Megan's Gagging Isn't Any Better

[Guest Robbin]

I hope Megan is still improving! My son had a lot of problems with foot rashes-athletes foot meds never helped and it didn't look like athlete's foot -he had it on the top of the feet and not the toes or any blisters- someone told me to try zinc supplements and wow what a difference. I really hope this helps Megan-she has enough. It sounds like your dr. is pretty good, thank God. Megan is on our prayer list too.

Fiddle-Faddle- that sign --"Moo" --too funny

[TCA]

MOO -HA!!!!!!!!!!!! I think I'm going to put a sign on the door to the office where I do my pumping!

Meg's had a good day today!!!! yippee!!! Maybe eliminating the dairy, egg, corn, and rice is helping!!!!?????? Time will tell.

I think more of it has to do with all your prayers.

My pediatrician also mentioned the zinc. Can't find a supplement in liquid form, though. Any suggestions? The nutritioninst didn't know of anything. I've started pureeing chicken and trying to get it through her tube because the gerber one has cornstarch in it. It's REALLY hard to get it fine enough, though.

Thanks again for all the prayers. Megan is starting to just break out into a sweat a lot. I think this is another sign that surgery may be sooner than we think.

I think I'd go nuts without all of you!!!!

[Judyin Philly]

HI 'T'--WHAT ARE WE DOING UP AT THIS HR???..FORGET WHERE YOU ARE BUT IT'S 2:30 AM IN pHILLY

GOING TO TURN OFF COMPUTER AND SAY YOUR POST..SOOOOO GLAD MEGAN IS BETTER.

I KNOW FOR A FACT IT'S ALL THE POWERFUL PRAYERS FROM THIS FORUM OF FRIENDS THAT HAS AIDED IN MY HEALING....SO I'M PRAYING IT WILL BE SO FOR YOU AND PRECIOUS MEGAN.

MY CHIRO...THAT I TALK ABOUT ALL THE TIME AND SOOOO RESP MOSTLY FOR KEEPING IN FROM THE HOSPTIAL....GETS SUPPLIMENTS FOR HER PATIENTS B/C SHE WAS SO TIRED OF US HAVING TO PAY BIG BUCKS AT THE HEALTH FOOD STORES FOR THE PURE SUPPLIMENTS SHE WANTED US USING. sHE IS SO CAREFUL NOT TO HAVE GLUTEN, ETC. AND ALL NATURAL INGRED IN WHAT SHE STOCKS..SHE DOENS'T MAKE A CENT ON THEM IN FACT IT'S A REAL PAIN FOR HER BUT SHE IS SO DEDICATED TO HELPING HER PTS SHE JUST DOES IT....

SOOOOO I WILL ASK HER IF SHE HAS LIQUID ZINC..I KNOW SHE'S A BIG BELIEVER IN USING ZINC. I WILL ASK HER WHAT SHE HAS ON MONDAY...I'LL JUST CALL AND SEE. I'D BE HAPPY TO DO THAT FOR YOU AND CAN GIVE YOU THE VENDOR ETC AND GET IT AND MAIL IT EXPRESS TO YOU IF IT WOULD HELP YOU.

SHE'S THE ONE...NOT MY DR ..WHO WANTS ME ON ACIDOPHOLIS..(MUST LEARN HOW TO SPELL THAT DANG WORD) AND YEAST DEFENCE TO FIGHT OFF ME GETTING THE DREADED C-DIFF. INTERNIST WORRIED ABOUT THAT WITH THE ANTIB I'M ON BUT SURE DIDNT' KNOW ABOUT THE 2 SUPPLIMENTS THAT WOULD HELP ME...

SINCE THE PEDITRITION WAS MEGAN TO HAVE IT...IS THERE A REASON OTHER THAN EASIER FOR MEGAN TO TAKE THAT IT HAS TO BE LIQUID???

