Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Megan's Gagging Isn't Any Better


TCA

Recommended Posts

jerseyangel Proficient

Tanya--I can just picture Megan outside in the fresh air, so happy to be home :)

I say a prayer for her every day--and think about you all often.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Lakefront Brewery
Little Northern Bakehouse



Celiac.com Sponsor (A8-M):
Authentic Foods


  • Replies 882
  • Created
  • Last Reply
AndreaB Contributor

That's great news about her eczema and her fun time outside. So glad she has been healing well and her gagging is a little better.

lonewolf Collaborator

Yay for Megan! I'm so happy that she's home and doing well. My kids ask about her. She must have a lot of spunk to pull off the steri-strips!

TCA Contributor

I just posted to caring bridge. This is it. I'll give Vincent a break and try to post here too. :)

************************************************

Just wanted to let all of you know that Megan had a great weekend. Our church sign said "Megan is home - God is Good". I think that says it all!

She only needed tylenol once all weekend and we think that was from teething. She has so much energy and can't stand to sleep since she wants to know everything that is going on.

The gagging is back to where it was before surgery. I still pray constantly that it will improve. We'll start the all formula trial Tues. We're down to 20/80 concentration now. We're letting her play with foods so that she stays aquainted with textures and such. Feeding is still going to be a long, hard road, but I'm relieved that we're to the point we can start to be concerned about that.

One of my friends made the comment that she didn't realize how stressed I had been until she saw me post surgery and saw how relieved I now am. I am just praising God constantly for his healing grace in Megan. She's proof that miracles still happen.

The hardest part now is keeping her in since she doesn't look sick anymore. I want to get her out and show her off. It won't be long, though!

Hope you all have a great week. I'll continue to post on her progress every few days. Thanks for more prayers!

Love to all - Jarod, Tanya, Cole, and Megan Hope

AndreaB Contributor

Thanks Tanya for taking the time to keep us updated.

Hugs for you and your family.

key Contributor

So glad that Megan is doing so much better! That is awesome she wants to play all day.

May God continue to bless your little family and heal Megan.

Love,

Monica

KayJay Enthusiast

That is great news! I hope she can eat soon.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Lakefront Brewery
Food for Life



Celiac.com Sponsor (A8-M):
Lakefront Brewery


DingoGirl Enthusiast

Such continued good news! So happy she's gaining strength.

btw - KayJay - - that is SUCH a beautiful baby! :)

Judyin Philly Enthusiast

Thanks so much for your PM and kind words during your 'busy life'

They mean alot!

Sorry Megs gagging is back to where it was ...but ...the surgery is over and this will be taken care of ..i just feel it...our prayers from the forum are still continuing as you know...

Post when you can as we will be watching and praying inbetween posts.

We won't forget you, dear.

love

judy :)

nikki-uk Enthusiast

So glad Megans recovery is going well! :)

I remember with my son it was quite an adjustment to him being able to stay awake all day after his second heart op!

Let's hope as she gets stronger she will be able to tolerate whatever meds the G.I docs want to do next?

VydorScope Proficient

With all taht is going one, TCA took time out to send us a thank you card! I swear that woman must never sleep!

AndreaB Contributor

She must be one of those rare souls that doesn't need much to function.

schuyler Apprentice
She must be one of those rare souls that doesn't need much to function.

Seriously. I don't know how she does it all. :unsure:

TCA Contributor
Seriously. I don't know how she does it all. :unsure:

If you saw my house you would know that I don't do it all. :P In fact, I hardly get any of it done!

I actually wrote the note around 4 am while sitting up with Megan in PCCU trying to stay awake. I haven't written the first one since getting home. Vincent and Kristy were just lucky. :lol:

With all taht is going one, TCA took time out to send us a thank you card! I swear that woman must never sleep!

