Sunday, November 4, 2012

The End Of The Tunnel - Maybe - Probably - Oh How I Hope

Do you remember when Em was a tiny baby and she got a life threatening infection in her incision after her first open heart surgery?
She had been home about a month before she was taken by ambulance back to the hospital where the attending doctor told me her life could easily go either way.
I think in all that we have been through with Emily, that was the most scared I have ever been.

In the weeks leading up to that day I asked every medical professional we saw to look at Emily's incision.
You might remember that I stopped Emily's pediatrician in the hallway at church and made him look at Em's incision, because I was worried something was wrong.
Everyone told me that she was fine, that her incision looked a little bit red, but it was fine.
And as I sat in the ambulance and prayed for my baby's life, I knew that I should have fought harder to be heard.

I've wondered since then if I would ever come in contact with a doctor who would listen to me - who would sincerely take the time to listen and actually hear my concerns, and base their care off of my concerns.
Up until last week I didn't think it would ever happen that way.

The longer Emily has been off of the formula that I'm now convinced she had an allergy to, the more frustrated I've been at the GI doctor and dietitian who told me over and over again that there was no way Emily had an allergy, and that they would not even consider changing her formula until she was two years old.

I'm frustrated that they blamed all of her throwing up and misery on reflux.
I'm frustrated that they continued to up the dosage of her incredibly expensive reflux medicine, knowing that it didn't do her any good.
I'm frustrated by a lot of things ...

...and after meeting with a new GI doctor last week for a second opinion, those initial frustrations have only increased - to the point where I'm considering writing a letter to both the original GI doctor and the hospital.

Did you know that the heart and the esophagus develop at the same time during gestation?
And did you know that if you have a baby with a heart defect there is a good chance you will also have a baby with esophageal problems?

I didn't know, and I'm surprised that out of all of the doctors we've seen, it took until Em was 15 months old for someone to tell me this.
Within just minutes of me telling the new GI doctor Emily's history she had given us a diagnosis - different than anything we have ever heard.
What everyone else said was reflux that Emily would eventually grow out of is actually esophageal spams.

And although her esophagus looks normal, it is far from normal.
My poor baby girl has been having these spasms multiple times a day, and every time it happened, she felt like she was choking and probably couldn't breath, and because she would panic everything seemed worse for her.

If you add in the probable allergy to her formula that made Emily throw up every single day of her life,  our girl really didn't stand a chance.

For some reason the spasms are much worse in the morning, and while switching formulas made a world of difference, it wasn't enough to take away Emily's misery.

I could give you a list a page long of the differences we see in Emily now that she is on her new formula.
The GI doctor confirmed that changing formulas was the best thing we could ever have done for Em.
But the second best thing that's ever been done for Emily?
A new medication that the GI doctor gave us - one that relaxes Emily's esophagus.

I gave Emily her first dose of the medication last Wednesday evening, and have given it to her every evening since then.
My girl wakes up happy - happier than she's ever been.
She doesn't retch.
She doesn't arch her back.
She doesn't scream in pain.
She doesn't throw up.
And it doesn't take 20 minutes to calm her down once her body relaxes.

Emily hasn't thrown up a feed once in over two weeks, and in the last six weeks she's only thrown up a handful of times.

I threw the plastic table cloth away on Saturday.


And instead of sitting in our laps, miserable during every feed, our girl just wants to play.
The change has been dramatic - and I'll be forever grateful to a GI doctor who really heard what I was saying.

You can all sigh a big sigh of relief - on the count of three we can all sigh together.

It's only been four days, but I have hope that four days will turn into 40 days and then 400 days, and by then the last 11 months of Emily's life will be something I can laugh about, and I'll be able to say to Jason, "Remember when our daughter threw up every dang day of our lives?"

The best part of all will be that the question is in the past tense.









27 comments:

Sam said...

Oh Noelle, this is such amazing news! So thankful that someone finally listened to you. Moms always know best. I'm so happy and relieved that sweet little Em can have relaxing mornings and enjoyable feedings. Judging by the size of my butt, my feedings are the best part of my day - everyone should experience that! Hehe. But in all seriousness, thanking God for this news! :)

Tristi Pinkston said...

Oh, wow ... I'll be praying along with you! How awesome to have such marked improvement so fast.

Lalis said...

I am so incredibly happy for Emily! And GO MOM for switching doctors!!

