Megan's Gagging Isn't Any Better

[TCA]

Sorry for all the medical terms - when you live it evry day, you forget that other don't. Be glad you don't understand!!!!

The fundoplication (a surgery to correct reflux) was done last summer because she was projectile vominting. OUr local GI sent us to Vanderbilt to see on of his colleagues there. The pareticular cardiologist on rotation at the time was convinced the problem was reflux and said there was no need for us to see GI and got a surgeon to come see her. The surgeon and cardiologist agreed the only thing that would help was a fundo. The entire time (2.5 weeks in hospital) I fought this and asked them to test her for celiac since we were going through testing on our son at the same time. We were told they see this stuff in heart babies all the time and just needed to accept our daughter is sick and move on. She gained a little after 2 days of gut rest (no food= no gluten, so of course she was doing better), so they let us come home, but she got a lot worse we now know because of the gluten. I asked about gluten being in breast milk and was told it was impossible and the fundo was the only solution, so we did it. I cried while talking to the surgeon, telling him that I didn't think this was the issue, but I didn't know what to do. Within 6 weeks it came undone. I went gluten-free to try it and the vomiting got better, but the damage was already done. I kick myself every day for that.

Judy - Please tell your dr. how grateful I am. I do hope you have a better day tomorrow. How did the stocking work out? thanks again for caring in your own crisis.

I think the brevity of all this really hit me tonight. If we don't redo the fundo, she might get pneumonia after heart surgery. I don't think I have to tell all of you how bad that might be. If we do it, it might weaken her heart and hasten heart surgery before she's recovered from the fundo. Not a good situation either way.

Thanks again for all the prayers. Please keep them up!

[chrissy]

i didn't remember that megan had had a fundo. i'm sorry it turned out so bad for her. we have had such a positive outcome with sylvia's fundo---i would really like for my twins to both have one. kassie's reflux is really bad. tiann's reflux is not as bad, but it is part of the reason that tianna is able to throw up at will----i guess i'm thinking it would make it complicated for her to try purging.

why did the fundo coming undone cause damage---i guess i thought it would have just returned her body to pre-fundo condition?

[TCA]

i didn't remember that megan had had a fundo. i'm sorry it turned out so bad for her. we have had such a positive outcome with sylvia's fundo---i would really like for my twins to both have one. kassie's reflux is really bad. tiann's reflux is not as bad, but it is part of the reason that tianna is able to throw up at will----i guess i'm thinking it would make it complicated for her to try purging.

why did the fundo coming undone cause damage---i guess i thought it would have just returned her body to pre-fundo condition?

I'm glad you had a postive experience. I was told that by the tests they can see where the sliding hiatul hernia is much larger and the reflux is much worse post fundo. Good luck in making a decision on the twins. My husband's friend at work said her daughter is doing worse now too. They're putting her back into a program out west for a few more months in hopes to help her. I think of you often and all you have to manage. Do you want me to get the name of the program?

[Guest Robbin]

Tanya, You are a great mother and you decided to go with what the doctors recommended. The doctors have seen many, many patients with the same problems, so you trusted their judgement. That makes you a good responsible mom. This is something out of the ordinary with the fundo obviously and you are doing everything possible. Please, please, please my friend, do not think negative "what ifs" You will drive yourself nuts. (I am guily of this too) I am praying for Megan's complete healing and peace for you. I wish I could help you more. When I am in situations where I tried everything, felt panic and fear constantly, I repeat over and over "Faith, Hope, Love" like a mantra. It calms me down and gives me peace. (Sometimes I have to repeat it about a hundred times, but it helps!)

[nikki-uk]

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.

TCA,my heart goes out to you-you're in a catch 22 situation.

Is the G-J tube a gastrostomy (feeding stoma direct to the stomach)?

Obviously any surgery is not something you want to enter lightly for Megan because of the effects of an anaethestic on her heart-but on the same token,she needs to gain as much weight as possible for the upcoming heart surgery.It's a conundrum and a tough one.

Just a suggestion,but maybe a little extreme,but has anyone mention a TPN line?(Total Parenteral Nutrition-where a liquid IV deliverers nutrition directly in the vein-thus bypassing the stomach and bowel)

You mentioned Megan's sats are quite low-is she on oxygen at home?

I'm not sure I've been any help,but I wanted you to know that I'm thinking of you during this very worrying time.Sending Megan positive thoughts for her health.

