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

TCA Contributor
TCA
Posted
  • Author

Hey guys. Thanks for checking on Megan. I just posted to caring bridge. I hope all of you are doing well.

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

Sorry I didn't update more yesterday, but the keyboard was broken and that was about the best I could do. I was just too tired last night to get online. We FINALLY were discharged about 2:30 yesterday. Megan did really well yesterday and slept through the night last night. You would never guess she had been in the hospital if you saw her today. We even plan to go to church tonight.

As for the "medical talk" Cotrena mentioned: The pressures they measure during the heart cath are in the right ventrical. In normal people these pressures should be 25-30% of an individual's blood pressure. Before putting in the stint, Megan's was at 80%. After the procedure it was 60%. This is much better, but still not where she needs to be. The doctor said he was glad to get it down some, but it needs to come down to at least 50%, but hopefully lower. He plans to go back in 4-6 mos. and try to open it more, either with balloons or stints.

I have to admit that I was a bit disappointed that they couldn't get it open as much as they had hoped, but am thankful that it is improved. We so appreciate the prayers of all of you and hope that next time the pressures can be reduced to close to the normal range of 25-30%.

Another thing that was found during the cath is that her right femoral vein was closed. (The artery is what collaped before.) They were able to push through it and open it up. He hopes it will stay open now, but will check it again when he goes back in a few months.

She goes back to Vandy for checkups on 3/6 and we'll plan the next procedure then. He wants to give her plenty of time to fully heal before doing anything else. She also has a GI checkup the same day. She goes to the cardiologist here in 2 weeks.

We want to do the cath well after her 2nd birthday. We plan to throw her a big birthday bash and invite everyone. Instead of gifts, though, we ask that everyone bring the money they would spend on a gift as a donation to Ronald McDonald House in Nashville in her honor. They have helped us so much during these hospitalizations and this is a way we can give a little back. We'll get the details together and let you know as the time gets near.

Thanks again for your prayers and concerns. We are blessed beyond measure. There was one Mom in the waiting room that was there by herself and had to leave right after the surgery to care for her other 3 kids at home. I can't imagine. We sat there with all of Megan's grandparents, Aunt Kack, and our pastor and his wife. All of the other aunts and uncles, cousins, and friends were calling constantly for updates. I can't imagine having to go this alone. We know that all of you are here for us and that brings tears of joy to my eyes as I type this. Thank you for your loving care. Pray for those who aren't as fortunate.

Love to all,

Tanya

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

Celiac.com Sponsor (A8-M):


  • Replies 882
  • Created
  • Last Reply
nikki-uk Enthusiast
nikki-uk
Posted

Tanya, I am pleased Megan got through it ok!

Hopefully in time they will get the pressure down more.

Take care all :)

jerseyangel Proficient
jerseyangel
Posted

Thanks for taking the time to post to us, Tanya. Praying that everything continues to progress properly. She's done so well!

AndreaB Contributor
AndreaB
Posted

Thanks Tanya. Glad she's doing well and hope the percentage continues to drop.

I'm thankful you have a lot of support. I can't imagine going through something like that alone either.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Tanya, I'm so happy to read about all the improvements! And Hooray for Ronald McDonald House! Let us know when Megan's 2nd birthday approaches?

Also, if you are in touch at all with the mom of 4 who was alone in the waiting room, please tell her that your friends on glutenfreeforum are praying for her and her child, as well...I hope her child came through the surgery all right.

mouse Enthusiast
mouse
Posted

Thanks Tanya for taking the time to keep us updated on how Megan did in surgery. She is a fighter. So glad that she is recovering so well. You always have my prayers and well wishes.

super-sally888 Contributor
super-sally888
Posted

Hi,

Best wishes and prayers to you and Megan.

Another drug that increases milk supply is domperidone (motilium). This drug actually stimulates prolactin which has the impact on milk supply. I think it may be prescribed directly to increase milk supply. It is also used to help increase gastric motility (I think it is an earlier drug than reglan, and should have less potential side effects) - I used it for gastric motility before and got lactation at the same time. You could ask your doctor...

