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ToolManTimTaylor... PLEASE say a prayer!
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Thank God for that, Brother!!! "Now where are the Photos?", Asked Sheila. We are very thankful for Ashlyn coming home. It was a good thing that she took to the bottle for feeding, it was key to her comming home. I have a care package, and I'd like to swing by and drop it off somretime next week. How's Amy doing? I bet she is glad to be home too!! Moose
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Bob Wagner
TDR MEMBER
Congratulations Tim GREAT NEWS!
Tim, I just came across this thread and read the whole thing from start to finish. I have to say that the situation brought a lump to my throat as i was reading it. Im glad to see that everything is now going in a possitive direction. My thoughts and prayers are with you and your family and im sure i will see you soon.
Rob
Rob
Hey Rob thanks! Kinda creepy tho that the thread came to life again as I logged on this evening to post an update and bang here it is!
#ad
It has been great! Doin the baby thing, learnin' findin' things that can be used as weapons against the cats :-laf you know baby stuff. There have been a few bumps along the way with the most recent hump is the Rota virus which we know came from the hospital during one of the visits
Rota+Colostomy= RUUUUNNNN and duck for cover!
Amy at this point is being bumped up from Pro mom to Top Fuel mom as during the day Ash is mild mannered and by evening she is ready to go out and fight crime.
We have an official sit down team meeting in june (Hence no IRP) to go over the next phase of surgery. A good point was brought up about all of this with timing, and that is of course AJ (Yes nicknames allready) will be trying to start doing the sitting up thing at the time of the next set of seurgeries and that can be detremental. It was discussed before and sedation may be a factor here. I hate to think about what lies again ahead but foresight beyond that is a way brighter light.
I will fire up more when I get some time but for the moment I gotta put on the cape and make my rounds.
Peace!
#adIt has been great! Doin the baby thing, learnin' findin' things that can be used as weapons against the cats :-laf you know baby stuff. There have been a few bumps along the way with the most recent hump is the Rota virus which we know came from the hospital during one of the visits
Rota+Colostomy= RUUUUNNNN and duck for cover! Amy at this point is being bumped up from Pro mom to Top Fuel mom as during the day Ash is mild mannered and by evening she is ready to go out and fight crime.
We have an official sit down team meeting in june (Hence no IRP) to go over the next phase of surgery. A good point was brought up about all of this with timing, and that is of course AJ (Yes nicknames allready) will be trying to start doing the sitting up thing at the time of the next set of seurgeries and that can be detremental. It was discussed before and sedation may be a factor here. I hate to think about what lies again ahead but foresight beyond that is a way brighter light.
I will fire up more when I get some time but for the moment I gotta put on the cape and make my rounds.
Peace!
Bob Wagner
TDR MEMBER
Hey TMTT, I think about you guys daily.
Thanks for the update and great picture.
Bob
Thanks for the update and great picture.
Bob
It has been almost a month since anything has been posted here so I thought id see how things are going
Rob
Rob
Good ... up until last week. I will post in full about what's next but I have alot to do at the moment. Nothing major super crittical . . but urgent none the less. I will chime in tonite.
O. K two weeks back we went for a Pre~Op exam so they can look to see how far she has progressed, and also to see how she will hold up to the next series of operations. All was well then a week later we needed to go for a kidney scan to make sure that all is well there to sustain life during the next set of O. R proceedures.
Well the scan came back slightly negative ( I say this because flat out Negative to us anyhow equals un correctable) SLIGHTLY means there is a problem ... but can be repaired. She has an undetected anomoly that commonly causes Vesicoureteral Reflux which by itself is somewhat a normal thing in many children ... many in fact do not even know it and will self correct by age 6 or 7. However in Ash's case she can suffer from pyelonephritis which is bacterial because the muscle wall is weak mainly due to what she is going in for the second surgery to be corrected.