You're right, I never sleep, but not because of writing thank you notes!!!!! :lol:

I spoke with a friend of mine from church today who set up a prayer vigil during the time of Megan's surgery. She said it was so awesome to see our church body come together in prayer for her. She said they went from a fearful church during surgery, to a joyful church after surgery when she was doing so well, to an angry church when the nurse mistakenly picked her up the wrong way, then to a thankful church when we came home so early. It's so amazing at the sheer numbers praying for her. No wonder her healing is so miraculous!

Guest Robbin

Tanya, thank you so much for your updates. The moods and emotions of your church echoed here. I was livid when I read of that nurse picking her up like that. Megan is a little wonder. I am so happy she is doing so well. Do you have any news of Baby Will? Take care and REST !!!!

TCA Contributor
Tanya, thank you so much for your updates. The moods and emotions of your church echoed here. I was livid when I read of that nurse picking her up like that. Megan is a little wonder. I am so happy she is doing so well. Do you have any news of Baby Will? Take care and REST !!!!

I haven't heard anything from Will's family. I think of them often. I met so many at RM house that are that way. You keep each other in your prayers, not really knowing how they're doing. I pray he turned things around.

Judyin Philly Enthusiast

So good to see a post and that things are still progressing well.

It seems i wasn't the only one that was 'speechless and livid' at the clueless nurse. Guess we all just didn't want to comment and just sent positive vibes and prayers.

Get some sleep, Tanya..the cobwebs and dirt will be there in the weeks to come..my house 'cleaning faries' have dissappeared..Maybe they are on the way to your house :lol:

Hugs and good nite all

judy

mouse Enthusiast

Wonderful news about Megan's continuing recovery. Just wish the gagging would go away. Hope you got some much needed rest last night. Prayers and many hugs still coming your way.

TCA Contributor

I just posted this to caring bridge....

********************************************************

Megan had checkups with her pediatrician and the cardiologist in Huntsville today. Both were so pleased at her progress. Both stressed that we need to keep her in for 6 weeks after surgery and still be careful even after that. She weighed 18-14!!!!! Now the pediatrician is concerned that she's gaining too fast! Ha! Never thought I would see the day. He's going to call her GI about doing less time on the pump.

I tried to give her a bottle with the Neocate only yesterday. She eagerly took it, but gave me an awful face after she tasted it. We'll continue with the formula only for a couple days, then start to introduce foods. Hopefully she'll be able to tolerate them and we can start getting her off the tube feedings.

She's still on a heart med and lasix and the cardiologist wants to continue those for a few more weeks. He did an echo and he saw the slight narrowing of the arteries where they connect to the shunt, but was not concerned. He thinks this surgery will get her by until she's "half grown"!!!! Odd things can always happen, but that's very encouraging. He also said to put off any other procedures for the GI issues until 3 mos after heart surgery. Hopefully she won't need it at all, though.

She'll go back to Vandy 8/23 to see her surgeon and GI there. She'll see the cardiologist there 9/5 and the one here 9/20.

She charmed everyone she saw today and is just full of life. She's a bit spoiled after all of this, but hopefully she will outgrow that too!

Just got a call from the pediatrician. He called the GI and they agree that she is gaining too fast and we can now disconnect her from the tube 3.5 hrs a day!!!!! A little freedom goes a long way around here!

We hope all of you have a great week and thanks for the continued prayers!

VydorScope Proficient

OMG THAT AWSOME ABOUT THE WIEGHT!!!!

AndreaB Contributor

Another great report. Will wonders never cease!

dlp252 Apprentice

I just read that on CaringBridge...WONDERFUL!!!!!

jerseyangel Proficient

Great news, Tanya! So glad to hear it :) Give our little "chubette" a kiss for me :D

schuyler Apprentice

Yay Megan!!!!!!

Judyin Philly Enthusiast

The best news we could have ever hoped and prayed for....

I'm so happy for you all esp Megs.

love

Judy

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):
    Little Northern Bakehouse
    NutHouse! Granola Co.




    Celiac.com Sponsors (A17-M):

    Holidaily Brewing Co.



