blood – beatingcowdens

“Lucky” Number 13

Published on May 6, 2015 by beatingcowdens6 Comments

People count all sorts of things. Among the things we count are surgeries.

Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in. And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information. We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports. (Saved her another stick today when I could produce a recent normal liver enzyme panel!)

So today, surgery number 13, was not a surprise. It was anticipated and planned very deliberately for months on end.

The day started before 5, scheduled for a 6 AM arrival. But, in reality it started last night. Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.

We got up and out quickly. No fanfare. No time for a “selfie” of the three of us in our “Never Give Up” T-shirts. We checked in just past 6 and shortly after were performing all the typical surgery routines.

It is funny. There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries. The first group understands surgery “routines.” The second group raises some eyebrows. They are horrified at our use of the camera in the hospital. But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.

We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.) Several consent slips were tossed at me. The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask. Felix was given the necessary garb to walk into the OR. I stole a few extra minutes to clarify the plan with the orthopedist.

And I must confess there was some major anxiety. See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery. That’s why we coordinated surgery times. Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary. This was a far cry from the report after the MRI in January when we were told another embolization was necessary. But, it was now in the moment. They had a plan and I had to play along. The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary. He also promised me he would do his best. What more was there to ask, I guess.

In the waiting room I thought. Too much. But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.

After about three hours we were greeted by the orthopedist. His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.” He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.

She woke up slowly, but well, and soon she was alert. While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers. She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice. Lots of ice. For Meghan. And for me- as I managed to bang my head on the table. Insert exhaustion here.

The pediatrician on call was relentless reviewing the three sheet medical history. Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.

Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician. I have to tell you she succeeded on really aggravating my last nerve. She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions. By now the fatigue was starting to set in. I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me. I explained carefully that I was jaded by years of dealing with sub par medical professionals. She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications. Whatever… Truly. Spend some time learning about Cowden’s or ANY Rare Disease. Then we’ll talk.

Arrogant self- importance. Ugh.

We were called down to radiology at 2:30 so the feet could be X-rayed. The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy. Results tomorrow. In the mean time his caring makes him my current favorite.

Pain medications in place. Crutches safely in the corner. Lights are off. Movie is on. And the day is just about over.

Tomorrow we SHOULD be home.

For now, number 13 is in the books.

And my happiest news of the day came when the anesthesiologist said

my girl was “stable and strong” during surgery.

The little things are HUGE!

Thankful for the prayers and the guardian angels…

Tomorrow is a new day for BEATINGCOWDENS…

Now, we rest…

… some rain must fall.

Published on December 8, 2014December 8, 2014 by beatingcowdens2 Comments

Last summer we invested in a new roof for the house. I’ve never regretted it. Truth be told we had no choice. There were leaks and dry rot. All sorts of potentially serious places for significant damage. Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively. But we’ve stayed safe and dry. I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.

The weather forecast this week is pretty awful. And I started thinking about how, “into every life some rain must fall.” And I started to wonder, whether maybe we’ve actually had enough rain.

Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days. And life, well it can get dicey and complicated even without Cowden’s Syndrome. This year has been wild. Full of so much sadness, and hurt, and sorrow. And in between there peeked in some fun, happy times.

This month has been tricky.

These last 2 weeks….

I’m really starting to think it might be time to consider an ark. I’m not wallowing. Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow. Just, wow…

Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee. The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way. Thanksgiving weekend was spent home. Low key. Leg up. Resting.

We had goals. All geared towards December 8th. Goals set by the medical team. Swim practice was to begin again tonight. And Mom, FYI – goals are different from plans… 🙂

We slowly weaned off the crutches, and the pain medicine. We moved to an ace wrap as needed. By last Monday the 1st she went to school still in pain, but unassisted. The swelling was going down. The healing had begun.

But by Friday she couldn’t do it. Had to stay home because of the pain. The swelling looked a little off too. More rest.

Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.” The knee looked horrendous. And very similar to its pre-op state. More resting. Some pictures. Some brainstorming.

All the while Allie, our oldest dog was having troubles of her own. Allie, lethargic for a bit – collapsed on a walk. Felix called me to pick him up carrying 70 pounds of dog. Off to the vet for abdominal x-rays and a negative test for pancreatitis. There was no discrete mass of the x-ray, just some shadowing. They decided to try to treat for pancreatitis despite the negative test. There aren’t too many other good options and I am worried.

And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.

And we took pictures of Meghan’s leg and elevated the knee.

Today we got up early to give Allie her medicine together.

Then Meghan dragged her painful, aching leg around school until I could get us an appointment.