So this changes things a bit . . meaning do they go and fix everything in one fell swoop or wait. The team is meeting their minds over this and we should know soon. What may happen is they may ramp up the O. R schedule and perform sooner rather than later but that is TBD. Other than that we ae teething, rolling , yelling, trying to sit up , and of course testing mommy every chance she gets.
#ad
Well the scan came back slightly negative ( I say this because flat out Negative to us anyhow equals un correctable) SLIGHTLY means there is a problem ... but can be repaired. She has an undetected anomoly that commonly causes Vesicoureteral Reflux which by itself is somewhat a normal thing in many children ... many in fact do not even know it and will self correct by age 6 or 7. However in Ash's case she can suffer from pyelonephritis which is bacterial because the muscle wall is weak mainly due to what she is going in for the second surgery to be corrected.
So this changes things a bit . . meaning do they go and fix everything in one fell swoop or wait. The team is meeting their minds over this and we should know soon. What may happen is they may ramp up the O. R schedule and perform sooner rather than later but that is TBD. Other than that we ae teething, rolling , yelling, trying to sit up , and of course testing mommy every chance she gets.
#ad
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Man - she really looks a lot like Amy. 
Beers,
Matt
Beers,
Matt
Man - she really looks a lot like Amy.
Beers,
Matt
sure beats the alternative:-laf
Tough crowd :{ :-laf
How are things going, Tim?
Beers,
Matt
Beers,
Matt
Funny you should ask yet again I was just going to post! We just got the final news as to what is happening. it is Oo. while being :{ at the same time.
She had a few tests run on her just last week and all is go for throttle up. What the time line looks like is a little quick for me to be anywhere new comfortable but yet action needs to be taken for life to continue as a fortunate child.
On August 6th she goes in for Pre-op and systems stabilized. Allready I am choking here so bear with me, On the 7th is the next LARGE proceedure. The reconstruction phase will be very evasive and will require several hours of surgery in the O. R on the 7th.
It's crazy to think that with the last big O. R event the scar is massive (Alltho is allmost gone being babies ae generating skin constantly) and this one is going to be large as well. Yet I seem to see those scars as something as a reciept on life's charges. As time elapses the balance disapears.
Anyhow back to the post here, This one will be 2-3 weeks in the hospital, then 4 weeks at home rest, which will be as tough on her being no sitting up , urge to cawl , rolling over or otherwise excersizing any abdominal muscles. How in God's name do you keep a baby still I have no blinkin idea but absolutly is mission crittical.
6-8 weeks weeks out after that the Colostomy setup gets reversed and that presents it's own new set of challenges from then on out for the rest of the year after.
I do have to run at the moment but will however update soon!
She had a few tests run on her just last week and all is go for throttle up. What the time line looks like is a little quick for me to be anywhere new comfortable but yet action needs to be taken for life to continue as a fortunate child.
On August 6th she goes in for Pre-op and systems stabilized. Allready I am choking here so bear with me, On the 7th is the next LARGE proceedure. The reconstruction phase will be very evasive and will require several hours of surgery in the O. R on the 7th.
It's crazy to think that with the last big O. R event the scar is massive (Alltho is allmost gone being babies ae generating skin constantly) and this one is going to be large as well. Yet I seem to see those scars as something as a reciept on life's charges. As time elapses the balance disapears.
Anyhow back to the post here, This one will be 2-3 weeks in the hospital, then 4 weeks at home rest, which will be as tough on her being no sitting up , urge to cawl , rolling over or otherwise excersizing any abdominal muscles. How in God's name do you keep a baby still I have no blinkin idea but absolutly is mission crittical.
6-8 weeks weeks out after that the Colostomy setup gets reversed and that presents it's own new set of challenges from then on out for the rest of the year after.
I do have to run at the moment but will however update soon!
Good Luck to all of you, she's one special (Lucky) girl to have the family she has!
