Jump to content

  • 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):

    Celiac.com Sponsor (A1-M):

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

Megan's Gagging Isn't Any Better

TCA

Recommended Posts

jerseyangel Proficient
jerseyangel
Posted

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):

Celiac.com Sponsor (A8-M):


  • Replies 882
  • Created
  • Last Reply
AndreaB Contributor
AndreaB
Posted

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
lonewolf
Posted

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
TCA
Posted
  • Author

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
AndreaB
Posted

Thanks Tanya for taking the time to keep us updated.

Hugs for you and your family.

key Contributor
key
Posted

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
KayJay
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


DingoGirl Enthusiast
DingoGirl
Posted

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

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

Judyin Philly Enthusiast
Judyin Philly
Posted

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
nikki-uk
Posted

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
VydorScope
Posted

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
AndreaB
Posted

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

schuyler Apprentice
schuyler
Posted
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
TCA
Posted
  • Author
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
Guest Robbin
Posted

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
TCA
Posted
  • Author
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
Judyin Philly
Posted

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
mouse
Posted

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
TCA
Posted
  • Author

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
VydorScope
Posted

OMG THAT AWSOME ABOUT THE WIEGHT!!!!

AndreaB Contributor
AndreaB
Posted

Another great report. Will wonders never cease!

dlp252 Apprentice
dlp252
Posted

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

jerseyangel Proficient
jerseyangel
Posted

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

schuyler Apprentice
schuyler
Posted

Yay Megan!!!!!!

Judyin Philly Enthusiast
Judyin Philly
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but...
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10). Since then it has gone up to 10. I am not happy with that. I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I...
    3. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer. Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks...
    4. Scott Adams
      - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Celiac disease is the most likely cause, but here are articles about the other possible causes:
    5. Scott Adams
      0

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,213
    • Most Online (within 30 mins)
      7,748
    beckyEck
    Newest Member
    beckyEck
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Low iron and vitamin d

      By lizzie42 · Posted

      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.