As happy as I am with this news, it makes me angry. You know how often I hear stories of people jumping from one doctor to another because they can't find what's wrong with them? It seems to me that hardly ever do doctors look at a person as a whole, just their symptoms...

Same thing was going for poor Em until someone was able to connect all the dots. There is only a handful of doctors like that nowadays and it shouldn't be like that.

Did you know that grad students can't stand med students who rotate through their laboratories because they tend to be incredibly inept? Scary. You would think a medical doctor should have an understanding of the science behind the profession they want to practice, but most of the time they are like robots... Good for memorizing and storing lots of information and performing well-practiced routines. Where is the critical thinking? Again. Scary.

...Whatever you do, please don't be mad or frustrated with yourself. We go to the so-called professionals for a reason. Don't think about writing a letter. Do it. It is very likely that Emily would have never progressed had it not been for a correct diagnosis, and they need to know that.

TortugaRachel said...

Hooray!

I am so happy for you, and for Jason, but most especially, for Elimy. To not have to go through torment every morning, to be able to be happy and want to play: what a blessing.

I'm so thankful that God helped you stick to your gut feelings on this. One thing I know to be true as a parent is that no one, and I mean not a single, solitary other person, knows my children better than I do. No one. Except God. And unless God himself tells me my instinct is wrong, I will trust my gut when it comes to my kids.


By the way, He hasn't said anything to me about it yet, so I figure I'm on the right road for now.

Anonymous said...

Best post! So glad you could find someone wig answers! Time for the backpack!! She's getting big!
Molly Schultz

Anonymous said...

You continue to touch my heart . Thank you....
Merity
( thats all I can type one handed as I wipe the tears with the other one . )

Anonymous said...

Oh my gosh, I can't believe this. I went to the emergency room in the middle of the night about six years ago with the worst chest pain I could ever imagine. I am not a person with a low pain threshold, but this pain was unimaginable. The doctors thought I was having a full on heart attack. I was screaming in pain, and when they sent me in for tests, I threw up all over the technician. It was the worst pain I have ever had, even more than childbirth. They finally gave me morphine, once they determined it was not my heart. The diagnosis was esophageal spasms!

Poor little Emily. No wonder she has cried and been miserable. I am so happy for her that you have found a solution, and yes, please write to the hospital and former doctor to share your distress that she has had to endure this condition for such a long time.

Always remember, as her mother you know when something is not right, and continue to advocate for her. You are a wonderful mom, so happy for you all.

Leslie in CA

elizabeth said...

Awesome news! How fustratIng that it has taken so long for this to be diagnosed. x

-stephanie- said...

Tears of joy. You're an awesome mom to Emily. Hugs, and love.

Angie said...

Look at her! I am so happy she feels better. She makes me smile. Love you both.

Mr. Thompson and Me said...

Mother's intuition. I'm glad you are following yours..

Every. Single. Time.

Hilary and Eric said...

YAYAYAYAY!!! i love her I love her I love her!!! So glad you called. YAYAYAYAY!! I was really hoping you would have the same wonderful experience with her and you did you did you did!!! WOOHOO. Slightly excited here. One more YIPPEE!!!

Cox Family said...

It's so great when you find a good doctor that helps. I love our pediatrician because she is exactly that way. I'm so glad that Emily is doing so well and hope we get to see you guys around Christmas!

Elleny said...

HALLELUJAH!

Jake & Stephanie Ellinger said...

Noelle - I'm so HAPPY for you guys! Would you mind emailing me some information? Nathan is on a good formula for him now (FINALLY!), but he still tries to throw up his food a couple of times a week. Would you mind emailing the docs name, this new medication, and how the dr. determined it to be the spasms? I would Nathan to take in more orally, and I know if he feels like throwing up so much that its hindering us quite a bit. By the way - I still owe you a lunch date :).

My email: ellingerfamily@gmail.com

Anonymous said...

This makes me want to cry - for joy that you have found someone who knows how to help Emily - for grief over all she has had to endure because a doctor had to believe that he/she knew better than you what she needed. Pride is ugly in all it's forms and causes so much unneccessary suffering because someone needs to be right. I would definitely write to those other doctors. I think I might also tell them that you are going to let everyone who reads your very popular blog know who they are. I would certainly like to know.

love my boys said...

I would love to know the name of the GI Dr that listened to you. It's good to know who the good ones are. I'm happy things are a little better for you guys. ♡

Beth Zimmerman said...

Hallelujah! =)

Jamie said...

