Megan's Gagging Isn't Any Better

[key]

Dear Tanya and family,

Your note brings back so many memories for me and it brought chills to me too! Thanks for taking the time to share your thoughts. I am sorry for the mom who lost her little one. Watching a child suffer and not being able to help them is such a helpless feeling. I pray you will have continued strength.

Glad Cole is having fun with family and grandparents.

So happy her gagging was better today. We will continue to pray that it stays better.

Take care,

Monica

[debmidge]

I generally do not go near the "Parents of Kids or Babies w/celiac disease" as I really can't give advice to parents as I do not have children and in past, not on this board, but elsewhere in my life I've been told by parents that I really shouldn't give advice because I don't have children. That being said, again, I stay away in self-defense. I had no idea until I read this how sick Megan was; I cried as I read from page 1 to this page.

I am happy to hear that Megan is progressing well and I send my wishes that she keep it up and that she heals and becomes the happy, energetic child she should be.

Deb

[VydorScope]

MEGAN UPDATE

SUNDAY, JULY 30, 2006 11:48 AM, CDT

Megan had a really good night and rested well until about 5 am, then needed more pain medicine. Her fevers are staying low, around 99-101. That is a good sign. At times her temp has even been normal! She sat up in bed and played some this morning. She still needs the oxygen, but doesn't seem to be quite as dependent on it as she was. All of this is moving in the right direction. Praise God!

Jarod and I were able to sleep some last night too, which we both needed.

Thanks again for all the prayers. It's just watching and waiting now until the fevers are gone and she can come off the oxygen.

[Judyin Philly]

thanks Vincent

Tanya & Jarod, so glad you got some sleep last nite and Megan's report sounds so much better.

hugs and love and prayers

judy in philly

[nikki-uk]

I also appreciate your compassion for the baby that died. We've seen 2 pass on since we were here and one that we're not sure about. It's devastaing because we realize just how easily it could have been us. I don't pretend to understand why, but I do know that sometimes it is merciful that they passed. The little girl had lost multiple fingers and toes and was completely blue. Her mother stated that she had suffered long enough. We KNOW she's not suffering now. Like Alison, I will never forget that mother as long as I live. My heart broke for her in ways I can't begin to describe. Once you have contemplated the fact that you may outlive your child you become a different person. It's hard to explain, but those of you who have had chronically ill children know what I mean. Every day is bit brighter because you know they're still here, but at the same time you don't want a lifetime of chronic suffering for them.

We are blessed beyond measure by all of you.

Love and hugs,

Tanya

Oh my gosh,your post made me cry!

You put it so well.

Glad Megan's progress is going well.

{{{{{HUGS}}}}}

[AndreaB]

Tanya,

Glad to hear that Megan's temperature is getting better and that you got some much needed sleep. Thank you for taking the time to update us.

[evie]

[]

Tanya,

.

So glad you and hubby got some sleep and Megan can sit up for awhile.. Lots of prayers from this forum for you and family!! evie

[KayJay]

I don't post here much but I wanted you to know that I read the updates everyday and we are praying for Megan always. I am so glad that she is doing better.

[VydorScope]

MEGAN UPDATE

SUNDAY, JULY 30, 2006 11:06 PM, CDT

Megan had a really good day, sitting up and playing and waving to nurses. Her fever went back up to 101.3 about 4 today, so the doctors decided to do another round of cultures. They wanted to pull out her central line (an IV that goes directly to the heart) because of risk of infection. The problem was that they couldn't get another IV in after multiple tries, so they had to leave the central line in. They also did a urine culture (by cath). Her good day ended with all of that. Bless her heart, I just hate for her to get stuck all the time. Hopefully the cultures will all be negative and the fevers will dissipate.

I'm sure tomorrow will be good. I'll let you all know as we hear from the tests. Please pray for God to continue to heal her.

Love, TCA

[Nic]

Hi, I also have not been posting much but I have been checking in several times a day. My thoughts are with Megan. I hope she gets well soon.

Nicole

[Judyin Philly]

Good Morning Tanya

Went to bed early and didn't see your late nite post.

I've prayed for the wishes you requested.

""I'm sure tomorrow will be good. I'll let you all know as we hear from the tests. Please pray for God to continue to heal her."""

