.
He even said the since V's tube has already been out once, well, twice now, that we can go ahead and switch it to a button and get rid of this long tube! Yay!
He thinks the long gtube wiggling around is contributing to the build up of the granulation tissue. His PA faxed the order to home health at 4pm today and by 7pm we had the button guy knocking at our door!!!
Tonight when he's settled we'll do the switchroo and I'll try to get some pics of his new minimalist belly hardware.
Thursday, September 24, 2009
Toobie Gooey's
Ok all you tube Mom's. As you all know V has his new tube site, finally, and all has been well.
Except for the elongated stay in the hospital, and the TWO.. yes, two times that it's been PULLED OUT ALREADY!!
Thank goodness this stoma seems pretty resilient, but we do seem to have one very prominent issue. One that we just can't seem to get under control.
... granulation tissue. ick.
It's been a couple of years since our last G tube adventure and he did have quite a bit of granulation tissue with that go-around but eventually we got it under control.
Now if I could just remember how we did it.
His tissue is pretty bad right now, something like an enormous flesh donut. Mmm.. good stuff.
For a week now we've been religious with the steroid cream. I don't want to over do it though because too much steroid cream can actually thin the skin.
Our other course of action has been silver nitrate. We've done that three times now and still nothing.
I'm beginning to think this stuff feeds off my frustration. It's just getting bigger.
Has anyone out there found the magic cure by any chance???
Except for the elongated stay in the hospital, and the TWO.. yes, two times that it's been PULLED OUT ALREADY!!
Thank goodness this stoma seems pretty resilient, but we do seem to have one very prominent issue. One that we just can't seem to get under control.
... granulation tissue. ick.
It's been a couple of years since our last G tube adventure and he did have quite a bit of granulation tissue with that go-around but eventually we got it under control.
Now if I could just remember how we did it.
His tissue is pretty bad right now, something like an enormous flesh donut. Mmm.. good stuff.
For a week now we've been religious with the steroid cream. I don't want to over do it though because too much steroid cream can actually thin the skin.
Our other course of action has been silver nitrate. We've done that three times now and still nothing.
I'm beginning to think this stuff feeds off my frustration. It's just getting bigger.
Has anyone out there found the magic cure by any chance???
Wednesday, September 23, 2009
Is it the FLU?
Sicky McSickerson....
Happier times...
And so it begins. Last week my oldest stepdaughter Kalei had a fever. Not so surprising now that school is back in session, she tends to catch everything. She missed the entire first week of school earlier in the month.
Her younger sister Alissa developed the fever at school this morning and the clinic sent her home. She is always the healthy one. Her immune system is above average.
Headaches, upset tummies, chills, fever.
Oh crap.
Well, we decided to take advantage of our one option to save little man from the dreaded bug.
We sent them to their Mom's house. It was such a sweet phone call too.. "they're sick, come and get 'em."
I felt terrible, but we know rightfully, that we have to do everything we can to keep V from any exposure. Still, I feel like the bad Mommy.
So we're down by 2 until we know they're not infectious.. it could be a while.
Are you kidding me???
Seriously. No.
First of all, if that darned toobie comes out again i'm gonna find me some super glue before I put it back in again.
Seriously.
Last night V, otherwise know now as Cheeto (thanks Courtney), was awake with Daddy somewhere around 1am when they decided to do some rearranging in the bedroom.
Don't ask, I have no clue.
Anyway, I was woken up from Daddy yelling a choice expletive.. or three.
Then those words. "It's out again!"
WTF!!!
Yes, it's out again. Balloon inflated, everything intact, laying on the bedsheets.
Nice, shiny new stoma.. with nothin' in it!
oh. my. God.
*sigh*
So it's back in. Again. Balloon is a teeny tiny bit bigger this time.
Grrr.
What is it with my kid and that naughty toobie? What I ask you???
First of all, if that darned toobie comes out again i'm gonna find me some super glue before I put it back in again.
Seriously.
Last night V, otherwise know now as Cheeto (thanks Courtney), was awake with Daddy somewhere around 1am when they decided to do some rearranging in the bedroom.
Don't ask, I have no clue.
Anyway, I was woken up from Daddy yelling a choice expletive.. or three.
Then those words. "It's out again!"
WTF!!!
Yes, it's out again. Balloon inflated, everything intact, laying on the bedsheets.
Nice, shiny new stoma.. with nothin' in it!
oh. my. God.
*sigh*
So it's back in. Again. Balloon is a teeny tiny bit bigger this time.
Grrr.
What is it with my kid and that naughty toobie? What I ask you???
Sunday, September 20, 2009
Finally.. some pictures
After my last post I did try to get some pictures of the birthday boy, really I did.
I managed to at least get some pics WITHOUT any friendly hand gestures..
It was the best I could do. He's crafty with that magazine.
And as an added bonus, some pictures of lil man's newest tummy hardware. They aren't great because I can't turn off the flash on my camera, but here it is. The old site is just above the gauze. You can't see it from this angle, but it looks awesome.
I managed to at least get some pics WITHOUT any friendly hand gestures..
It was the best I could do. He's crafty with that magazine.
And as an added bonus, some pictures of lil man's newest tummy hardware. They aren't great because I can't turn off the flash on my camera, but here it is. The old site is just above the gauze. You can't see it from this angle, but it looks awesome.
