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

mommida Enthusiast

I really have tears of joy for all of you. I will continue praying for you guys.

L.

PS Thank you Vincent for keeping us updated.


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



Celiac.com Sponsor (A8-M):



  • Replies 882
  • Created
  • Last Reply
Canadian Karen Community Regular

The Lord was right there in the operating room, I am sure of it!

I am sooooooo relieved......

God bless her! She sounds like a real trooper!

Hugs.

Karen

mouse Enthusiast

I don't know about anyone else, but I cry when I read all the wonderful updates. Yes, the prayers should not stop as there is a ways to go for Megan. But, the news is more fantastic with each update. Pink nailbeds is so awesome.

Judyin Philly Enthusiast

all pink and pretty and healthy looking and now into R McDonald house..

Prayers are indeed getting answered

judy

AndreaB Contributor

We are so happy that she is doing so well....we'll continue to keep her and you in our prayers.

jenyanderson Newbie

Hooray! Pink nailbeds! That's so wonderful!

jerseyangel Proficient

So thankful that the news continues to be good! Keeping the prayers and good thoughts flowing. :)


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



Celiac.com Sponsor (A8-M):



VydorScope Proficient

MEGAN UPDATE!

WEDNESDAY, JULY 26, 2006 08:21 AM, CDT

Megan had a great night! The cardiologist just came by and his words were, "Perfect!". I asked him if he though the timing was right for her surgery and he replied with another, "Perfect!". Perfect timing is what is what I have prayed for specifically since I first found out about this second surgery. Isn't God good?

She was running a fever after surgery, but that stayed down overnight. They layed her on a cooling blanket that brought it down nicely and have controlled it with Tylenol.

She's in a great deal of pain, of course, but she's been able to go longer and longer without pain medication. They're hoping to pull her off the ventilator this morning. She is waking between doses and seems to recognize us, but is very upset, so she gets more pain medicine and goes back to sleep. She'll probably be a lot happier once they get the breathing tube out of her throat.

We are rejoicing in her progress. Thanks to each of you for your many prayers. Know that it's helping each of us!!!!

jenvan Collaborator

God is good. So glad to hear how she is!

TCA Contributor

I just had to check in and see how all my prayer warriors are doing!!!! THANK YOU!!!!!!!!!!!!!!!!!

Thanks Vincent for keeping everyone in the loop. I'm crying at the love I feel from all of you. I've read your entries on her guestbook and words can't express how wonderful each of you are. I'll keep updating as things progress. Love and Hugs! Gotta get back to my baby!!! Jarod's there too, but I just can't stand to leave for long!

AndreaB Contributor

Yeah for a good nights rest and great comments from the doctor.

dlp252 Apprentice

God is so very good!

nikki-uk Enthusiast

Tanya,children are amazingly resilient (much more so than adults) and I'm sure Megan will come along in leaps and bounds now. :):)

GFBetsy Rookie

I've also been keeping your Megan in my prayers, and I'm so glad she's doing so well post-op. Give her loves!

penguin Community Regular

New update!!!

WEDNESDAY, JULY 26, 2006 04:22 PM, CDT

Megan came off the ventilator and had the tube removed a couple hours ago. She has done well breathing on her own. She's awake a lot more now, but is happier without the tube in her throat. She's down to Tylenol with codene for pain control. She's still hurting some, but that is to be expected. She knows me and Jarod and fusses when the nurse comes near her. I guess she learns fast.

She is having other issues, that are still under control, but being carefully monitored. Both her heart rate and blood pressure are elevated, but it could be because of pain. The swelling started bad today, but that is also expected. She is very puffy, but is being given Lasix to get rid of the extra fluid. She is having a lot of congestion, especially in her left lung, so they're suctioning it out (not fun) and doing respiratory therapy to prevent pneumonia. Her temperature started rising more this morning, but it's coming back down now.

The chest tubes are running pretty clear now (no blood) and the fluid is slowing which is another good sign. The PCCU doctor said she is doing really good for 1 day post op. We're so relieved that it went well.

Cole got to see her a few minutes ago. He wanted to kiss her foot, then told the nurse about Megan's boo-boo. He said, "Megnie's sick, but she'll be all better soon." He handled seeing the tubes and IVs really well. He's such a good big brother. He's in heaven right now because both sets of grandparents are at his beck and call.