YAY!!!!! Best news I have heard in days, I am SO happy for you and Jason and most of all for little Em!!

Anonymous said...

Don't usually comment but keep track of Emily on a regular basis. All I can say is praise God! Brought tears to my eyes knowing that sweet baby isn't in pain anymore.

Aimee

Shan said...

That is fantastic news. It gave me happy tears and chills.

I do hope you write those letters. Include one to your insurance company; they should know what kind of doctors they have on staff.

Carol said...

You are an amazing mom! Good for you finding a new GI and trusting your instincts.
My favorite phrase from your post:
"our girl just wants to play".

Thomas & Alicia Montgomery said...

SIGH! You are an awesome mom for Emily. I have a very similar blog post to post soon about how our new GI dr. prescribed a new med for my daughter that is helping her to not vomit. (after seeing 4 or 5 GI dr.'s previously for the past 2 years)! I suppose it's all about Heavenly Father's timing and our faith that every thing will work out. Also, I too am curious about what formula Emily is on. Thanks for keeping us well updated!

Nessa said...

Doctors can really be so stupid sometimes. I'm glad you seem to finally have it figured out and have gotten rid of the puking. I like hearing that Emily's happy and doing great.

acte gratuit said...

I have a similar story about my oldest son Max. The very first time I gave him formula as a baby (I was nursing but wanted my hubby to take the night shift with formula occasionally) anyway, first time he got formula, he projectile vomited it across the room. Same thing happened the second time. My mom said "Maybe he has a milk allergy!" So I only gave him soy formula after that and he never threw up formula again. But NO Dr. would believe me. Ever. So as he got older I would give him cheese or yogurt or a bite of my cereal with milk...and he would throw up. Every single day.
And the Drs. kept telling me it must be something else and couldn't be milk.
Turns out, when they finally agreed to prick test him as a FOUR year old after years of suffering, his biggest reaction was to MILK protein!!!!!!!!!!

sean's smitty said...

Hi Noelle, I just stumbled on your blog from Simply Klassic and have been catching up with your story. When I got to this post I had to read it out loud to my husband because it could easily have been written by one of us. We've been through a very similar journey with our daughter, also a heart baby. The yellow NG tube caught my eye when I read your post over at Simply Klassic.

We went through multiple GIs before we found someone who was on the same page as us. We went through multiple reflux meds and appetite stimulants, etc. I can relate to the vomiting and retching and non-po feedings of which you speak. Noone ever suggested esophageal spasms though, and I am going to straight to our GI with that question.

I will pray that you will be able to speak of all this in the past tense. It is good to be able to say: remember when... and remember the daily vomiting episodes beyond count and the sound of her feeding pump, and measuring mls of formula and counting grams of weight. Lord willing, you will be there too!

I read your post about lonliness, and I wanted to say, too, that I think having a child with such medical issues to the point that your life totally revolves around doctors appointments and med schedules and feeding schedules can be totally isolating. I wish I had found a support group or online community when we were in the thick of things with our daughter. Do you have anything like that? Just know, you are not alone in this. And I know I don't know you, but I can related. And I hope you don't mind me giving my two cents...

Best wishes for your dear EM and good luck with the new meds and formula!!!

sean's smitty said...

Hi Noelle, I just stumbled on your blog from Simply Klassic and have been catching up with your story. When I got to this post I had to read it out loud to my husband because it could easily have been written by one of us. We've been through a very similar journey with our daughter, also a heart baby. The yellow NG tube caught my eye when I read your post over at Simply Klassic.

We went through multiple GIs before we found someone who was on the same page as us. We went through multiple reflux meds and appetite stimulants, etc. I can relate to the vomiting and retching and non-po feedings of which you speak. Noone ever suggested esophageal spasms though, and I am going to straight to our GI with that question.

I will pray that you will be able to speak of all this in the past tense. It is good to be able to say: remember when... and remember the daily vomiting episodes beyond count and the sound of her feeding pump, and measuring mls of formula and counting grams of weight. Lord willing, you will be there too!

I read your post about lonliness, and I wanted to say, too, that I think having a child with such medical issues to the point that your life totally revolves around doctors appointments and med schedules and feeding schedules can be totally isolating. I wish I had found a support group or online community when we were in the thick of things with our daughter. Do you have anything like that? Just know, you are not alone in this. And I know I don't know you, but I can related. And I hope you don't mind me giving my two cents...

Best wishes for your dear EM and good luck with the new meds and formula!!!