gastritis – beatingcowdens

Gratitude

Published on November 26, 2014November 27, 2014 by beatingcowdens4 Comments

Gratitude.

It’s always a good time to be grateful. Especially Thanksgiving week with catastrophe averted. Even full of memories from a year ago, I feel gratitude.

Just a week ago I wrote a post called “Plot Twist”

https://beatingcowdens.com/2014/11/17/plot-twist/

where I mentioned the AVM in the knee was starting to become a problem.

One day I will learn to trust instincts. I will look back on signs and think – I should have seen that coming. But, for now I remain a bit of a slow learner.

See, in May when we ended up with the gastritis mess, there were warning signs. For days prior she spoke of the “fire” in her throat. Of this general feeling of being unsettled. And then everything broke down.

Monday was not the first time in recent weeks she had complained about the knee.

In August, about three months after we stopped the Celebrex, there were signs. Subtle signs. We went for the MRI. We went for the visit. The doctor saw “something,” evidence the AVM was still “live.” He told her to wait until there was pain, and then come see him. Our appointment was for December 1.

The pain has been progressive. But, right or wrong, having a rare disease, and living with a child who has one too, I often have on my “suck it up and let’s go” personality.

“Mom, my knee hurts. I think it’s swollen.”

“Yes. it’s a little swollen, but mine is too. You’ll be ok.”

“Mom, my leg is throbbing. I can feel it pulsing.”

“Mine does that too – here, feel. Now let’s go – we have to get to school”

Ok, so looking back, perhaps these are not normal conversations. I am in consultation with a vascular surgeon to address the messiest of my leg issues – as soon as I can fit it in. Maybe most parents would have been more bothered. I mean I WAS bothered. But, if I stopped every time – goodness, we’d never even get out of the house. If I addressed every pain – I’d give this disease more power than I’d like it to have.

So for now, we “suck it up” together. Different. But the same.

We talk about other people’s pain. We wonder about different types of pain. We think about what it would be like if the pain could be fixed. We wonder about kids who use pain as an excuse. We acknowledge that you can never know what goes on in someone else’s body.

So we adopted positive thinking and visualization. She drew a smiley face on that knee to convince herself she could get through it. And she pressed on.

Sunday, while I was in Vermont, she was at a swim clinic. And Monday, she finished an hour and change of practice. Walked past me smiling. Walked out of the locker room and basically fell to the floor.

I did some more of my “suck it up” talking, as my heart sank. This was the real deal, but we were too far from the car. Everything about her body language told me we were in trouble. I finally, by Grace alone got her into the car, and headed immediately to urgi care. We lasted about 10 minutes there before we were booted to an ER. The leg was getting frighteningly larger by the moment.

My gut. My instincts told me to go to the knee surgeon. So we threw a bag together and got to Lenox Hill Hospital on 77th street.

After I got them to page her doctor, we immediately were notified we’d be admitted.

When we got to the room at 4:30 AM the tell-tale “NPO” (nothing by mouth – for any surgery rookies) was on the door. Can’t knock the kids timing. I knew he operates Tuesdays.

The team arrived mid morning to assess. They set her up for 1 PM surgery.

“That’s blood. And it has to be taken care of now.”

Ok – show me where to sign.

Blood and joints don’t mix. Not without consequences. This I know from experience with this child.

Get it out.

And as I waited… that awful waiting time… my mind wandered. I thought about her swimming, and the time she is trying so hard to beat. I thought about how much harder she’ll need to work to get it back together. I thought about it being unfair. And I thought about a mom in California whose extended hours on the phone to me as we were panicking and newly diagnosed were of such solace. I though of the hell her girl has gone through. Over and over. Then I thought about my internet friends in Australia. One young lady who had her thyroid removed AGAIN. Yep – two partials, and then one side GREW BACK. Unfair. Then the ultimate lesson in unfair in the countless brain surgeries, 10, 12 hours at a clip for a young woman with a similar vascular condition to Meghan in a much more dangerous place. I thought about her life on hold. I thought about her recent surgery derailed as they discovered multinodular goiter on the thyroid. I wished I could have tea with them. Right then. To talk to someone who does this. This hospital thing. This surgery thing. Like its their job. Cause that’s just what we do.

And there are no contests. No one has to have it worse. No one makes you feel like it’s not important. This just is our life. This is life with Cowden’s Syndrome. Beat it. So it doesn’t beat you.

And when they came to get me, to tell me she was in recovery, they told me they drained 50ccs of blood out of that knee-joint. Apparently there was a hole about the size of a pea. It got plugged. A fast flow leak. They hope that’s all of it.

This is about 50ccs of water - roughly the same amount of blood that filled her knee joint. — This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.