We're so grateful to all of you for your outpouring of love. My Dad met another mother here who has been here alone with her child for 52 days. I can't imagine. Yesterday we had 4 grandparents, my brother and his wife, and our pastor and his wife here, not to mention all of you who were here in spirit. My cup runneth over.....

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

nikki-uk Enthusiast

Wow! She's breathing on her own already,thats fantastic.

Don't worry too much about how swollen she is.

I remember my son went in looking like a 3month old baby,and come out looking the size of a 5 yr old (well to me anyway!).The diuretics should take care of that.

Great progress! :)

Fiddle-Faddle Community Regular

Tanya, if you want to ask the other mom (the one who has been there for 52 days) for her first name and her child's, we could add her to our prayers...does she know about caringbridge.org?

I'm SO glad things are going so well with Megan! I remember when Michael came out of post-op into the PICU--I barely noticed the tubes and machines--my CHILD was there and BREATHING! But my husband was devastated at the sight of the tubes and machines, and stumbled out of the PICU in tears--and there was his brother, who had just flown 26 hours to DC from a business trip to Japan, and then got in his car and drove 5 hours to Pittsburgh to be with us. We hadn't known he was coming; he stopped someone on the street to ask directions to Children's Hospital, and was there JUST when my husband needed him. :blink:

mouse Enthusiast

That is wonderful news that she is breathing on her own. Yes, the little ones are so resillent. I remember when a dog attacked my granddaughter in the face. I had to prewarn my husband what to expect and that it would be better in the future. They operated on her face at midnight and the next morning she had had no pain killers. She could only eat soft things (she was just 3 years old) and when I gave her a popsicle, she knew right away which side of the mouth to suck on. We had to pretend that her face was not a roadmap of stitches so she would not think it was a big deal. After the second plastic surgery, she is now a beautiful young 18 year old, with one small scar that shows. But, the young handle these things so much better then the adults. I am so glad Tanya that all is going the way they expect it to. Thank you for always keeping us posted.

AndreaB Contributor

Wow Alison. Sounds like God's intervention to me. My hubby's family is from Pennsylvania.

More great news for Megan. She is such a fighter and Cole sounds precious too.

lonewolf Collaborator

Just wanted to add to the thoughts and prayers for little Megan. So glad she's recovering well.

VydorScope Proficient

Trying to decide if I should bother TCA with a phone call. On one hand I do not want to bother her cause she probably with her baby, or resting. On the other I want to check and make sure she does not need anything, I realy dont trust her to call and ask.

Whatcha y'all think?

Lisa Mentor

I think that as much heart as you have put into this, yes, I would call. If her phone is off and resting leave a message, and she can call you back when convienent.

Go for it :)

VydorScope Proficient

OKAY I called, i kept it short cause she was taking time to play with Cole. The took out Megans Catherdaer thing (how do you spell that?) and she said the swelling was down. Things are looking much better then last time. Megan's grandparents are up helping out and did the grocery run, so I guess Im ofgf the hook :(.

Thats about all I buged her for. She did again express much gratitude for all your prayers!

jerseyangel Proficient
OKAY I called, i kept it short cause she was taking time to play with Cole. The took out Megans Catherdaer thing (how do you spell that?) and she said the swelling was down. Things are looking much better then last time. Megan's grandparents are up helping out and did the grocery run, so I guess Im ofgf the hook :(.

Thats about all I buged her for. She did again express much gratitude for all your prayers!

Sounds good! Thanks :)

Judyin Philly Enthusiast
OKAY I called, i kept it short cause she was taking time to play with Cole. The took out Megans Catherdaer thing (how do you spell that?) and she said the swelling was down. Things are looking much better then last time. Megan's grandparents are up helping out and did the grocery run, so I guess Im ofgf the hook :(.

Thats about all I buged her for. She did again express much gratitude for all your prayers!

thanks vincent...i was emailing you when the phone rang and at was my brother in Ohio i don't talk to often so just got back on saw you'd 'followed' you gut and called...so glad you did as know she'd want to talk to you and so happy with the news you shared.

thanks for keeping us abreast of the newest info...

so happy with the progress..is she in the McDonald house or still stay over nite with Megan.=maybe you don't know was just wondering.

felt for the poor lady who had been there 52 days alone with her child..

wow.

nothing like having freinds when times are tough...

judy

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748

    Newest Member

    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.