1:30 arrival at Lenox Hill. Sonogram initially showed no blood. Then, wait for it…. there it is. But no obvious spot its coming from. Shocking really. Could it be residual from the procedure two weeks ago? It looked to be about 5ccs. Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out. Now all of a sudden – we’ll just wait and see.

They used words like “discomfort,” and “irritating.” She used words like, “excruciating.”

Not the first time we haven’t seen eye to eye. But he’s all we’ve got. One of very few doctors in the north-east to operate on these in kids.

I get not racing back in. I do. But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.

Wrap it. Elevate it. Put swim off another week. (Tough talk from the guy who initially said she wouldn’t even need crutches.)

In the car Meghan told me to get my Christmas shopping done. Just in case. She hopes she’d wrong – but it doesn’t feel right.

My money’s on her- and it’s a bet I hope to lose.

Allie, she’s super mushy. Who knows?

Online shopping here I come.

I’m done with the rain. Really over it. Rainbow anyone?

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!

Puzzle Piece

Published on May 9, 2013May 10, 2013 by beatingcowdens3 Comments

I remember being much younger and loving puzzles. We would set them out on the table at home and everyone would take some time trying to get it going. They were big and had lots of pieces and were often slow going at first. Everything looked the same, and sometimes it could take hours to fit in a few pieces.

Then, over the next few days, and sometimes weeks, with everyone taking a turn, slowly the picture would start to take shape and the puzzle would come together. It was always so exciting once you could make out the features, and so much easier to plug in the missing pieces.

I remember the feeling of satisfaction as one would be completed. There was something especially gratifying about those last few pieces. It was that feeling of satisfaction. We set out minds to this. It took a few of us, but we got it done. We figured it out – together.

By now you can probably see where I am going with this.

Today marks one year since I wrote my first blog post in 2012.

In one year the posts I have written have been read over 30,000 times. People have stopped by to read some – or all of our journey with Cowden’s Syndrome.

I have met other Cowden’s Sufferers through this blog, and on the internet. I have received messages, and corresponded with quite a few. I have learned their stories, and heard about their puzzles.

I have also “met” a few with other puzzling disorders,figuring life out and getting by one day at a time.

I am ~~sometimes~~ forever humbled, and amazed by the odd and abstract idea that people who I don’t know have gotten to know us, and used us as pieces to help complete their own puzzles.

I noticed a link on my blog today from “pinterest.” Having never been to the website, I clicked the link to find a picture of my family. http://pinterest.com/pin/290974825894950598/

I was pleased that it was used in its proper context, and was mentioned in terms of rare diseases. But, I was still amazed. Someone had read, and linked, and…

Well, the possibilities are endless. Thank goodness for the internet.

Where else would I meet people from all over the world,. and swap stories about a genetic disorder with an occurence rate of 1 in 200,000? Where else would I find organizations like

PTEN World https://www.facebook.com/ptenworld?fref=ts

The Global Genes Project https://www.facebook.com/globalgenesproject?fref=ts

This last year of blogging has been an awakening for me. It has opened my eyes to so many other people, their stories, and the world at my fingertips. Since our diagnosis in the fall of 2011 it has become so important to become aware, to gain support, to advocate for others, and for ourselves.

I remember working on puzzles as a little girl. I remember that feeling of satisfaction when the puzzle was complete and the picture was clear.

I don’t do those kind of puzzles anymore.

Now I figure out how to prepare 2,000 denim ribbons and get them distributed on time for Rare Disease Day.

Now I work on helping my girl find her place in this world – trying to be a “regular” kid, yet undergoing so many more stressors than any 9 year old should.

I work on puzzles that lead us from one doctor to another, dropping them like leaves off the trees on a fall day.

I work on puzzling questions, and I persist until I get answers.

I get overwhelmed sometimes – looking for the pieces I can’t seem to find.

Sometimes I want the puzzle to have its edges all done, the way I learned. I want it to be neat. I would like all the matching colors to go together

But, that isn’t how life is designed to be. Not with Cowden’s Syndrome.

Not for any of us really.

Maybe it’s not a puzzle – but more of a domino game… branching off in so many different directions. Occasionally stopped by a dead end – only to find another path.

Or maybe it’s just a puzzle of an “atypical” sort. Not one that actually fits in a box. One that requires patience, time, dedication and focus.

In front of me tonight are 22 pages of blood work drawn on my daughter over the last month. There are some definite issues. My phone consult with her doctor is a week away. In the mean time I am left to try to put it together the best way that I can.

I handle each piece delicately, gingerly. I don’t want to damage anything, or miss anything either.

There is no picture, no model to duplicate. There are no directions. No guide. Just instincts. Prayer. Love and support of friends far and near.