The old tube, the one that was, um, prematurely dislodged.. was nearly the same. It was yellow with no little silicone disk because it was sutured in. Oh well.
I don't even want to imagine the fun conversation i'm going to have with his surgeon tomorrow.
*sigh*
Poor Daddy
So in the hub bub of the past few days, Daddy's birthday post was put on the back burner.
He turned the big 3 - 2 on Friday the 18th!!!
Happy Birthday Daddy!!!!!!
We had a great day, all the kids together, and a big FAT homemade cheesecake covered in delectable cherries for the birthday boy.. um, man.
Of course I have no pictures.
Not just because my camera stinks and every picture I take comes out looking like some really bad mugshot, but because, frankly, Daddy doesn't enjoy having his picture taken.
In fact, if I were to get a surprise shot of him, it usually includes some obscene hand gesture compelling me NOT to upload it for the viewing pleasure of the general public.
Love you babe.
He turned the big 3 - 2 on Friday the 18th!!!
Happy Birthday Daddy!!!!!!
We had a great day, all the kids together, and a big FAT homemade cheesecake covered in delectable cherries for the birthday boy.. um, man.
Of course I have no pictures.
Not just because my camera stinks and every picture I take comes out looking like some really bad mugshot, but because, frankly, Daddy doesn't enjoy having his picture taken.
In fact, if I were to get a surprise shot of him, it usually includes some obscene hand gesture compelling me NOT to upload it for the viewing pleasure of the general public.
Love you babe.
Saturday, September 19, 2009
Oh Holy Crap!
Guess who got his brand spanking new toobie RIPPED out of his tummy, sutures and all?
I'll give you one guess.
Yup, that would be my munchkin.
So we cleaned up the blood gushing EVERYWHERE, found a spare Mic G tube from our last ever -so- fun gastrostomy adventure, and popped that sucker in the quickly shrinking stoma.
*sigh*
Have you ever heard the saying "if it wasn't for bad luck, we'd have no luck at all"...
... that's us.
After a record setting trip in and out of APH's ER (they had a mad influx of possible swine flu cases in the ER today).. the surgeon looked him over and was able to aspirate stomach contents. He reassured me that we'd done exactly what they would have done for him and politely hurried us out the door.
In his words, "you don't want to leave here with anything you didn't come in with".
i.e. swine flu.
We're home now.
V is happy as ever.
And Mommy is relatively freaked out.
Friday, September 18, 2009
Prayers For Jaxson
I know I haven't had the happiest of posts the last few days, but the fact of the matter is, there are far too many of our friends suffering.
I'm sure by now you all know sweet Jaxson and his Mom Lacey.
Jax has been having worsening issues with his heart and veins causing some majorly troubling symptoms. His doc's seem to have been dragging their feet a bit when it comes to taking care of this amazing little guy. He's already suffered a traumatic brain injury because, well, he simply did not receive the care he deserved when he was sick the last time.
Jax needs this next surgey to go smoothly, so does his family. They are so worried that Jax won't make it until his surgery next Friday.
Please, please send some love and prayers their way. www.jaxsonsfight.blogspot.com.
Pray for Jax to stay stable until next week, for his doctors and surgeons hands to guided by grace, and for some much needed peace of mind for his Momma.
Thanks.
I'm sure by now you all know sweet Jaxson and his Mom Lacey.
Jax has been having worsening issues with his heart and veins causing some majorly troubling symptoms. His doc's seem to have been dragging their feet a bit when it comes to taking care of this amazing little guy. He's already suffered a traumatic brain injury because, well, he simply did not receive the care he deserved when he was sick the last time.
Jax needs this next surgey to go smoothly, so does his family. They are so worried that Jax won't make it until his surgery next Friday.
Please, please send some love and prayers their way. www.jaxsonsfight.blogspot.com.
Pray for Jax to stay stable until next week, for his doctors and surgeons hands to guided by grace, and for some much needed peace of mind for his Momma.
Thanks.
Thursday, September 17, 2009
Annette Elizabeth Maxey
If you remember, last month (8/22/09) I posted about a sweet little girl, barely a year old, dying from a brain tumor.
Annette's parents were preparing to take her home with the help of hospice.
It's barely been a month out of the hospital.
A month of making memories, taking pictures, snuggling without wires and tubes.
Barely one month out of her WHOLE LIFE... just to be a little girl.
Tonight at 9:47pm Nettie went home to be with Jesus. Home to her big sister Maddie, who also died of rhabdoid cancer four years ago.
Don't know what else to say. Except that her parents have suffered more than any Mommy and Daddy ever should.
Go give some love.
www.maxeyweb.com
Annette's parents were preparing to take her home with the help of hospice.
It's barely been a month out of the hospital.
A month of making memories, taking pictures, snuggling without wires and tubes.
Barely one month out of her WHOLE LIFE... just to be a little girl.
Tonight at 9:47pm Nettie went home to be with Jesus. Home to her big sister Maddie, who also died of rhabdoid cancer four years ago.
Don't know what else to say. Except that her parents have suffered more than any Mommy and Daddy ever should.
Go give some love.
www.maxeyweb.com
Wednesday, September 16, 2009
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