Andi has been readmitted into Doernbecher's for dehydration. Her labs showed not the worst levels of dehydration she has endured, but serious enough to warrant hospitalization. Her g-tube is really the cause of this, due to *Charlie Sheen voice* 'LEAKAGE, ...DuH!!!'
The meeting went fairly well, however, the results aren't magical. They feel that this is not a failure of anything or anyone, but an undesired outcome. I call it all horseshit, and I'm still not placated. It's a failure of Andi and I was able to state that many times. So, gastric mucosa is not something they see very often. Lucky for us, we get to experience it! It is not a result of pulling the button or balloon taut, although I still plan to ask the new surgeon about it. Basically, they want to stitch up the hole (the hole in the stomach, and then the hole in her skin), and place the g-tube in a separate spot. The surgeon wants to put in an NJ (nasal tube to the intestines) while the holes heal - and help her put some weight back on. I have a load of questions to ask the surgeon... First though, we are doing a new swallow study tomorrow at 11:30. This way if by some serious change of luck that Andi is no longer aspirating... maybe we could just stitch it up and use hunger to start her feeding... but... that's step one. If they do the g-tube surgery, they will also do the ear tubes and scope her nose again under the same anesthetic.
In any case, we're in one of the last two wings of this hospital we have not yet been in. Maybe that's a good sign. Coming in, the kid next door was screaming and crying, "I want my Mommy!" I cried all the way to the hospital, so I almost joined him in unison. This is a hard that no parent should have to endure, repeatedly. Our situation could be worse, but, it doesn't make it any less difficult to deal with tough times.
I have to call tomorrow to see what is left on our hospitalization co-pay. That would be good to know. In the meantime, we sit here and wait for her IV, wait to be reweighed (she was 14 lbs this morning. Down from 14 lbs, 15 oz's only two weeks ago.), wait to speak to the Dr., and wait for Daddy Bean to arrive. We're all a bit fried and frazzled. Calgon!!!
4th Birthday Photo Session
Thursday, September 15, 2011
Wednesday, September 14, 2011
Nothing Says "I Love You" Like A Suppository!
*laughing at my headline!*
I'm so my Mother at times! It's funny how thankful I am for that sense of humor that had me rolling my eyes as a young brat. It's such a coping mechanism. And boy, have we needed a lot of coping mechanisms lately! You know it's bad when people assigned to work with you through programs to help Andi are suggesting you have a big ol' glass of wine! I've found that trying to tell stories has me forgetting what I was talking about, only to pick up the conversation again about five minutes later begging, 'what was I talking about?' It's been a bit chaotic, and lucky for me, it doesn't yet have me beating my head against a wall. Not yet.
So, since we've increased the Polycrack in her formula, Andi's digestion system has decided to halt. I have visions of Jamie Lee Curtis popping up at our front door trying to push some Activia on baby girl. While that would be great and all, Andi has been shunning her oral food lately. So, here it is day three of Operation Poo Watch, and a I resorted to a full bolus of Pedialyte, rather than formula. Did you know that constipation is often a result of dehydration?! Oh yeah, I can teach you a thing or two, really exciting dinner conversation type-o-stuff! So, I tried to remedy the lack of action, and emailed her Dr. to keep him informed of Operation Poo Watch. He wrote back the funniest thing. He said, "slip a pediatric glycerin suppository up the one orifice that doesn't leak." I had to laugh out loud at that, I needed a good laugh. In any case, being Nurse Mom, I tended to business and told her something I heard when punished by my parents, 'this hurts me more than it hurts you.' But low and behold, it worked magic starting with a roaring rooty toot of a pound of air, and then, Operation Poo Watch concluded.
Yes, I don't get out much and resort to poop talk for entertainment. Pity me. Actually, our months in the hospital confirmed that poop, or lack thereof, is very telling of a persons state of health. Least I'm not describing the color and consistency that the med students ask for... you can thank me later.