HAVE A GREAT NITE SLEEP. IF IN YOU FREE TIME YOU CAN GET A PIC OF MEGAN HAVING THE 'GIGGLES' WE'D LOVE TO SEE THAT...

HUGS AND LOVE

JUDY IN PHILLY

[chrissy]

well, i'm up with really restless legs tonight---i think it has something to do with meds i'm taking---it's just not usually as bad as tonight.

if megan is already taking reglan, you probably wouldn't have a problem taking it. if enough comes through the breast milk i guess you might have to adjust her dosage for a little while. i read one of my other posts to you and realized i had spelled prolactic??? reglan and domperidone both increase the level of prolactin.

[TCA]

Thanks so much guys. I wanted to report that Megan only gagged 3 times during the night!!!!!!! I'm avoiding corn (ecept in meds) and rice and I'm really starting to wonder if that is the reason. She feels sooooo good this morning. It does my heart good to see her like this.

Judy, thanks for chekcing on that. I just can't find it in a small enough dosage for her. It sounds like you have a wonderful dr.!!!!! Can I drive to see her from AL? I was up late pumping, the story of my life. i'll work on getting a new picture up for y'all - in my spare time - Ha! What were YOU doing up so late? You need the rest worse than me! It was only 1:30 here.

Chrissy, I did try to take a bit of Megan's reglan on Friday. I should have called the dr. then, but it was a crazy day and 5:00 before I realized it. I just have no idea how much to take. I was afraid to do too much because of her. I'll work on it tomorrow. My dad is having an AWFUL bout with RLS right now. He hasn't slept by about 6 hrs. the past 4 days with it. It just hit him with a vengence and it's driving him crazy. I hope you feel better soon.

Also, to add to the Saga, I think Cole mayhave chicken pox. He had the vaccinations, so maybe it won't be too bad. I just hope we can keep Meg from getting it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Judyin Philly]

Tanya-forwarded you last post to my chiro...let's keep Coyle in a bubble poor little guy

you sure have your hands, arms and heart full right now.

hugs and prayers

judy in philly

[Rachel--24]

TCA,

I've just been going through the posts on this thread...I had no idea how much you were going through with little megan. I was crying as I read the first pages but now I'm really happy to read that she's feeling a little better. I'll be praying for you both. I cant tell you how much I admire your strength through all of this. You are an amazing mom!

[TCA]

Rachel,

I'm not an amazing Mom, just a Mom trying to do the best i can. That doesn't even seem good enough most of the time...... Thanks for the prayers.

Judy - thanks for forwarding that along. Hopefully we can come up with something

Megan had a pretty good day until about an hour ago and she started retching REALLY bad and a LOT of blood came up. We called the GIs. They said it was just a tear in her esophogus and to up her carafate. The didn't prescribe any nerve pills for me, though. I'm going to need them soon if this continues!!!! She playing happily beside me now. I'll be glad if/when we can get this figured out.

My son does have chickenpox, but it's a very light case. Both kids have had the vaccinations, so hopefully Meg won't get it. He was already through the most contagious part before we realized what he had. We thought it was bug bites until really late last night. We'd been treating the "bug bites" for 2 days by then. Since then we've tried to keep the kids separated.

Keep the prayers coming. That and a good night's sleep will make everything better in the morning, I'm sure.

[Judyin Philly]

Tanya--EXCUSE ME---YOU ARE AN AMAZING MOM....WHO IS DOING A GREAT JOB AGAINST ALL ODDS.

I'm not an amazing Mom, just a Mom trying to do the best i can. That doesn't even seem good enough most of the time...... Thanks for the prayers.

I'LL CALL FIRST THING IN THE MORNING AS HAVEN'T CK'D EMAIL TODAY.

Judy - thanks for forwarding that along. Hopefully we can come up with something

THIS MUST HAVE BEEN SO SCARY!! HAS THIS HAPPENED BEFORE????