Love, TCA

In addition, I'm praying for the Doctors and Nurses and all care givers to use GENTLE and SKILLED hands when treating, handling and administerning treatment to our Megan. Strength too for Tanya and Jarod and family.

Thanks for taking the time to update us.

love

judy

[Cheri A]

Amen to Judy's prayer!

I am also hugging and loving on my children a little tighter these days as I think about all that sweet Megan is going through. I have been sharing about her with my kids too and they pray for her too.

[mouse]

Thank you Tanya for the updates. I am still praying hard for Megan and the whole family. May all the warm HUGS on this board incircle you and give you comfort.

[Judyin Philly]

Amen to Judy's prayer!

I am also hugging and loving on my children a little tighter these days as I think about all that sweet Megan is going through. I have been sharing about her with my kids too and they pray for her too.

Cheri A--I know how you feel..I talked to my '31 year old 'son (child ) in CA and gosh, I wanted to try and reach out and hug him so badly. I was talking to me Hubby last nite at dinner about Megan and he still can't get on the hospital link to see her.

I couldn't yesterday either even after doing the refresh??? are any of you having trouble getting on.

Judy

[wonkabar]

I also appreciate your compassion for the baby that died. We've seen 2 pass on since we were here and one that we're not sure about. It's devastaing because we realize just how easily it could have been us. I don't pretend to understand why, but I do know that sometimes it is merciful that they passed. The little girl had lost multiple fingers and toes and was completely blue. Her mother stated that she had suffered long enough. We KNOW she's not suffering now. Like Alison, I will never forget that mother as long as I live. My heart broke for her in ways I can't begin to describe.

Tanya- It's so wonderful to hear about how great Megan is doing. I've been following this thread just about everyday. I can't even put into words how happy and relieved I am for you and your family.

Both Zachary and Allison were in the NICU because they were preemies....I know this doesn't even begin compare to what you're going through with Megan, but having babies in the NICU is by far the most humbling experience I've EVER had. I've never felt so vulnerable and powerless in my life; you truly are at the will of the doctors and your baby's strength. Both times we were in the NICU another parent lost a baby. I'll never forget seeing the look on the one mom's face as she left the NICU and ran into the elevator. I can't even begin describe the pain and heartache I felt when I saw this mom run out. I, too, think about her around Allison's birthday and can't even imagine her pain. Everytime I felt badly for myself and sad for my own baby, I always put things into perspective and recognized that other parents had it far worse than we did...we ultimately got to leave with our babies. Perspective is a wonderful thing. My mantra throughout both of my difficult pregnancies and stays in the NICU was ...."Each day is a gift, each week is a blessing." I said that to myself everyday and believed every word of it.

You and little Megan are always in my thoughts and prayers. Megan is one tough little cookie...If I were Cole, I wouldn't mess with her when she got older!!

--Kristy

[VydorScope]

WOW!!!!

MONDAY, JULY 31, 2006 11:45 AM, CDT

So far, no fevers today. They just removed the central line and aren't trying for another IV unless another fever appears. Once she's about 48 hrs. fever free, we can go home! I can hardly believe it!

She's doing well without oxygen now, with her O2 Sats staying above 90. She's been happily playing most of the morning and is resting comfortably now. She's really doing well, praise God!

She lit up when she saw Cole this morning and has been entertaining the doctors and nurses, as well as us. She's just too cute!

WOW!!!

[Nic]

Does anyone know how the gagging is today? Wouldn't it be wonderful if she came home without that?

Nicole

[evie]

WOW!!!!

WOW!!!

WOW PTL evie

[jerseyangel]

Vincent--Thank you Thank you Thank you for that news!!!! I came on to see the latest update. This is truly wonderful news. Tanya and her family must be incredibly happy and relieved. Yea!

[DingoGirl]

such good news....what a blessing!

[penguin]

Yay! I'm so glad she's doing well!!!

[dlp252]

Great news!!!!

[GFBetsy]

Hooray!

[Judyin Philly]

wow--wow--wow!

Amazing how things can turn around so fast.

It's such good news hearing how her personality is shinning bright again esp when she sees Cole.

I pray things keep progressing and she can go home in 48 hrs...AMAZING.

JUDY

[schuyler]

Yay!!!!! Way to go Megan! I'm so glad that she's doing well, and I hope she'll get to come home in 48 hrs. How exciting!