That and a new job too!! Wow! Talk about getting stressed!! Are you keep the same insurance? If you are changing over to Uncle Igor's Get the CT Care! More $$$ out of the pay check, but that 80/20 plan will kill you :{ with the $0. 05 and dime stuff. No wonder they had me walking winter of '06 #@$%! Moosed
That and a new job too!! Wow! Talk about getting stressed!! Are you keep the same insurance? If you are changing over to Uncle Igor's Get the CT Care! More $$$ out of the pay check, but that 80/20 plan will kill you :{ with the $0. 05 and dime stuff. No wonder they had me walking winter of '06 #@$%! Moosed
O. K I have a few minutes so I can bring us up to speed.
She went in monday for pre op setup,and cleanout. It was a tough sceene to deal with yet again as there were several setups that are new to me that she was hooked up to. The first was something some may know about which is a product called "Colyte" Or pronounced Goh-light-ly ... . Nuh uh not even remotely close to the meaning. Allmost like giving birth to satan's minions all at once. I have had it and I cannot begin to imagine how poor Ashy felt. On a good note thank god the colostomy setup allows for piping for direct "Ejection" shall we say.
So needless to say the poor thing was flat out upset at this going on. She also at this point had her IV started with pre op antibiotics. So over the next 6 hours she was cranky a bit as bottle feeding was a thing of the past and the ill effects of the mega laxative are wreaking havoc on the poor child's innerds.
Tuesday came and an aortic cathedor has been inserted and she is whisked into the O. R to begin the Colonic disection and reconstruction for the next 7 hours ... yes seven (45 minutes for recovery) hours. All went well and the surgon is absolutly pleased as this is his TENTH so for this year alone and he is the surgon that gets all the children nationwide that need this particular surgery with this particular syndrome for the past 15 years. So I feel I owe this man everything I have evercome to aquire in my life as he is the one who saved her life to begin with jsut six short months ago.
After the proceedure she is somehat a changed child. I know it sounds odd but hear me out. She went in as my baby girl who I could pick out of a police line-up. Now she is swollen all over (Post op body shock/trauma defence) Where there is so much plasma (No not 1080p HD) produced by the body to kick in and help the healing process that the excess is distributed throughout the body. I ... . I feel at odds with so many things here as my feelings hang in the balance of confusion ... allmost like I want to rewind and somehow find a different method.
Reality will not let this happen. ... and I write:
What brought all of this on was her laying there drugged far beyond anyone in the first three rows of a dave mathews concert and she whimpered in her near comatose state. Morphene, chest x-rays, monitors , IVpumps, oxygen hiss all sing a symphony of mechanical support of this thing we call life. However I cannot hear the music ... none not a click, tweak , cycle . . nothing. All I can hear is soreness, pain, and struggle. I tried to keep myself composed with a look and feel of a Tim that we all know ... but it is a farce. Amy and my In-Laws think I am normal but far be it from the truth.
In fact I am so consumed with a complete and utter fixation on what she is going through that somehow I am trying to connect with her on a telepathic level and convey calm , control , and even scoop away some if not all of the burdon of bothersome discomfort and pain. Sounds strange to be so "Fixed" on such a thing but I have had many bad medical experiences that have happened to me that I somehow cannot get a firm grasp on what is happening in the now. I will admit Amy is my pillar of strength here. I am so insanely obsessed with I. V's and anything connected to the body that can be inadertently pulled out , breaking etc that I can't handle it. It happened to me not once but twice and both were nasty outcomes. This explains my drawl.
So Momentarily I set aside my fears and such and we are able to whisk her up to her room and get her comfortable so the next symphony can begin ... healing. Her operation was a very evasive one as the way to build out ones colon is to work from the inside out. Needless to say we need to keep her a still as possible. As we get her all settled in and the song begins to play I go home and Amy stays behind as I need to work.