Megan had a pretty good day until about an hour ago and she started retching REALLY bad and a LOT of blood came up. We called the GIs. They said it was just a tear in her esophogus and to up her carafate.

BUMMER... YOU NEED SOMETHING ...MAYBE A LITTLE 'MELLOW YELLOW' IT'S BEEN A GOOD FRIEND TO ME ON OCASSION.

The didn't prescribe any nerve pills for me, though. I'm going to need them soon if this continues!!!!

THIS IS GOOD She playing happily beside me now. I'll be glad if/when we can get this figured out.

Keep the prayers coming. That and a good night's sleep will make everything better in the morning, I'm sure.[/color

YOU GOT IT...HOPE YOU CAN GET A FULL NITE AS WELL AS LITTLE MEGAN.

WILL LET YOU KNOW ASAP WHEN I FIND OUT AND SHE'D KNOW FROM THE THREAD MEGS HISTORY AND ESP SINCE THE PED..LIKED THE IDEA.

HUGS AND SLEEPING 'WISHES' FOR YOUR BOTH.

JUDY

[TCA]

Thanks Judy - you're always making others feel better even when you feel terrible.

Well, the cardiologist checked Megan out today and didn't have a lot different to say. Her BP was good and her O2 sats was 76, so still above the 69 mark that means surgery early. I told him I thought she was starting to swell. he poked around and said it wasn't swelling, it was fat! She weighed 15lbs. 15 oz.!!!!!!! That's a 14 oz. gain in a week. I guess the 20 hr. continuous feeds are helping!!!

Her gagging has been much better today too. Her eczema is looking some better too. I don't know if this is from food eliminations, or the chicken I've been trying to give her, but I'm glad for it!

Cole is doing fine with his light case of chicken pox. Meg has had the shot and I've had them, so she should be getting antibodies from the breast milk. I hope she doesn't get them!!!!!! I know a lot of people are opposed to them, but right now I'm thanking God for vaccinations!!!!!

Thanks for all the prayers. Keep 'em up!

[Tony'sMom]

I'm glad to hear that Megan is having some better days. I will continue to keep you and your family in my thoughts and prayers.

Big hugs to you

[Judyin Philly]

TANYA,

CALLED MY CHIRO AT 9:00 BUT HAVEN'T BEEN ABLE TO GET BACK TO POST YOU...WAS TRYING TO POST TO POOR NINI...DARN IT...SHE TRIED SO HARD TO SAVE HER KITTY.

NO MEGAN...RECEPTIONIST SAID SHE DIDN'T CARRY THE LIQUID ZINC BUT SHE PUT ME ON HOLD AND TALKED TO CHIRO AND CAME BACK AND SAID " DR HAD READ YOUR POST TANYA...SHE COULD ORDER SOME FOR US IF WE WANTED...I SAID I'D CK WITH YOU AND IF SHE FIND THE 'SUPPLIER' YOU AND I COULD PROBABLY HANDLE IT. sHE DID OFFER TO ORDER SOME FOR YOU.

SHE HAS HRS FROM 7;30-9;30 USUALLY SO DIDN'T REALLY EXPECT HER TO LET ME KNOW TONIGHT BUT I MIGHT HEAR FROM HER TOMORROW AS SHE DOESN'T HAVE PTS.

I SEE HER ON WED SO I'LL GET THE INFO THEN

MUST ADMIT I DON'T KNOW ALL THE PROBLEMS WITH MEGAN --KNOW SHE HAS A HEART DEFECT AND WILL PROBABLY NEED SURGERY AT SOME PT CORRECT? IS SHE ON A FEEDING TUBE AS YOU SAID 'SHE WAS ON 20 HR CONTINIOUS FEED" NOT SURE IF THAT IS THE SAME BUT AS I SAID YESTERDAY...HER 7 YEAR OLD IS ON A FEEDING TUBE SHE SURE KNOWS ABOUT THIS FIRST HAND.