Flashback to 2012. Last surgery, when the doctor was so unsettled that there was ANY blood in the knee-joint that he told us about the damage it could cause and sent us to Boston for a consult with a doctor who could scope the knee-joint. And we went. But we never went back. Things got better. We started Celebrex a month after that surgery in 2012. That was number 4. Number 5 was yesterday.

In 6 weeks we’ll go back for post-op. We’ll talk about whether things are better. There is someone in New York, on his team, doing that scope now – if she needs it.

In 6 weeks I hope she’s kicking some serious butt in the pool. I hope this is a memory. An update in the growing medical file.

This is life. This is life with Cowden’s Syndrome. This is our life.

Everyone has something. And yes, it could be worse. But right now, at this moment – we are tired. And that’s OK too. I am emotional, remembering a year ago today we admitted my Dad to the VA hospital that he would never leave.

Thanksgiving will be quiet tomorrow. Just the three of us. And reflective. This week is going to be wracked with emotion.

For tomorrow, I’ll take the fact that my husband makes a mean turkey and a fantastic Gluten Free stuffing as a win.

The little things ARE the big things. We ARE BEATING COWDENS!

Avocado and Isagenix – What’s in YOUR suitcase?

Published on August 12, 2014August 12, 2014 by beatingcowdens2 Comments

It’s been almost two weeks – a long time for me not to write. My head is spinning with things I need to get out in my blogging “therapy” sessions.

As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.

Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.

Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis. (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip. But we knew that would seem more like a punishment than a precaution. So the reservation held – August 5 -12.

In the week leading up to the trip time seemed to fly by. I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time. And as we were packing I began to gather food. See, when you travel with a kid with food allergies, you don’t travel without food – ever. Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.” There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars. In the past we also always packed tomato, and barbecue sauce too. Every morning we would fill small containers and have it to flavor anything dry along the way. Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.

So, we went to the next best thing – avocado.

I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated. She liked it to moisten food, and there were plenty of days she ate a whole one. So, into the suitcase went a container full of 8 avocados.

Use what you know.

And in another container nearby were several packages of Isagenix shakes. Those, I had packed with intention of using them myself. So glad I did.

When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30. We rode the Magic Express and got to the hotel by 10:30. At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.

And find the Magic we did.

We spent the day riding, and laughing, and watching and taking in all the wonder around us. We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection. Her stomach was happy. We were happy.

Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.” The “Fab Five” greeted us, and the chef took us to the buffet. I tried to choose carefully, as the selections seemed a bit questionable. I was assured they were within her dietary restrictions. And there was the drink. We asked for it diluted, as it wasn’t her normal fare. But he was busy and I suspect by the third glass the waiter had forgotten to dilute it. And there was the GFCFSF sausage… and…

By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat. She asked me for food, and even as I handed over the pretzels I should have known better.

She slept fitfully. So much so that I kept waking to check on her.

“New room… new place.” I kept telling myself…

And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.

“Houston… we have a problem.”

We exchanged those “uh-oh” glances – Felix and I. And we followed her to the room.

And barely did she make it in the door then the familiar violent vomiting from May returned. So much. So forceful. Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.

It went on for hours in our hotel room in Walt Disney World. And every time it seemed to calm and we tried water, bread, pretzels… it all began again.

We called our GI from home who instructed rest. And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure. After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.

And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time. There are good people.

But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.

He was amazing, and unusual, and smart, and introspective. And he sat with us for a good hour learning about Meghan. Then he sized up that she was not dehydrated.

“What do we do?”

“Go with what you know.”

Not so easy hundreds of miles from home. But, she was hungry. And there were avocados. And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.

Then he asked what she drank and we said “Coconut Milk.” And just like that he was out the door headed to a whole foods 6 miles away. HE took money only for the milk itself, not for his gas or his time. And we had options.

WHO does that? This stranger… this “standby doctor” so moved and so interested in helping…

So there was avocado, alternating with coconut milk at very deliberate intervals. And once the avocado held itself in place we had a few options.

“Can I have a shake?” MUSIC TO MY EARS…

A half shake in 8 ounces of coconut milk. Followed by a half of an Isagenix meal bar.

By 9 she was well enough for a ride around the hotel.

By the next morning we cautiously resumed our trip. With Isagenix, and an avocado in my backpack all day.

Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!

Glorious Unfolding

Published on May 14, 2014 by beatingcowdens2 Comments

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding…

Steven Curtis Chapman

I believe in God. I believe in the power of prayer. I don’t believe in a predestined life, but I don’t believe in coincidence either.