Continued:
She went in monday for pre op setup,and cleanout. It was a tough sceene to deal with yet again as there were several setups that are new to me that she was hooked up to. The first was something some may know about which is a product called "Colyte" Or pronounced Goh-light-ly ... . Nuh uh not even remotely close to the meaning. Allmost like giving birth to satan's minions all at once. I have had it and I cannot begin to imagine how poor Ashy felt. On a good note thank god the colostomy setup allows for piping for direct "Ejection" shall we say.
So needless to say the poor thing was flat out upset at this going on. She also at this point had her IV started with pre op antibiotics. So over the next 6 hours she was cranky a bit as bottle feeding was a thing of the past and the ill effects of the mega laxative are wreaking havoc on the poor child's innerds.
Tuesday came and an aortic cathedor has been inserted and she is whisked into the O. R to begin the Colonic disection and reconstruction for the next 7 hours ... yes seven (45 minutes for recovery) hours. All went well and the surgon is absolutly pleased as this is his TENTH so for this year alone and he is the surgon that gets all the children nationwide that need this particular surgery with this particular syndrome for the past 15 years. So I feel I owe this man everything I have evercome to aquire in my life as he is the one who saved her life to begin with jsut six short months ago.
After the proceedure she is somehat a changed child. I know it sounds odd but hear me out. She went in as my baby girl who I could pick out of a police line-up. Now she is swollen all over (Post op body shock/trauma defence) Where there is so much plasma (No not 1080p HD) produced by the body to kick in and help the healing process that the excess is distributed throughout the body. I ... . I feel at odds with so many things here as my feelings hang in the balance of confusion ... allmost like I want to rewind and somehow find a different method.
Reality will not let this happen. ... and I write:
What brought all of this on was her laying there drugged far beyond anyone in the first three rows of a dave mathews concert and she whimpered in her near comatose state. Morphene, chest x-rays, monitors , IVpumps, oxygen hiss all sing a symphony of mechanical support of this thing we call life. However I cannot hear the music ... none not a click, tweak , cycle . . nothing. All I can hear is soreness, pain, and struggle. I tried to keep myself composed with a look and feel of a Tim that we all know ... but it is a farce. Amy and my In-Laws think I am normal but far be it from the truth.
In fact I am so consumed with a complete and utter fixation on what she is going through that somehow I am trying to connect with her on a telepathic level and convey calm , control , and even scoop away some if not all of the burdon of bothersome discomfort and pain. Sounds strange to be so "Fixed" on such a thing but I have had many bad medical experiences that have happened to me that I somehow cannot get a firm grasp on what is happening in the now. I will admit Amy is my pillar of strength here. I am so insanely obsessed with I. V's and anything connected to the body that can be inadertently pulled out , breaking etc that I can't handle it. It happened to me not once but twice and both were nasty outcomes. This explains my drawl.
So Momentarily I set aside my fears and such and we are able to whisk her up to her room and get her comfortable so the next symphony can begin ... healing. Her operation was a very evasive one as the way to build out ones colon is to work from the inside out. Needless to say we need to keep her a still as possible. As we get her all settled in and the song begins to play I go home and Amy stays behind as I need to work.
Continued:
Wednesday comes and I get out of work a bit early as I am dying to see the difference a day makes. And I whip home to feed the cats and get a couple things done before heading up to the hospital. My father in law calls and asks if he could ride up with me. No big deal I thought as I am more than happy to do so as he has sone so much for us I have no idea how to repay this man.
The ride up is an odd one and I can't quite put my finger on it but something is amiss. We get there and go upstairs and I can clearly pick up some ugly vibes. I was right and a few notes in the symphony have been a bit flat ... however they have kept it from me and with good reason.
She had her bloodwork done for the Post op , And post 24Hr and all that data is compared to preop. She is showing some abnormal cellular anomolies post op that cause enough concern that they are calling in the hemotology staff to run a ton of testing on her bloodwork. Somehow I quickly sopped up all of that info and packed it away in a mental box in the neverreaches of my mind. Is that wrong? Not sure but It must be a mechanical short circuit I have. I for the next 22 hours pray just about non stop thathis is a glitch. I know she is starting to come about as the morphene is being reduced but I am now psychologicly working on this new drama that unfolds before us.