Nikki.

[Fiddle-Faddle]

T, I will go today to the Sisters of Divine Providence and put Megan's name on their prayer board. Would you mind very much posting what you think the best wording might be? I have this feeling that it might be better if the nuns get a bit more specific than a general prayer for health and recovery. I was thinking of "cure for reflux and a successful heart surgery," but I would like to know how you would like it. Thanks!

[TCA]

Fiddle Faddle - Specific prayers are hard sometimes. You never know what you might be missing with this little one!!! I ask the Lord to please help us figure out a good solution to Megan's reflux/retching/gagging/aspiration problem. To help her to continue to grow and gain weight rapidly. To touch her little heart and make it as strong as it can be for the surgery. For her to recover quickly from whatever procedures may be in her path and for general healing. For her to continue to laugh and be so happy that the doctors are amazed every time they see her. For the doctors to have wisdom in their care. And for all of us that love her so much to make choices that will be the most beneficial to her.

Thank you so much for the prayers. She's such a little miracle. Yesterday the radiologist just couldn't get over how happy and social she is. Looking at the test he KNEW she had to be in terrible pain, yet she would smile and flirt and laugh and play continuously. Right after having a choking spell she would tear up a little, then go back to being happy immediately.

Nikki, Megan has been on TPN before and handled it well, but being a heart baby, IVs are VERY hard to come by and they really don't want to do a PICC line again because of risk of infection before surgery. It is on the list as backup nutrition, though. She is not on oxygen, but the plan is to go forward with surgery early if her sats get down into the 60s. She already has a G-tube, so placing a G-J is not a big deal from what I understand. I haven't talked to the GI yet, though. The help is you caring and praying!

Robbin - thanks for checking me on this. It's just hard to see her like this and I keep thinking as the Mother there should be somthing I can DO. I'm a doer and always have been. Maybe God is trying to let me know I'm not in nearly as much control as I like to think!!!

Hugs,

Tanya

[key]

Tanya,

We have been moving and on vacation and just checking in. I am sorry that Meg is having so many problems and her fundo caused more problems. It isn't your fault. We can't always know what is best for our children and you just allowed the doctors to do what they thought was best for her. Why would the fundo cause more damage? I don't know much about it, but just curious.

I am praying for Meg and you. I hope the Reglan is working for your milk supply. So happy she gained so much weight! That is awesome. My guy is small, so I am so happy when he puts on weight or grows a bit.

Hang in there. I am thinking of you often and praying for you.

Monica

[chrissy]

TCA---what is your name, anyway?LOL!! i'd love to hear what program that gal is in---especially since we are out west, also. i think that the program in seattle is a good program, but it is a long way for us to go. 2 1/2 hours to get to the airport, the flight is short, but then it is another 45 min drive into seattle. she really needed to be in-patient because her health was compromised. i'm hoping she won't have to go back again---but maybe residential treatment might be an option if she did, and there are residential places closer to us---but i don't know if our ins. will cover them.

give me a condensed version of exactly what is happening with megan. what is the surgery that is coming up? will she reach a point where her heart will be "well"? our ped surgeon told us that it is retching that makes a fundo come undone----and it sounds like megan has a lot of that----i am assuming that is what you mean when you say she is gagging? do they have any explaination for why she is gagging? aspiration is a definite reason to do a fundo-----i really hope you will have a better experience if you go ahead with the fundo again. don't beat yourself up about the first surgery------it really is the only way to repair a serious hiatal hernia in an infant. it may have been that her reflux was going to get worse anyway and you would have been berating yourself for not doing the fundo. you made the best decision you could and so did the docs. it wasn't necessarily wrong, it just didn't work.

how old was meg when she had her fundo? sylvia had her's just before she turned 10 months. she was r efluxing almost 25% of the time, she was anemic, failure to thrive, and her esophagus was ulcerated----and she was on prevacid and carafate. the ped surgeon told us that the hiatal hernia made her reflux uncontrollable. of course, sylvia didn't have the health problems that megan has, but i just wanted to let you know how much damage a hiatal hernia can cause an infant. (i'm probably not telling you anything you don't know)

how old is megan and how much does she weigh? sorry for all the questions!!!

[Fiddle-Faddle]

T, you and Megan are now offically on the "prayer hotline" with the Sisters of Divine Providence. (And I'm adding my own, too, every night.)

[TCA]

Thanks again for the prayers.