  • Recent Activity

    1. - DebD5 replied to Bebygirl01's topic in Related Issues & Disorders
      26

      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

    2. - DebD5 replied to ohmichael's topic in Super Sensitive People
      12

      Curious if I should quit my job

    3. - DebD5 replied to annirosex's topic in Related Issues & Disorders
      2

      Dealing with celiac and menstrual cycle

    4. - DebD5 replied to Katiexox's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Advice please

    5. - DebD5 replied to StevieP.'s topic in Related Issues & Disorders
      5

      Fodzyme


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      129,637
    • Most Online (within 30 mins)
      7,748

    Alice 6
    Newest Member
    Alice 6
    Joined

  • Celiac.com Sponsor (A20):
    Tierra Farm


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Tierra Farm



  • Upcoming Events

  • Posts

    • DebD5
      I would like to say you saved me. I’ve been so sick the last few years, celiac since 1997. And reading your post about the other glutens/grains that can be sensitive to celiacs, is the only thing that has ever helped me. Since going off a carbohydrates/grains, even gluten-free ones, My chronic pain is  85% better. I’m actually losing weight which, that’s a long story but was impossible. I definitely am like you. Thank you so very much for posting. For some of celiacs I do believe this is the magic key. 
    • DebD5
      I 100% believe if you were sticking gluten items, especially flour, and breathed it in you could be glutened. I’m a celiac for almost 30 years. For the first ten years as a celiac I’d help my polish family make pierogis at Christmas time. I would only cook them at the stove and I didn’t touch anything with my hands using spoons. But the flour is in the air. And I’d get violently ill for 1-2 weeks after the last few years I did it. Wearing a back is a great suggestion and washing your clothes and showering when you get home. Good luck. And I’m so sorry your parents are emotionally supporting you. 
    • DebD5
      Have you had your thyroid checked? I was diagnosed at 24 with celiac. Lost my period permanently at 32. Found out six months after I lost my period that I had 1 ovary with 1 follicle. I had a child already but wanted more. Ended up having two more children with one ovary and one follicle. But my doctors theories are if I would have gotten my thyroid checked sooner and fixed through medication, maybe things would look different. Who knows. I only share my experience so you question your doctors and advocate. Always see an endocrinologist for thyroid care fyi. Actually always see the specific Dr for your specific ailments. I’d also consider seeing a gynecologist that specializes in female hormones/menopausal symptoms. Early ovarian failure happens in celiacs so I read  on the celiac disease center in Chicago website. 
    • DebD5
      This. Scott said it beautifully. Document and start a trial gluten-free diet. I can also recommend an inflammation dietitian I saw last summer if interested. She’s the only one who helped me on a path to healing through an elimination diet. Which is tricky with your little one. But I completely trust her, she’s very expensive though. I figured out I’m sensitive to so many things and follow a gluten-free diet religiously. Just had an upper and lower endoscopy/colonoscopy and zero signs of celiac disease so they said. I’m a celiac since 1997. But my 33 yr old daughter is very gluten intolerant since 20 yrs old. 
    • DebD5
      I so appreciate you talking about this. Honestly I’m so sick the most part of the last 15 years, I’m going to cross reference your list with my own. Celiac since 24 yrs old diagnosed in 1997. I just saw a specific celiac GI specialist at the celiac disease center in Chicago and when I told her all the food reactions I was having she said she believed me but there was no clinical evidence to support my reactions(I felt so unseen, she recommended I see a gut psychologist, what the heck). I react with severe body aches to bloating and dizziness to exhaustion:  most lectins except berries and low lectin veg, no eggs, no nightshade veg, no dairy, all carbohydrates including no gluten-free carbs or grains, though a little coconut flour seems ok now, need to test other non grains, certain alcohols that say gluten-free but looking into their process further I get horribly sick if distilled through a gluten grain example Costco vodka….. Because I had an upper and lower GI in 1997(I was 24 and 84#s) and my GI doc came back with celiac disease, this new doc suggested I may not be a celiac. Is running some blood test. Omg. I can’t even. I’m so beyond frustrated. 
×
×
  • Create New...