Sally

HUH?? Reglan is a drug given to ppl with acid reflux to help with that, I have never heard of it being used to increase milk supply?!?
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


NoGluGirl Contributor
NoGluGirl
Posted
Hey guys. Thanks for checking on Megan. I just posted to caring bridge. I hope all of you are doing well.

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

Sorry I didn't update more yesterday, but the keyboard was broken and that was about the best I could do. I was just too tired last night to get online. We FINALLY were discharged about 2:30 yesterday. Megan did really well yesterday and slept through the night last night. You would never guess she had been in the hospital if you saw her today. We even plan to go to church tonight.

As for the "medical talk" Cotrena mentioned: The pressures they measure during the heart cath are in the right ventrical. In normal people these pressures should be 25-30% of an individual's blood pressure. Before putting in the stint, Megan's was at 80%. After the procedure it was 60%. This is much better, but still not where she needs to be. The doctor said he was glad to get it down some, but it needs to come down to at least 50%, but hopefully lower. He plans to go back in 4-6 mos. and try to open it more, either with balloons or stints.

I have to admit that I was a bit disappointed that they couldn't get it open as much as they had hoped, but am thankful that it is improved. We so appreciate the prayers of all of you and hope that next time the pressures can be reduced to close to the normal range of 25-30%.

Another thing that was found during the cath is that her right femoral vein was closed. (The artery is what collaped before.) They were able to push through it and open it up. He hopes it will stay open now, but will check it again when he goes back in a few months.

She goes back to Vandy for checkups on 3/6 and we'll plan the next procedure then. He wants to give her plenty of time to fully heal before doing anything else. She also has a GI checkup the same day. She goes to the cardiologist here in 2 weeks.

We want to do the cath well after her 2nd birthday. We plan to throw her a big birthday bash and invite everyone. Instead of gifts, though, we ask that everyone bring the money they would spend on a gift as a donation to Ronald McDonald House in Nashville in her honor. They have helped us so much during these hospitalizations and this is a way we can give a little back. We'll get the details together and let you know as the time gets near.

Thanks again for your prayers and concerns. We are blessed beyond measure. There was one Mom in the waiting room that was there by herself and had to leave right after the surgery to care for her other 3 kids at home. I can't imagine. We sat there with all of Megan's grandparents, Aunt Kack, and our pastor and his wife. All of the other aunts and uncles, cousins, and friends were calling constantly for updates. I can't imagine having to go this alone. We know that all of you are here for us and that brings tears of joy to my eyes as I type this. Thank you for your loving care. Pray for those who aren't as fortunate.

Love to all,

Tanya

Dear Tanya,

It is so good to hear that Meg has improved! Those heart caths can be pretty difficult. My grandfather had one some time ago. He has congestive heart failure, and his heart only pumps between 15% and 19%. He often struggles just to breathe when walking. Hopefully, Meg will be able to go back and they can help reduce the pressure some more. Your little girl is like a soldier! She fights! We are so proud of her!

Sincerely,

NoGluGirl

  • 2 months later...
TCA Contributor
TCA
Posted
  • Author

Just updated caring bridge - hope all of you are doing well!

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

Sorry I haven't updated in a while, but our lives have been as crazy as usual. Megan is doing WONDERFUL. She's down to about 4 hours a night on her feeding tube and is eating so well. We're gradually decreasing her feeds and if all goes well should be eating entirely by mouth within a couple months!!!!

Since I have written last, we have a new arrival in the family - Travis Garner Andrews. Jarod's brother, Luke and his wife, Cotrena delivered him last thursday. He is 14 weeks premature and weighed in at 1 lb. 10 oz. You can follow his progress at caringbridge.org too. His site name is travisandrews. Please be in prayer for him and the family.

Meg had a checkup with the GI and cardiologist at Vandy last week. We intended to update then, but were busy with Travis. They were both amazed at how well she is doing. She was supposed to have a heart cath in the next month or two, but is doing so well, they decided to put it off until Sept.!!!

She is down to one therapy visit a month with each of her 3 therapists! She is ALMOST walking and may be by her birthday. You would never know she has ever had a problem to see her now. God is SO GOOD!!!!!