So, today, we went to Costco to get new tires for my truck. I've had to have air put in them several times and they can't find a leak, they just feel that the tires are too old. It's been a ridiculously long time since I bought tires last. So long, that they've gone up in price $200.-300. While driving the family home in the truck last night, Daddy Bean agreed that the truck was rather spongey and it no longer felt safe to drive at freeway speeds. I priced them out the other day, and just about swallowed my gum at the quote. I didn't like the ladies attitude, oh, ...and they didn't have stock, ...so I took my business elsewhere. I'm surprised AmEx hasn't called to ask what the hell we're doing charging so much this week! But, tires are one of the most important safety features, and being I drive the Bean around everywhere I go, it was important to get solid wheels on there.
So, as we sit here and reflect on the piles of sh*t going on in our lives, I must conclude that nothing says "I love you" like a suppository. Keeps life flowing.
Ah, Ma... I am so very much your daughter! I miss & love you Momma! ;0)
I'm so my Mother at times! It's funny how thankful I am for that sense of humor that had me rolling my eyes as a young brat. It's such a coping mechanism. And boy, have we needed a lot of coping mechanisms lately! You know it's bad when people assigned to work with you through programs to help Andi are suggesting you have a big ol' glass of wine! I've found that trying to tell stories has me forgetting what I was talking about, only to pick up the conversation again about five minutes later begging, 'what was I talking about?' It's been a bit chaotic, and lucky for me, it doesn't yet have me beating my head against a wall. Not yet.
So, since we've increased the Polycrack in her formula, Andi's digestion system has decided to halt. I have visions of Jamie Lee Curtis popping up at our front door trying to push some Activia on baby girl. While that would be great and all, Andi has been shunning her oral food lately. So, here it is day three of Operation Poo Watch, and a I resorted to a full bolus of Pedialyte, rather than formula. Did you know that constipation is often a result of dehydration?! Oh yeah, I can teach you a thing or two, really exciting dinner conversation type-o-stuff! So, I tried to remedy the lack of action, and emailed her Dr. to keep him informed of Operation Poo Watch. He wrote back the funniest thing. He said, "slip a pediatric glycerin suppository up the one orifice that doesn't leak." I had to laugh out loud at that, I needed a good laugh. In any case, being Nurse Mom, I tended to business and told her something I heard when punished by my parents, 'this hurts me more than it hurts you.' But low and behold, it worked magic starting with a roaring rooty toot of a pound of air, and then, Operation Poo Watch concluded.
Yes, I don't get out much and resort to poop talk for entertainment. Pity me. Actually, our months in the hospital confirmed that poop, or lack thereof, is very telling of a persons state of health. Least I'm not describing the color and consistency that the med students ask for... you can thank me later.
So, today, we went to Costco to get new tires for my truck. I've had to have air put in them several times and they can't find a leak, they just feel that the tires are too old. It's been a ridiculously long time since I bought tires last. So long, that they've gone up in price $200.-300. While driving the family home in the truck last night, Daddy Bean agreed that the truck was rather spongey and it no longer felt safe to drive at freeway speeds. I priced them out the other day, and just about swallowed my gum at the quote. I didn't like the ladies attitude, oh, ...and they didn't have stock, ...so I took my business elsewhere. I'm surprised AmEx hasn't called to ask what the hell we're doing charging so much this week! But, tires are one of the most important safety features, and being I drive the Bean around everywhere I go, it was important to get solid wheels on there.
So, as we sit here and reflect on the piles of sh*t going on in our lives, I must conclude that nothing says "I love you" like a suppository. Keeps life flowing.
Ah, Ma... I am so very much your daughter! I miss & love you Momma! ;0)
Tuesday, September 13, 2011
Gastric Mucosa and The Wino
Biopsy test results conclude that Andi has Gastric Mucosa. Good luck reading up on that, it's like reading latin. Basically, that's Andi's stomach lining coming up the g-tube hole. Initally, the surgeon we spoke to the other day said that the fix for that is, redo the surgery. Although, redoing the surgery is no guarantee that it won't happen again.
I've sent a lovely email to our pediatrician to forewarn him that we're pissed, and our meeting on Thursday is not going to be full of warm, fuzzy feelings. We were hospitalized at the end of March about the leaky g-tube, searching for reasons doing every test to determine why, and yet, this is the first we've heard of Gastric Mucosa. It's inexcusable. I went so far to state that we are not an ATM for Kaiser Permanente.