Sorry, but I don't have a lot of time right now. Today has been pretty crazy! We started of trying to schedule a G-J tube placement (from her G-tube to her intestines) in our hometown, but they don't have the right size tube for her, so we ended up getting scheduled by work in tomorrow at Vanderbilt. They're going to admit her overnight for observations just because she is such a delicate case. I may be out of the loop for a couple days, but I'll try to let you all know how it goes.

Chrissy - Meg is 14 mos. and 16 lbs. Had fundo at 4 mos. Thanks for the info on the fundo. It was the worst experience we've ever been through, and you know how much we've been through with her. She retches constantly and no one know why. Her reglad dose was upped today, so I'm hoping that will help. My fear with the G-J is that she will retch more because of an empty stomach. We'll see. Her heart will be more stable after this heart surgery, but she will need repeat procedures as she outgrows the shunt they're putting in. I'll get the name of that program. I may be Monday, but I'll get it for you.

BTW my name is Tanya

[Judyin Philly]

PRAYERS STILL CONTINUTING FROM US

HAVE APT WITH CHIRO TOMORROW AND WILL FORWARD WHAT INFO SHE FOUND.

GOOD LUCK WITH WHAT'S AHEAD OF YOU TANYA AND MEGAN

JUDY IN PHILLY

[Guest Robbin]

Tanya, we are all fervently praying for you and your family at my house too.

[schuyler]

I'll continue to pray for you, Megan, and the rest of your family. Tomorrow, I will add her to our prayer list and wall at church.

Megan is lucky to have such an awesome, devoted mom.

[TCA]

Today was another unbelievable exhausting day. We drove 2.5 hrs. to Vandy where we were told there was a mixup in scheduling and they couldn't do the GJ tube. AAAAAAAAARRRRRRRRRRRRRRRGGGGGGGGGGHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!! 2nd time in 2 weeks we had a wasted trip up there. Anyway, ended up coming back home to have it done at the local hospital. When they put the contrast in her belly to place it, the could see just how big the hernia is. The dr said this is hte kind of hernia he sees in 70 year old ladies, not babies. Over 50% of her stomach is outside her diaphram. It looks like the only thing left to do is another fundo and hernia repair. I dread it soooo badly. It was so horrible the 1st time, but I have hopes it would be better this time. I have to. Her GI gets back form vacation on Wed. and we hope to meet with him then about what and when things have to be done. Please continue to pray.

Maybe God intended for us to be there, though. While waiting at Vandy for 2 hrs., I met a mom whose little girl has had chronic C for 2 years. I told her about celiac disease and this site. She said a blood panel was done, but it was negative. She didn't know anything about celiac disease, though. It may not be celiac disease, but I felt compelled to tell her. You never know how God might can use a bad day!

[TCA]

I also meant to add that the reglan seems to be working!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

It's a good thing too, because I used the last container out of the freezer this morning!

[Fiddle-Faddle]

Oh, Tanya, what you've been through--

I'm glad the Reglan is working, and I'm glad you're home. REst, put the kids in front of a video for a change, and MOO!

Love,

Alison

[Matilda]

..

[Judyin Philly]

SO SORRY ABOUT YOUR DAY.

I'M PRAYING SO VERY HARD FOR YOU BOTH.

CHIRO HAD HER SON AT THE HOSPITAL ALL DAY YESTERDAY SO SAD ..

SO SHE DIDN'T HAVE THE INFO AND ASKED ME TO SEND HER APPOLOGIES..

I FILLED HER IN AS BEST I COULD RE MEGAN'S DAY AND SHE'S FAMILIAR WITH THE PROCEDURE SHE HAD DONE THAT YOU TALKED ABOUT LAST NITE.

WOW --HAPPY YOU COULD FIND THE POSITIVE TO SHARE celiac disease ON A 'BAD WASTED' DAY...WAY TO GO LOOKING FOR THE POSITIVE...IT'S GETS TIRESOME SOME TIMES DOENS'T IT BUT NO ALTERNATIVE I CAN SEE.

MUST GET OFF AND FOLLOW HER ADVICE AND START WITH THE 100 % FOOT UP POSITION FOR THE WEEKEND. I JUST DID A POST OF THE LAST APT.

HOPE YOU GET SOME REST. MEGAN IS AN AMAZING 'LITTLE ONE' ESP FROM WHAT THE DR'S SAY ABOUT HER BEING SO HAPPY ETC..APPLE DOENS'T FALL FAR FROM THE TREE NOW DOES IT.