I'LL LET YOU KNOW WHAT I FIND OUT.

HANG IN THERE.

JUDY IN PHILLY

[mommyetb]

Hey girl! I was just reading all your posts about keeping up breastmilk etc. You HAVE to keep taking in enough calories in order to keep up production. I think the diet you were on was too restrictive. I think you really hit on something when it comes to her gagging being caused from her heart. I would run with that. Reintroduce foods back into your diet but keep eliminated the ones she is allergic to. You can also get a nasal spray made from oxytocin ( the horomone that causes let down). This helps a lot. Have you tried changing pumps? Sometimes changing your pump to one that uses a different suction rhythm will help with long term pumping. Also, massaging your breasts while pumping will get more milk out. You can also try having let down Before you pump that sometimes gets more milk out. Warm packs of course help, pumping after orgasm sometimes works (oxytocin is released during orgasm) Change your pumping times during the day to establish a differest schedule much like a baby does when they grow.

I hope some of this helps. I really feel as though the gagging is not so much from you but from her heart.

You are in our prayers! HUGS to you and little Meg!

Taffy

[TCA]

Judy,

THANKS!!!!!!!!!!!! Megan has pulmonary atresia with a large VSD. Her surgery is planned for 8/15. She also has celiac and a milk and egg allergy and severe reflux I'll be glad to order it with the info. I really appreciate you checking on this.

Tanya

[Judyin Philly]

Judy,

THANKS!!!!!!!!!!!! Megan has pulmonary atresia with a large VSD. Her surgery is planned for 8/15. She also has celiac and a milk and egg allergy and severe reflux I'll be glad to order it with the info. I really appreciate you checking on this.

Tanya

TANYA--I'M SO GLAD TO HELP.

IF YOU CAN SEND ANY MORE INFO (THE OTHER ALLERGIES WILL HELP HER DECIDE WHICH ONE IF THERE IS MORE THAN ONE TO LOOK INTO) WHAT IS HER AGE AND WEIGHT..THINK YOU POSTED HOW MUCH SHE'D GAINED SOMEWHERE BUT IT'S LATE AND I'M SPACIE AT THIS POINT......I'LL BE SURE TO SEND THE INFO ASAP FOR YOU UNTIL THEN, KEEP THE FAITH, FRIEND.

JUDY

[TCA]

TANYA--I'M SO GLAD TO HELP.

IF YOU CAN SEND ANY MORE INFO (THE OTHER ALLERGIES WILL HELP HER DECIDE WHICH ONE IF THERE IS MORE THAN ONE TO LOOK INTO) WHAT IS HER AGE AND WEIGHT..THINK YOU POSTED HOW MUCH SHE'D GAINED SOMEWHERE BUT IT'S LATE AND I'M SPACIE AT THIS POINT......I'LL BE SURE TO SEND THE INFO ASAP FOR YOU UNTIL THEN, KEEP THE FAITH, FRIEND.

JUDY

Thanks Judy,

She's 14 mos. old, 16 lbs. The milk and egg allergies are not severe and not even really confirmed. She had a negative skin allergy test, put a Moderatley positive RAST tests, so I'm eliminating them to be sure. I'm also eliminating corn and rice for a trial right now. She gets a little corn here and there because of the meds I'm on. I'm really starting to think she has issues with rice. I'll add it back in another week and see how she reacts.

Last night her Mic-Key button for her feeding tube got clogged while trying to get the chicken in. I took 1.5 hrs trying to get it unstopped and it just wouldn't unclog. I had misplaced the spare one, but finally found it and replaced it. It's one of those things you just need every few months, so you put it somewhere where you won't forget where it is, then can't remember where it is!!!

Hope you're feeling better today!

Hugs,

Tanya

[Cheri A]

Just checking in to see how T and Meg are doing today...