Andi's ear tubes surgery, although we just found out an hour ago that it's been canceled, was costing us just under $600. I don't know about you, but, I'm definitely not sitting on a pile of cash! I may have an American Express card, but it ain't black! There's a limit on there, and all the Kaiser charges, even simple co-pays are adding up!!! We're finding ourselves being killed by copays! The surgery was canceled as the anesthesiologist feels that Andi runs a risk of aspiration and therefore, they want to do the surgery at the hospital, not in their mini surgery clinic. Better safe than sorry, for sure, but just another glaring glimpse of how far from normal our lives are... this is the most common surgery done in the U.S., yet, for us... it's pretty big. They are seeing how quickly they can get Andi scheduled.
I'm feeling a Kaiser Permanente overload. Momma Bear is packing and ready to tear asses. Lucky for our pediatrician, I have a full day and a half to really calm down. Sadly though, this g-tube has been an issue for over a year, and here we are no where near having a resolution that will work for Andi. It feels like the many, many hands that have played a role in fixing Andi, have also failed Andi miserably. I'm beyond disappointed, I'm sad. Here's this kid with nothing more than a desire to make people laugh, and she has a heart of gold, yet - the people we're working with to make her bigger, better and stronger are failing her miserably. It's inexcusable.
As I just put as my facebook update, 'I'd like to take the Kaiser Permanente 'Thrive' media campaign and shove it up many asses!' Forgive my language, but if you're a parent, you should really understand my statement.
Andi's appointment with her pediatrican has just been increased in time, so we can spend more time discussing this latest development. I think Momma Bear is going to break the no-weekday wino rule tonight. Stress is quickly becoming my middle name, and that is not okay with me.
I've sent a lovely email to our pediatrician to forewarn him that we're pissed, and our meeting on Thursday is not going to be full of warm, fuzzy feelings. We were hospitalized at the end of March about the leaky g-tube, searching for reasons doing every test to determine why, and yet, this is the first we've heard of Gastric Mucosa. It's inexcusable. I went so far to state that we are not an ATM for Kaiser Permanente.
Andi's ear tubes surgery, although we just found out an hour ago that it's been canceled, was costing us just under $600. I don't know about you, but, I'm definitely not sitting on a pile of cash! I may have an American Express card, but it ain't black! There's a limit on there, and all the Kaiser charges, even simple co-pays are adding up!!! We're finding ourselves being killed by copays! The surgery was canceled as the anesthesiologist feels that Andi runs a risk of aspiration and therefore, they want to do the surgery at the hospital, not in their mini surgery clinic. Better safe than sorry, for sure, but just another glaring glimpse of how far from normal our lives are... this is the most common surgery done in the U.S., yet, for us... it's pretty big. They are seeing how quickly they can get Andi scheduled.
I'm feeling a Kaiser Permanente overload. Momma Bear is packing and ready to tear asses. Lucky for our pediatrician, I have a full day and a half to really calm down. Sadly though, this g-tube has been an issue for over a year, and here we are no where near having a resolution that will work for Andi. It feels like the many, many hands that have played a role in fixing Andi, have also failed Andi miserably. I'm beyond disappointed, I'm sad. Here's this kid with nothing more than a desire to make people laugh, and she has a heart of gold, yet - the people we're working with to make her bigger, better and stronger are failing her miserably. It's inexcusable.
As I just put as my facebook update, 'I'd like to take the Kaiser Permanente 'Thrive' media campaign and shove it up many asses!' Forgive my language, but if you're a parent, you should really understand my statement.
Andi's appointment with her pediatrican has just been increased in time, so we can spend more time discussing this latest development. I think Momma Bear is going to break the no-weekday wino rule tonight. Stress is quickly becoming my middle name, and that is not okay with me.
Friday, September 9, 2011
Biopsy Time!
After more than a year of massive leakage, the lady today (whom remembers us!) said that Andi might have "blah-blah-blah (medical term / foreign language)." Of course, now at this hour, I cannot remember what it was she said. Therefore, let me gross you out with the gory details. It's possible that the "red junk" filling the g-tube hole is not granulation tissue (a natural occurrence in g-tube holes), but it might actually be her stomach. Her actual fricken stomach might be coming up the hole. The only way to tell what it is, is to do a biopsy. So, she put some numbing agent on around the button, then she removed the button, got a sample of the red junk, and then put the button back in and filled it to maximum fill level, all while I tried to calm Andi down. She cried because it hurt. * insert my red flag here.* They got to hear Andi mumble through her tears, "all done!" several times.
