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Megan's Gagging Isn't Any Better

TCA

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Guest nini
Guest nini
Posted

my thoughts and prayers are with you and your little one... may the Dr.s be guided to do the right things and help her little body to heal, praying for a miracle. {{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}

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  • Replies 882
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VydorScope Proficient
VydorScope
Posted
REALLY tired, so making it short and sweet. The drs. all agreed on no fundo for now because of her heart situation. After heart repair, she might be strong enough. going ahead with scope next Wed. The GI gravely said he is VERY concerned at her not gaining weight and is considering TPN. Cardiology balked at this because of risk of infection with PICC line right before surgery. Surgery may be sooner than planned because of all of this. Nutritionist gave me a plan to increase calories with Neocate, but it's making D worse. Ped. said to try Neocate 1 + again instead. My head is spinning, so going to sleep on it before making any decisions! Thanks for the prayers.

Hugs,

Tanya

Tanya, can you get all the docs in one room to talk about this, or at least on a confrence call?

evie Rookie
evie
Posted
Tanya, can you get all the docs in one room to talk about this, or at least on a confrence call?

Praying here for wisdom for you, family and dr's to make the right decision for little Megan. so she can get her surgery too and be a well child. :):rolleyes::) evie

Guest Robbin
Guest Robbin
Posted

Tanya, I read your thread everyday too and am praying for precious little Megan. I agree that the drs all need to talk together and positively be on the same page with her treatment with no doubts of one or the other. This kind of disagreement amongst them only makes you more stressed about the situation. I hope you have been able to get some rest and have someone there to help with things. I wish I could do something for you. Sending prayers and comforting thoughts your way. :)

Cheri A Contributor
Cheri A
Posted

((Tanya)) ~ thank you for posting the appointment results from yesterday. I agree that all the drs need to get together by phone or in the same office to come up with a positive plan for Meg!! Prayers for wisdom, strength and healing for Meg!!

TCA Contributor
TCA
Posted
  • Author

Thanks so much for the hugs and prayers. I definately feel the cyber LOVE! :P Meg just doesn't feel wel lon the formula, but she can't tolerate the avocado at all through the intestinal feeds. We HAVE to get calories in her because of her losing weight. Starting the Neocate 1 + today. Hopefully that will work. she's only had D once today, so maybe it's getting better. Spent all morning on the phone with various nurses and nutrtionists to figure things out. The Vandy Drs. are supposed to talk today and tomorrow and get back with me. Her primary cardiologist was out yesterday, but his backup is one of my favs, so was glad to see her. She will do a good job of relaying info to him today. It's just so much with her. I guess you could say cardiology is driving the bus, though, since her heart is the most critical and the other things are related in some way. The other drs. are confering through them, though. The scope is next wed., so if there's anything to find, please pray for them to find it then and be able to fix it. Thanks so much for all the support each of you give. It really means the world!

jenvan Collaborator
jenvan
Posted
Thanks so much for the hugs and prayers. I definately feel the cyber LOVE! :P Meg just doesn't feel wel lon the formula, but she can't tolerate the avocado at all through the intestinal feeds. We HAVE to get calories in her because of her losing weight. Starting the Neocate 1 + today. Hopefully that will work. she's only had D once today, so maybe it's getting better. Spent all morning on the phone with various nurses and nutrtionists to figure things out. The Vandy Drs. are supposed to talk today and tomorrow and get back with me. Her primary cardiologist was out yesterday, but his backup is one of my favs, so was glad to see her. She will do a good job of relaying info to him today. It's just so much with her. I guess you could say cardiology is driving the bus, though, since her heart is the most critical and the other things are related in some way. The other drs. are confering through them, though. The scope is next wed., so if there's anything to find, please pray for them to find it then and be able to fix it. Thanks so much for all the support each of you give. It really means the world!

I will pray just that and mark it down my calendar...

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schuyler Apprentice
schuyler
Posted
I will pray just that and mark it down my calendar...

I'll do the same

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

FOrgive me for being ignorant here--if the fundo coming undone is the cause of all the gagging and reflux, isn't THAT stressing her heart and keeping her from gaining (burning calories from the energy expended by gagging and choking and losing more calories by barfing them up)? I know you didn't want the funo in the first place, and obviously you were right, but at this point might it be possible that having it redone (assuming they do it right this time)could improve things enough to delay the heart surgery?

I also agree on getting all the doctors in one room to discuss all the possibilities. Surely they can spare an hour from their busy important schedules to make sure they save the life of one little baby...

I'm praying for you and Megan every night, let me know what else I can do!