We plan to celebrate all of this good news and thank you for your prayers and support by doing a big 2nd birthday party.

You're ALL invited to Megan's 2nd Birthday!

April 21, 2007

2-4 pm

Lacey's Spring United Methodist Church

No gifts, but donations will gladly be accepted for Ronald McDonald House of Nashville.

We will have lots of games for the kids and fun for adults too. Please join us in this true celebration of what God can do!

Love to each of you!

Jarod, Tanya, Cole, and Megan

jerseyangel Proficient
jerseyangel
Posted

Tanya,

What absolutely wonderful news about Megan! God is good, indeed :)

I'm so excited about the feeding tube and the walking. Wow!

I will keep little Travis and his mom and dad in my prayers. Sounds like you have all had a lot on your plate.

I promise you, if I lived closer, I'd be at that birthday party! Sounds like fun :D

mouse Enthusiast
mouse
Posted

What absolutely great news about Megan. I also wish I lived closer as I would certainly attend such a momentous day.

My granddaughter who lives with us, was born 16 weeks early and weighed 1#, 10oz. She is now 19 and perfectly healthy. I tell you this so that you know how far medicine has come with high risk preemies. My prayers are with the new little one and also still with your family.

lonewolf Collaborator
lonewolf
Posted

Tanya, thanks for updating us. It's so good to hear that Megan is doing so well!

Judyin Philly Enthusiast
Judyin Philly
Posted

SO HAPPY FOR YOUR WONDERFUL MEGAN NEWS...

NOW DO YOU HAVE FOOD FOR ALL 13,0000 OF US?????

WILL PRAY FOR LITTLE TRAVIS TOO.

THIS IS JUST A TRUE MIRCALE.

LOVE JUDY

PS HOW ARE YOU DOING WITH YOUR MEDICAL ISSUES, KIDO.?

nikki-uk Enthusiast
nikki-uk
Posted

I'm so pleased Megan is going from strength to strength!, I knew she'd turn the corner! :)

I will keep little Travis in my thoughts.

BTW - would love to come to the party!! - but ...it's a tad too far to travel (I'm in the UK!) :lol:

AndreaB Contributor
AndreaB
Posted

Tanya,

Thanks for the update. It's so good to hear how Megan has progressed. She's definately a trooper. Will keep little Travis and family in my prayers.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Prayers sent for little Travis and his family!

I'm so thrilled to hear how well Megan is doing. There is NOTHING that child (and you) cannot accomplish!!

Thanks so much for the update--I'll be at the party in spirit only!

  • 4 weeks later...
TCA Contributor
TCA
Posted
  • Author

Hey everyone!!!!! If I thought all of you could make it, I'd find a way to feed all of you! Sorry I don't post much anymore, but Megan has reached the phase where she screams every time I get on the computer. Hopefully she will get out of it soon and I will be able to be on more again. I miss all of you!!!!! Just posted to caring bridge and copied it in below. BTW, Travis is doing great. Thanks for the prayers for him too!

Hugs - Tanya

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

Megan took her first steps Tuesday!!!!!! She is doing soooooo good. She also saw one of her feeding therapists on Tuesday and was pretty much released except for a follow up visit in Aug. Melissa, her therapist, said she had never seen a child progress as fast as she has. Today she saw her physical therapist, Rhonda. She's coming back in a month and then will go to once every few months once she's walking good. They're all so pleased with her progress.

She's down to 2 hrs. a night on the feeding tube and we hope to turn it off next Tues. We'll weigh her then and as long as she hasn't lost weight, we can turn it off!! The button will stay in her tummy for a while, though, to make sure all goes well.

We hope all of you can make it to her birthday party next Sat. We're all excited about it and hope to show her off a little. It's such a blessing to see the results of your prayers!

dlp252 Apprentice
dlp252
Posted

Thank you for the update, that is just FANTASTIC news!!!!

jerseyangel Proficient
jerseyangel
Posted

Tanya,

I just came from my email from Caringbridge with your update! :D

She's walking!!!!! Such great news all around. Glad Travis is doing well.