If the results show it's her stomach, then they want to do the surgery again, and stitch up the current hole. This new placement is no guarantee that it wouldn't happen again. It'd be another surgery. Another hole. Another scar that she'll have to explain. We're also supposed to be having a new swallow study done soon. I already told the team we worked with today that if by chance we get lucky and the swallow study shows she is no longer aspirating, then Daddy Bean and I have already made the decision long ago that we're pulling the device and moving on. Maybe we're due for some good luck?!
Sadly, their scale showed Andi only weighed 6.5 kilos - which I'll spare you the conversion chart, it's only about 14.5 lbs. That's a big difference from the 14#15oz that we weighed in last week at her Dr's office.
We briefly stopped in to say hi to our nurse friends on 10N, where we spent most of last summer. They marveled at her hair, her size. It was fun! A friend of mine gave me a great idea I want to steal. She said that ten years ago she was hospitalized being extremely sick. She goes back every year to say 'hi!' and 'thanks!' to the nurses on the anniversary of when she was there. This past year, she went in to see them in her scrubs, with her badge & credentials, as now she is in nursing school. Prideful, she was able to show the nurses how much impact they can have on a life, and remind them of it each and every year. I think that is something Andi should start doing. We made her heart surgeon an update card, uh, that I have yet to actually mail..., but I think all the nurses (and there were a gazillion of them), deserve not only an update card and wave or a smile from Andi, but a yearly reminder of the impact they have had on a Bean. In between those yearly visits, a card for all of them (especially the night nurses!) to see her grow and change, but remember her out of the thousands of kids they see each year. I mean, they ALL remember her, *wink*, but... I want to keep them included in her wellness, not just in sickness. Wow, did that sound like reverse wedding vows, or what?! Eak.
We have several days to wait for the biopsy results. Then a meeting next week with her Dr. and one week from today, the ear tubes inserting surgery. A lot going on!
If the results show it's her stomach, then they want to do the surgery again, and stitch up the current hole. This new placement is no guarantee that it wouldn't happen again. It'd be another surgery. Another hole. Another scar that she'll have to explain. We're also supposed to be having a new swallow study done soon. I already told the team we worked with today that if by chance we get lucky and the swallow study shows she is no longer aspirating, then Daddy Bean and I have already made the decision long ago that we're pulling the device and moving on. Maybe we're due for some good luck?!
Sadly, their scale showed Andi only weighed 6.5 kilos - which I'll spare you the conversion chart, it's only about 14.5 lbs. That's a big difference from the 14#15oz that we weighed in last week at her Dr's office.
We briefly stopped in to say hi to our nurse friends on 10N, where we spent most of last summer. They marveled at her hair, her size. It was fun! A friend of mine gave me a great idea I want to steal. She said that ten years ago she was hospitalized being extremely sick. She goes back every year to say 'hi!' and 'thanks!' to the nurses on the anniversary of when she was there. This past year, she went in to see them in her scrubs, with her badge & credentials, as now she is in nursing school. Prideful, she was able to show the nurses how much impact they can have on a life, and remind them of it each and every year. I think that is something Andi should start doing. We made her heart surgeon an update card, uh, that I have yet to actually mail..., but I think all the nurses (and there were a gazillion of them), deserve not only an update card and wave or a smile from Andi, but a yearly reminder of the impact they have had on a Bean. In between those yearly visits, a card for all of them (especially the night nurses!) to see her grow and change, but remember her out of the thousands of kids they see each year. I mean, they ALL remember her, *wink*, but... I want to keep them included in her wellness, not just in sickness. Wow, did that sound like reverse wedding vows, or what?! Eak.
We have several days to wait for the biopsy results. Then a meeting next week with her Dr. and one week from today, the ear tubes inserting surgery. A lot going on!
Thursday, September 8, 2011
Portfolio
Since we're working on getting our supermodel contract, I figured I'd better put together Andi's modeling portfolio, in all my copious free time. So, here are a few recent photos that I pulled from the camera.