Judyin Philly Enthusiast
Judyin Philly
Posted

This is a good way to put it*****

I guess you could say cardiology is driving the bus, though, since her heart is the most critical and the other things are related in some way. The other drs. are confering through them, though. The scope is next wed., so if there's anything to find, please pray for them to find it then and be able to fix it.

***we will not stop praying lost count of how many I shot up today, tanya...we will pray for them to fix'what ever it is'

bless you both.

love and hugs.

judy

Rachel--24 Collaborator
Rachel--24
Posted

I've been reading your updates and praying for Meg. I hope something positive happens on Wed. I agree with everyone else about the doctors all getting together on this one. I pray Meg starts gaining so she can be strong for her surgery. Hang in there.

AndreaB Contributor
AndreaB
Posted

Tanya,

I too hope that the doctors can all get together and work out a treatment plan. I also hope that the neocate works better this time since it will bypass her stomach. Thank you for keeping us posted...we will continue to pray.

mouse Enthusiast
mouse
Posted

Tanya, I also marked Wednesday for prayers. Many Hugs.

Cheri A Contributor
Cheri A
Posted

((Tanya)) ~ more hugs and prayers tonight.. I also have marked next Wednesday on the calendar!!!

TCA Contributor
TCA
Posted
  • Author

I posted an update last night and now I can't find it. Oh well, here we go again.

Meg had a bad day yesterday. Very clingy and whiny, which is not like her at all. She gagged too many times to count during the night.

thanks for all the prayers. One big improvement is the D. Only 2 dirty diapers yesterday. MUCH better. She also seems to be tolerating the Neocate 1+ at 24 calories, so we'll go up to 26 calories today.

The drs. at Vandy are talking. Her main cardiologist wasn't there, I guess they take vacations too. ;) He will be today and is getting everyone on the same page to talk. They didn't have time to talk between our appts. on Wed. since they were back to back. That's why I got everything unfiltered by them talking first.

Fiddle Faddle - They didn't come out and say it, but what they were saying is that they don't know that she would survive another fundo before open heart surgery. The 2 coupled so close together might do her in if the fundo itself didn't. The surgeon said it's possible a fundo may not be necessary since most kids outgrow reflux by 2 without help. This was a different surgeon than the one who did the fundo 1st. Wish I'd seen him then. I guess I need to clarigy that the retching she is doing now is dry heaves, so nothing coming up with the tube in her intestines, except for stomach juices occasionally, so she's not losing her food now.

thanks for all the concern. Hopefully she'll feel better today.

mart Contributor
mart
Posted

Tanya, we're here, praying for Meg and you. Wishing all goes smoothly. I know some docs are afraid of TPN for her now, but if she could have it - even for a short while, it makes all the difference in the world. Please let us know the test results as soon as you have a free minute. Again, we're all here praying.

evie Rookie
evie
Posted

My prayers are for you 2 plus family, for healing, patience & all the things you need :):lol: evie

Judyin Philly Enthusiast
Judyin Philly
Posted

JUST GETTING ON LINE AND CK'N ON YOU

GUESS MEG'S IS BETTER..LESS 'D' IS GOOD AND FOOD IS STAYING DOWN..SO THIS IS ALL GOOD RIGHT?

HUGS AND PRAYERS STILL COMING.

DID ALOT OF PRAYING FOR YOU LAST NITE.

LOVE

JUDY

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Hope you and Megan are having agood night tonight!

TCA Contributor
TCA
Posted
  • Author

Heard back from GI dr. They are going to keep Megan next week after the scope and pump her full of TPN to get a little boost in calories until her IV wears out. I'm also supposed to go back on dairy and eggs to make sure tests are accurate. I had forgotten how much I LOVE dairy. I'll be in heaven over the weekend!!! I'm also supposed to compose a list of 3-6 foods for additional RAST testing while we have an IV that works. She's already been tested for the major 8, plus corn. I know I want rice on the list. any suggestions? I eat a lot of tomatoes, so that may be good. I don't really know. The D is starting back this afternoon after going up to 26 cal formula. I'll give her a day or two to see if it will subside, then change if we need to. It's hard to know what to do. She needs to bump up calories sooo bad. I hope she can settle out. She felt better for about 1 hr. before bed tonight. My husband is working LONG hours with the shuttle launch, so she may just be perking up for him. she's a daddy's girl, even if Mommy is her comforter.

Hope you all have a nice weekend.

Hugs and thanks for the prayers.

Tanya

Judyin Philly Enthusiast
Judyin Philly
Posted

THANKS FOR THE UPDATE. MAY YOU ALL HAVE A GOOD WEEKEND ..YOU HAVING DAIRY (THAT'S A GOOD GOOD TREAT) HUGS TO MEG'S AND HOPE LAUNCH GOES WELL. NOT SURE OF TIME BETTER CK MSNBC NOW.