[Webcrystal]

Fenugreek is an herb that is supposed to help with lactation. You might want to try that before Reglan (of course I'm biased I'm allergic to Reglan) ... anyway here's one article on it

Open Original Shared Link

It's considered very safe. You can also try a supplemental system where a tube goes (with neocate or other form.) down by the breast while she is feeding. Helps many people be able to keep bf. I think it's good you gave up rice .. amazingly enough tho it's touted as being "hypoallergenic" I've know about 1/2 dozen people that are allergic to it.

[TCA]

Well, we just got back from the gastric emptying study and it's not good news. She is refluxing constantly and aspirating frequently into her right lung. There is so much damage done by the fundo coming undone, they don't think anything can be done short of another fundo. The radiologist agreed that the fundo shouldn't have been done in the first place, but it coming undone is what has caused all of the present issues. It just breaks my heart that I let them do that to her even though my instincts told me not to. They said it was the only thing that would work and it has caused her more health issues than anything ever has. He also said that they could try a G-J tube to but the food directly into her intestines, hopefully avoiding the aspirations. I think this is the next step we want to try, but her open heart surgery is scheduled for less than 2 mos. and her sats are dropping, so I don't know if the GI folks will agree to a less invasive approach since she will have to be ready for the surgery. I just feel like it's all spiraling out of control. We can't fix one thing without hurting everything else. I'm soooo torn. Please continue to pray. Pray for healing and wisdom.

I also have a Rx for Reglan now, so thanks for the suggestions on that front.

Webcrystal - i've tried fenugreek without much success. Meg won't nurse and we've done supplemental nursers when she would. It's just a matter of being able to pump enough for her. Thankfully, we haven't run out yet.

[dlp252]

Well, we just got back from the gastric emptying study and it's not good news. She is refluxing constantly and aspirating frequently into her right lung. There is so much damage done by the fundo coming undone, they don't think anything can be done short of another fundo. The radiologist agreed that the fundo shouldn't have been done in the first place, but it coming undone is what has caused all of the present issues. It just breaks my heart that I let them do that to her even though my instincts told me not to. They said it was the only thing that would work and it has caused her more health issues than anything ever has. He also said that they could try a G-J tube to but the food directly into her intestines, hopefully avoiding the aspirations. I think this is the next step we want to try, but her open heart surgery is scheduled for less than 2 mos. and her sats are dropping, so I don't know if the GI folks will agree to a less invasive approach since she will have to be ready for the surgery. I just feel like it's all spiraling out of control. We can't fix one thing without hurting everything else. I'm soooo torn. Please continue to pray. Pray for healing and wisdom.

I'm so sorry! I've just prayed and will continue to pray for Megan and you and the doctors.

[Fiddle-Faddle]

Lots more prayers coming your way! You are such a wonderful mother.

Who suggested the fundo in the first place? (I hope they are not only apologizing, but moving heaven and earth to find a good solution--one that YOUR gut says is good!)

[schuyler]

I'm sending prayers your way. I hope that things start to improve for Megan soon.

[Judyin Philly]

Hi Tanya--

I'm so sorry that the news wasn't good.

I haven't been on the computer today...ran again trying to get new stockings the others were cutting off ciruclation...

anyway saw the chiro today and she was researching for you before me apt. she wanted to know if Megan was celiac..or had intollerances and if you had celiac...i forget...and just haven't looked at your info on main info page...rough day here in PA...

she makes sure her suppliments are free of the major 8 allergic additives and gluten for sure...so if there is anything else like eggs and one other thing you wrote me about she has anything else???

she's going to email me with suppliers her hrs aren't even over till 9-9:30 tonight. what a long day she has.

anyway she's a strong believer in zinc and thinks the liquid will be easier for you for sure. she also knows alot about nursing etc. so wanted her to get the past posts and she's read all them

i'll let you know as soon as i hear..

here is what i posted to her after i read your post today.