This song was playing in the car last week one night. Meghan was having a tough time of things, and I had gone to clear my head. When I came home she was still awake so I downloaded it to her Ipad. We laid together in her bed and held each other. The tears flowed. The comfort of each other, and the comfort of the knowledge that we were not alone – not abandoned – ever – eventually allowed her to rest.

The song is in her playlist for “bed.” It is a beautiful compilation of songs with a purpose. And as I sit, in a dark hospital room, on our 6th night here the songs play in the background. Their messages soothing for my tired soul.

I didn’t want to be here. I mean not in any hospital, but especially not in THIS hospital. Somewhere along the line I had decided that I would NEVER want to be HERE.

Well that was my first mistake. Cause really, it’s not up to me. And that is a hard reality to accept.

The pediatrician works from here. They respect him. We adore him. He loves Meghan like a granddaughter. She was really sick. If I headed anywhere else I would have been flying blind.

They moved at a pace I sometimes felt was too slow. But, I as an anxious Mom, am in no position to judge pacing.

There were staff I could have done without – so I excused them from our room. But not most of them. Most of them have been kind and compassionate.

Being local allowed for FAMILY and FRIEND visits, and even a visit from our pastor, which mean so much to Meghan on really long days.

The tests were run one at a time, but they all mattered.

Once they realized how much the IV – and all its complications – caused her grave anxiety, they took extra care.

The dietary team has done their best with a complicated kid.

The GI doctor has been thorough, professional and meticulous. She had read about Meghan and about Cowden’s. She TALKS to the pediatrician, and our hematologist in NYC, and the ENT we will soon see.

The lab tests were all inconclusive.

The sonogram didn’t tell us anything.

The CT scan was essentially normal.

The medications, continuously adjusted, have provided little relief.

So as we prepared for the endoscopy we were anxious.

See, you never WANT anything to be wrong. But then there is a point where you KNOW something is. Then you worry about finding out what it is, or NOT finding out. It’s hard to know what to be more worried about.

Heading into the test today we were both anxious.

They say a picture is worth a thousand words.

We have pictures now.

Pictures of a GI tract so damaged by SEVERE Gastritis that it will take months to years to recover it. She has damage from the top of her throat straight down into the beginning of the small intestine.

Inside the stomach is evidence of ulcerations. Many.

The esophagus that should be smooth – a mess of bumps and sores.

Remind me to NEVER EVER EVER doubt her tolerance for pain.

This one is a favorite of a dear internet friend :-) — This one is a favorite of a dear internet friend 🙂

The pictures make me ill. Because they are evidence of MORE suffering in my young girl.

To her they are vindication. And that makes me sad too.

She hurts every day.

She says it. And I tell her I get it. But I don’t think I do.

Pain like THAT has to be isolating.

Because every day she has to get up and function anyway…

And not too many people her age would even try to relate.

The GI told me she sees damage like this “every once in a while” in patients, but they are always 50 and older.

She told me the biopsy will likely show it to all be medication induced. The medication I have given her for years. The miracle drug that kept her mobile.

We will wait until next Wednesday in her office to look at the pathology, and to review every prescription and supplement that crosses her lips.

In the mean time there is medicine to control the spasms in the stomach every 4 hours. There is medicine to try to control the acid so maybe she can start to eat.

There is more time off from school. At the tail end of 5th grade. When the days are supposed to be fun.

There are MORE dietary restrictions.

But somewhere in the pain is vindication. For the girl who knows her body better than any doctor. There is proof. There are pictures.

But I don’t believe in coincidence.

This is her second GI related hospitalization since her thyroid was removed. That’s weird.

Her thyroid numbers are NOT normalizing. So she has been “hypothyroid” for three months.

I mentioned it a few dozen times this week. No one bit.

I’ve hit google. And my sister’s friend hit on an article too. I will keep looking.

Somehow this is all connected. The thyroid. The medication. The pain. The gastritis. The Cowden’s Syndrome.

But I have to be patient. The pieces will come together. In time. With hard work. And good doctors. And prayer.

We prayed today for an explanation. We asked for an answer to explain her pain. Our prayers were answered.

Now we pray for healing. Of her tired body. And her tired mind. We pray for the development of a TEAM of smart doctors who communicate, and we recognize with gratitude it all began where I never wanted to be.

There is work to be done. There are more concerns to be addressed. The road will continue to have bumps and twists and turns.

But somewhere along the path there is time to be grateful – for the GI who trusted her gut and did the scope TODAY. For the anesthesiologist who repaired a failing IV while she was ASLEEP. For my girl who gets to say “see this is WHY my stomach hurts.”

And that’s all I can process for one very long day.

I think I’ll sleep between the midnight and 4 am doses.