Have fun at the party--wish I lived closer. :)

nikki-uk Enthusiast
nikki-uk
Posted

Uh-Oh....now Megan's starting to walk she'll be getting into all sorts of mishchief!!!!! :D

Hope you have a great party!! :)

AndreaB Contributor
AndreaB
Posted

Tanya,

Another very positive update. So glad she's more than likely going to be off the feeding tube next week!

Have a great birtthday party. :)

mouse Enthusiast
mouse
Posted

What a celebration this birthday party will be. Megan walking has to be a wonderful sight for the whole family. And she eats - how awesome is that. Thank you for letting us all know as I just don't take the time to go to caring bridge. Hugs to you, Megan and your family.

  • 2 weeks later...
TCA Contributor
TCA
Posted
  • Author

I posted this to Caring Bridge yesterday. I wanted to update all of you. I hope all is well.

Hugs,

Tanya

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

Thanks to all of you, Megan's party was a huge success!!! She raised over $2,000.00 for Ronald McDonald House!!!!! We're waiting on a few donations that we've been told are in the mail, then we will deliver it.

It was such a blessed day. The weather was perfect and so many turned out to help us celebrate. Megan was on cloud nine as everyone took turns taking her down the 20 ft. slide. She has NO fear!

You can go to this link to see pictures from the big day. It was so much fun!!!

Open Original Shared Link

Hopefully that will work.

We also appreciate all of you who couldn't come, but sent such sweet cards and donations. It was quite a day and we hate you missed it. We really do appreciate your support of RMH, though.

Megan didn't come off the tube last week because she had a bit of a cold and didn't want to eat much, but we're taking our time and not pushing her too hard.

She was released by her Early Intervention Speech Therapist today.

Her next heart cath is scheduled for Sept. 5. Things can always change, as we've learned, but that's the date for now. Thanks so much for you continued prayers. We see the results every day!

Love,

Jarod, Tanya, Cole, and Megan

momof2sn Apprentice
momof2sn
Posted
TCA.. I know you are a very strong person to have gone thru all that you have already!! Am sending up my prayers for all of your family to get thru this stressful situation. God gives mothers of sick children an extra bit of energy & whatever else they need when our children are sick. We had 3 of them, that was a long time ago..am a gr. grandmother but I remember a lot of it. Take care of yourself, and I hope the answer to Megan's problems come soon!! evie
AndreaB Contributor
AndreaB
Posted

Thanks Tanya!

I read over at Caring Bridge since I got an email update.

Sounds like the birthday bash was a great success.

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. Borky
      - Borky posted a topic in Dermatitis Herpetiformis
      0

      Gluten food test strips

      I just recently saw something on this. Has anyone tried test strips? Which brand is better? Not sure how they really work and if they really do work. Thank you, Nancy (aka Borky)
    2. Wheatwacked
      - Wheatwacked replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      17

      Gluten Issues and Vitamin D

      And more:
    3. Wheatwacked
      - Wheatwacked replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive. The endoscopy and biopsy is looking for damage to your small intestine. I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy...
    4. Scott Adams
      0

      Gluten-Free Diet Burnout: Why It Happens and How to Get Your Motivation Back (+Video)

    5. Midwesteaglesfan
      - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

      At 41 years old I have been fighting fatigue and joint pain for a couple months. My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right. Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist. He was extremely thorough and sat with me and m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,269
    • Most Online (within 30 mins)
      7,748
    Cookie Monster13
    Newest Member
    Cookie Monster13
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Borky
      Gluten food test strips

      By Borky · Posted

      I just recently saw something on this.  Has anyone tried test strips?  Which brand is better?  Not sure how they really work and if they really do work.  Thank you, Nancy (aka Borky)
    • Wheatwacked
      Gluten Issues and Vitamin D

      By Wheatwacked · Posted

      And more:
    • Wheatwacked
      Going for upper endoscopy today

      By Wheatwacked · Posted

      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      Going for upper endoscopy today

      By Midwesteaglesfan · Posted

      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      Bee balm lipbalm not gluten free

      By marlene333 · Posted

      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
×
×
  • 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.