Love and prayers for strength for you and healing for Megan.. how are the 'pox'?

judy

-----Original Message-----

From: Judy Lockyer [mailto:judy.lockyer@verizon.net]

Sent: Wednesday, June 21, 2006 4:05 PM

To: Lilian Meier

Cc: judy.lockyer@verizon.net

Subject: Tanya--liquid zinc!!!

Judyin Philly, Lilian, I just feel so badly for her..she is scared and tying so hard. Other child now has chicken pox...when it rains it seems to pour on her...

Thanks for a wonderful treatment today and your support as usual.

Love and hugs

judy

----------------------------------------------------------------------

Well, we just got back from the gastric emptying study and it's not good news. She is refluxing constantly and aspirating frequently into her right lung. There is so much damage done by the fundo coming undone, they don't think anything can be done short of another fundo. The radiologist agreed that the fundo shouldn't have been done in the first place, but it coming undone is what has caused all of the present issues. It just breaks my heart that I let them do that to her even though my instincts told me not to. They said it was the only thing that would work and it has caused her

more health issues than anything ever has. He also said that they could

try a G-J tube to but the food directly into her intestines, hopefully avoiding the aspirations. I think this is the next step we want to try, but her open heart surgery is scheduled for less than 2 mos. and her sats are dropping, so I don't know if the GI folks will agree to a less invasive approach since she will ha!

ve to be ready for the surgery. I just feel like it's all spiraling out of control. We can't fix one thing without hurting everything else. I'm soooo torn. Please continue to pray. Pray for healing and wisdom.

I also have a Rx for Reglan now, so thanks for the suggestions on that front.

Webcrystal - i've tried fenugreek without much success. Meg won't nurse and we've done supplemental nursers when she would. It's just a matter of being able to pump enough for her. Thankfully, we haven't run out yet.

[AndreaB]

Tanya,

I'm so sorry you got bad news today.

I don't know half of what you are talking about (fundo, sats) but hope that surgery will correct most of the problems, if not all.

Please continue to keep us posted.

[Guest Robbin]

Well, we just got back from the gastric emptying study and it's not good news. She is refluxing constantly and aspirating frequently into her right lung. There is so much damage done by the fundo coming undone, they don't think anything can be done short of another fundo. The radiologist agreed that the fundo shouldn't have been done in the first place, but it coming undone is what has caused all of the present issues. It just breaks my heart that I let them do that to her even though my instincts told me not to. They said it was the only thing that would work and it has caused her more health issues than anything ever has. He also said that they could try a G-J tube to but the food directly into her intestines, hopefully avoiding the aspirations. I think this is the next step we want to try, but her open heart surgery is scheduled for less than 2 mos. and her sats are dropping, so I don't know if the GI folks will agree to a less invasive approach since she will have to be ready for the surgery. I just feel like it's all spiraling out of control. We can't fix one thing without hurting everything else. I'm soooo torn. Please continue to pray. Pray for healing and wisdom.

I also have a Rx for Reglan now, so thanks for the suggestions on that front.

Webcrystal - i've tried fenugreek without much success. Meg won't nurse and we've done supplemental nursers when she would. It's just a matter of being able to pump enough for her. Thankfully, we haven't run out yet.

I am so sorry Meg is still suffering with so much. The stress has got to be tremendous. I am praying for you all. I have a firm belief that "moms know their children best" and that the doctors go overboard with tests and treatments when they are unsure of themselves. Is a fundo a stomach tube? My FIL had one and it caused him tremendous reflux/coughing. He was better if he sat upright for a couple of hours after each feeding. I am not sure if this is what Meg has? It was about six inches above his belly button, I think. This was for an adult, so not sure what they do for little ones. It's been 15 years, so my memory is not too clear. He was ok if he was sitting in a chair and I hung the bag on an IV hook, but if he was reclining at all he had a lot of burping up. Keep us posted on how everyone is doing and just to vent, God knows you need to vent, right? Prayers and Hugs,

Robbin