THINKING AND PRAYING FOR YOUR FAMILY.

ENJOY YOUR WEEKEND FRIEND.

HUGS

JUDY

Heard back from GI dr. They are going to keep Megan next week after the scope and pump her full of TPN to get a little boost in calories until her IV wears out. I'm also supposed to go back on dairy and eggs to make sure tests are accurate. I had forgotten how much I LOVE dairy. I'll be in heaven over the weekend!!! I'm also supposed to compose a list of 3-6 foods for additional RAST testing while we have an IV that works. She's already been tested for the major 8, plus corn. I know I want rice on the list. any suggestions? I eat a lot of tomatoes, so that may be good. I don't really know. The D is starting back this afternoon after going up to 26 cal formula. I'll give her a day or two to see if it will subside, then change if we need to. It's hard to know what to do. She needs to bump up calories sooo bad. I hope she can settle out. She felt better for about 1 hr. before bed tonight. My husband is working LONG hours with the shuttle launch, so she may just be perking up for him. she's a daddy's girl, even if Mommy is her comforter.

Hope you all have a nice weekend.

Hugs and thanks for the prayers.

Tanya

VydorScope Proficient
VydorScope
Posted
Heard back from GI dr. They are going to keep Megan next week after the scope and pump her full of TPN to get a little boost in calories until her IV wears out. I'm also supposed to go back on dairy and eggs to make sure tests are accurate. I had forgotten how much I LOVE dairy. I'll be in heaven over the weekend!!! I'm also supposed to compose a list of 3-6 foods for additional RAST testing while we have an IV that works. She's already been tested for the major 8, plus corn. I know I want rice on the list. any suggestions? I eat a lot of tomatoes, so that may be good. I don't really know. The D is starting back this afternoon after going up to 26 cal formula. I'll give her a day or two to see if it will subside, then change if we need to. It's hard to know what to do. She needs to bump up calories sooo bad. I hope she can settle out. She felt better for about 1 hr. before bed tonight. My husband is working LONG hours with the shuttle launch, so she may just be perking up for him. she's a daddy's girl, even if Mommy is her comforter.

Hope you all have a nice weekend.

Hugs and thanks for the prayers.

Tanya

Tanya, what does this mean for the heart surgy?

As for the foods, look at what your currently eating, and thing you think would be good for her to eat, and that will give you a list to play wiht. After that cross of everything that you think you already know the anwer to, and that probably get you a good list to hand them.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Fish was one of the first foods we gave our babies, especially salmon. Salmon is low on the mercury scale, but I think there may be other contaminants to deal with. Then again, same is true for all foods but organic. Is there organic fish? Anyway, it was easy for them to digest, and high in nutritional value AND fat.

I hope Vanderbilt is nicer to little chldren than Pittsburgh Children's Hospital was after Michael's heart surgery--they wouldn't let me hold him, they INSISTED he had to be in one of those awful cages (they called it a crib, but I swear it was a cage) until his cardiologist came in and insisted that they give me whatever liability waiver forms they needed me to sign and get an adult-sized bed in there so that I could hold him all night (we were there 4 nights). We didn't have this problem when he was at Allegheny General Hospital--they let me hold him, nurse him whenever, and didn't make me sign anything.

Still praying --several times a day! Hang in there.

VydorScope Proficient
VydorScope
Posted
Fish was one of the first foods we gave our babies, especially salmon. Salmon is low on the mercury scale, but I think there may be other contaminants to deal with. Then again, same is true for all foods but organic. Is there organic fish? Anyway, it was easy for them to digest, and high in nutritional value AND fat.

I hope Vanderbilt is nicer to little chldren than Pittsburgh Children's Hospital was after Michael's heart surgery--they wouldn't let me hold him, they INSISTED he had to be in one of those awful cages (they called it a crib, but I swear it was a cage) until his cardiologist came in and insisted that they give me whatever liability waiver forms they needed me to sign and get an adult-sized bed in there so that I could hold him all night (we were there 4 nights). We didn't have this problem when he was at Allegheny General Hospital--they let me hold him, nurse him whenever, and didn't make me sign anything.

Still praying --several times a day! Hang in there.

As for Vandy... when my son was in, as soon as he was stable enough to move they brought us to him and whe we arrived a nurse was holding him in a rocking chair. NOthing like what you describe. So TCA is in good hands based on my expernce! :)

Satori Newbie
Satori
Posted

I'm skipping a lot of replies but the reflux will get worse with an empty stomach and cause retching and she sounds like an EE/EG kid. Have you had the ruled out?

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