The night closes and off home I drive. How, I have no clue as I can't quite make out the road with streetlights distorting my vision through the tears. Yeah this is a tough one to work on but I am not about to unpack that box. I work the day today trying like a freak not to pick up the phone and call Amy every last flipping time this comes to mind, so I await her phone call to tell me otherwise. I think I sent out some sort of signal to the gods of "Make it right" as Amy called and I heard her tell me that the tests came back negative. I have no clue how I reacted as I was way too busy in the back of my head lighting that box on fire and that I am sure that distracted the heck out of me as I do not remember what I said to her ... and I feel bad about that.
I book *** up to Yale to find a smiling semi swollen , baby girl having a bottle with no nose tube, and one IV gone and actually doing quite fine. Worlds different than yesterday. She is obviously in pain as the codine is now trying to keep the effects null as opposed to morphine but we all know the effectivenes of that stuff when we really hurt. I cannot wait until tomorrow to find yet more prognosis on a brighter stone.
At this point I am rambling and probably have not made any sense this entire dissertation but I gues 17 hours sleep since monday night will do that to someone. I have not told Amy yet about any of this including my non sleeping hobby that I now have. But soon enough I should be back to "Normal" (Or whatever that is)
I will write soon and hopefully more coherently:
TMTT
The ride up is an odd one and I can't quite put my finger on it but something is amiss. We get there and go upstairs and I can clearly pick up some ugly vibes. I was right and a few notes in the symphony have been a bit flat ... however they have kept it from me and with good reason.
She had her bloodwork done for the Post op , And post 24Hr and all that data is compared to preop. She is showing some abnormal cellular anomolies post op that cause enough concern that they are calling in the hemotology staff to run a ton of testing on her bloodwork. Somehow I quickly sopped up all of that info and packed it away in a mental box in the neverreaches of my mind. Is that wrong? Not sure but It must be a mechanical short circuit I have. I for the next 22 hours pray just about non stop thathis is a glitch. I know she is starting to come about as the morphene is being reduced but I am now psychologicly working on this new drama that unfolds before us.
The night closes and off home I drive. How, I have no clue as I can't quite make out the road with streetlights distorting my vision through the tears. Yeah this is a tough one to work on but I am not about to unpack that box. I work the day today trying like a freak not to pick up the phone and call Amy every last flipping time this comes to mind, so I await her phone call to tell me otherwise. I think I sent out some sort of signal to the gods of "Make it right" as Amy called and I heard her tell me that the tests came back negative. I have no clue how I reacted as I was way too busy in the back of my head lighting that box on fire and that I am sure that distracted the heck out of me as I do not remember what I said to her ... and I feel bad about that.
I book *** up to Yale to find a smiling semi swollen , baby girl having a bottle with no nose tube, and one IV gone and actually doing quite fine. Worlds different than yesterday. She is obviously in pain as the codine is now trying to keep the effects null as opposed to morphine but we all know the effectivenes of that stuff when we really hurt. I cannot wait until tomorrow to find yet more prognosis on a brighter stone.
At this point I am rambling and probably have not made any sense this entire dissertation but I gues 17 hours sleep since monday night will do that to someone. I have not told Amy yet about any of this including my non sleeping hobby that I now have. But soon enough I should be back to "Normal" (Or whatever that is)
I will write soon and hopefully more coherently:
TMTT
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Issue 128 – Digital Version
Digital Magazines
FREE!
TDR Test Drive - Digital Edition
Renew
Subscribe
Gift Subscriptions
Back Issues
Subscription Status
Address Change Form
Buyer's Guides
Ram Diagnostic Trouble Codes
The Perfect Collection
The Perfect Collection Vol. II
TSB Updates
Dodge/Cummins Historical Overview
Cameron Collection
What Makes Us Tick?
Product Showcase
Advertising