LOVE

JUDY

[TCA]

Judy,

I finally found a liquid Zinc we can use for Megan tonight!! It was $48, but at least we found it. Thanks for your help in this. I had just about given up until you told me about your dr. Please give her my best wishes about her son. It must be hard to juggle asll she has to do. What a compassionate woman!

Matilda - You're very kind to offer such kind words. I must have missed the one about the orgasms - so many things i could say, but I'd better leave that one alone.......

Alison - Mooing away!!!!!!!!

[Fiddle-Faddle]

Tanya,

You and Megan are now on my physical therapist's dad's prayer chain (he's a minister).

Quick smile: When the Pittsburgh Symphony goes on tour, we usually get to the airport or bus terminal very early to be on the safe side--and then we nearly always have a gate change (because we went to the wrong gate on account of being so early), so all 100 of us (plus spouses, kids, guests, etc,) go trudging off together to the new gate. Invariably, our principal horn player, who has a wonderful sense of humor despite his exalted position (and he just might be one of the very best horn players EVER), waits until we're all in a "herd," usually at the security check, and then he and some of the other brass players start mooing, very realistically. Usually, most of us join in. We're such a refined bunch!

Oh, and his wife has celiac disease, too!

Have an udderly moo-velous night!

[TCA]

Tanya,

You and Megan are now on my physical therapist's dad's prayer chain (he's a minister).

Quick smile: When the Pittsburgh Symphony goes on tour, we usually get to the airport or bus terminal very early to be on the safe side--and then we nearly always have a gate change (because we went to the wrong gate on account of being so early), so all 100 of us (plus spouses, kids, guests, etc,) go trudging off together to the new gate. Invariably, our principal horn player, who has a wonderful sense of humor despite his exalted position (and he just might be one of the very best horn players EVER), waits until we're all in a "herd," usually at the security check, and then he and some of the other brass players start mooing, very realistically. Usually, most of us join in. We're such a refined bunch!

Oh, and his wife has celiac disease, too!

Have an udderly moo-velous night!

Thanks for more prayers. Megan had a crummy day. She cried all day, which is so unlike her. I guess its just getting adjusted to the new tube and not eating. It's really messing with me mentally to not try to feed her and get her to eat. It's been a focus for so long now. I don't know how to react.

Mooing - That's too funny!!!! I didn't realize you played with the Symphony! Wow! I'm really impressed. What do you play? Being from AL, I grew up with bluegrass being played by my familiy. I learned to play the fiddle a little, but have since forgotten all I knew. My brother, on the other hand, plays the banjo. He's in 2 bands and teaches lessons now. Different worlds, I'm sure. We do have plenty of cows around, though. I love music of just about all kinds. Are you on any c.d's?

[Judyin Philly]

TANYA--SO GLAD YOU POSTED BUT SORRY MEGAN HAD A BAD DAY..CAUSE THAT SURE MEANS "MOMA' HAD A BAD DAY TOO.

PRAYERS STILL COMING YOUR WAY

JUDY IN PHILLY

DO YOU THINK THE ZINC HELPED OR TOO SOON TO KNOW.

[schuyler]

I hope that tomorrow is a better day for Megan (and you). I'm saying lots of prayers for you all.

[Fiddle-Faddle]

I'm sorry you had such a tough day. I was worried when I saw you hadn't posted last night. Could she be cutting molars? Or coming down with something? I know it's not much comfort, but even healthy babies have days where they cry all day. Whatever it is, you will know much better than anyone, as you read her so well.

She cried all day, which is so unlike her. I guess its just getting adjusted to the new tube and not eating. It's really messing with me mentally to not try to feed her and get her to eat.

(Does she need to suck on something?)

What do you play? Being from AL, I grew up with bluegrass being played by my familiy. I learned to play the fiddle a little,

I play violin--always loved fiddle music, but never really played it much, there's not a lot around Pitsburgh! PM me your address and I'll send you a couple of DVD's. One is the concert the PSO played for the Pope a couple of years ago, along with a chorus from 6 different countries. The head Rabbi of Rome and the head Muslim cleric were also in attendance, sitting with the Pope. It was called "A Concert of Reconciliation," and we played Mahler's 2nd Symphony ("The Ressurection")--very uplifting.