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| Supermodel Pout! |
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| Supermodel Innocence |
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| Supermodel Friendly |
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| The "J Lo" |
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| Unintentionally Flirty! |
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| Comedic Supermodel |
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| Supermodel Dopey |
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| Sweetness |
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| Standing Tall - with one shoe on! |
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| Supermodel Leanin' |
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| Engaged! |
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| The Freddie Mercury! |
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| Standing Super Tall & Straight!!! |
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| Supermodel Entourage |
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| Duh, Winning! |
Wednesday, September 7, 2011
Supermodel!
I was kind of silly today and entered Andi in Kathie Lee & Hoda's Cutest Baby Contest. It's some sort of modeling gig on the late Today Show. I sent three fairly recent photos, and a good synopsis of Andi. Biased or not, she's pretty dang cute inside and out.
Andi's OT came to work her out today. She showed her how she likes to eat a lot more lately. However, she pointed out that although she's swallowing the food, she's rather passive about it. Therefore, we've been given some tips on stimulating her mouth and getting her to push her food around her mouth with her tongue. We were also given some more tips on physical items to work on, such as putting weight on her feet. After her appointment, Andi promptly fell asleep in her high chair.
Andi has an appointment early Friday morning up at Doernbecher's to have the pediatric surgeon nurse 'the g-tube lady' look at Andi's g-tube. I'm not sure what she's planning, but, I believe we've seen her during our last two hospitalizations. It's another set of eyes on our problem, which, it's definitely still a problem! The other day, I had her high chair padding in the wash again, and after a feed in the simply plastic chair, I had a rather large puddle of Neocate goo on the hardwood floor to mop up. TREAT!
Lastly, they've approved my request to increase the calories in her formula. She's now on 36 calorie Neocrack or is that Neocrap? By doubling the Polycose. If I'm not mistaken, Polycose can also constipate, so that's just an added bonus. I've noticed lately that Andi is definitely getting longer. However, she's got the flattest stomach I've ever seen and her rib cage is rather visible. She looks like a supermodel. Therefore, she definitely should win the modeling job for Kathie Lee & Hoda in NYC. Although, I hope to fatten her up before she wins that contest!
Andi's OT came to work her out today. She showed her how she likes to eat a lot more lately. However, she pointed out that although she's swallowing the food, she's rather passive about it. Therefore, we've been given some tips on stimulating her mouth and getting her to push her food around her mouth with her tongue. We were also given some more tips on physical items to work on, such as putting weight on her feet. After her appointment, Andi promptly fell asleep in her high chair.
Andi has an appointment early Friday morning up at Doernbecher's to have the pediatric surgeon nurse 'the g-tube lady' look at Andi's g-tube. I'm not sure what she's planning, but, I believe we've seen her during our last two hospitalizations. It's another set of eyes on our problem, which, it's definitely still a problem! The other day, I had her high chair padding in the wash again, and after a feed in the simply plastic chair, I had a rather large puddle of Neocate goo on the hardwood floor to mop up. TREAT!
Lastly, they've approved my request to increase the calories in her formula. She's now on 36 calorie Neocrack or is that Neocrap? By doubling the Polycose. If I'm not mistaken, Polycose can also constipate, so that's just an added bonus. I've noticed lately that Andi is definitely getting longer. However, she's got the flattest stomach I've ever seen and her rib cage is rather visible. She looks like a supermodel. Therefore, she definitely should win the modeling job for Kathie Lee & Hoda in NYC. Although, I hope to fatten her up before she wins that contest!
Friday, September 2, 2011
Milestones!
Today, we conquered a milestone! While working on our OT homework, Andi knocked it out of the ballpark!
A little while later, she actually showed interest in sitting at her activity center. Normally, she just lays in front of it and kicks at it with her feet. Well, or steamrolls over it to get to the TV.
It was a brief few seconds, and had it been planned... I would've at least brushed her hair!
A little while later, she actually showed interest in sitting at her activity center. Normally, she just lays in front of it and kicks at it with her feet. Well, or steamrolls over it to get to the TV.
After one good fall bonking her head on the legs of the activity center, we quickly learned to pad the surrounding area to cushion her falls!
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