Close To Our Hearts

**Disclaimer: I wrote this to explain why this is such a big deal to our family but as I reread it I realized it sounds more like a commercial similiar to those of Sally Struthers or Sarah McLochlan.  I promise I'm not using guilt to encourage donations.  But I know there are those of our family and friends that will understand my need to share and express myself.  Seriously.  Not begging.  Just sharing.**

It's funny what nighttime does to our imaginations.  Sometimes a thought enters our brains as we close our eyes and vivid images swirl around, touching our emotions.  Those emotions can be comforting, exciting, or scary enough to keep us awake.

This has been happening for Matthew lately.  This summer he'll turn 9.  Not only will he one year away from double digits, but he'll be preparing for his next cardio MRI.  Insert long sigh here.

October 2005

Matt has always been a very quiet boy.  Quiet, but perceptive.  He knows that an MRI is necessary to plan and prepare for his next heart valve replacement.  And even though a catheter may be used instead of open heart surgeries when he gets bigger, he may be too small for a catheter next time.

And so, at night, Matt's mind begins racing and he thinks of his own mortality. 



I wish I were the type of person that is fine letting him believe there's nothing to worry about.  But I feel strongly that knowledge is power.  I don't want him waking up from anesthesia and panicking when he sees tubes draining blood and fluids out of his chest.  I want him to know that even though his heart condition is scary, lots of people love him and pray for him.  We have open and honest conversations several nights a week. 

March 2007

So when Matthew brought home a packet of information about his school participating in the American Heart Association's Jump Rope for Heart event, he was very interested.  He told me he wants to help raise money for other kids to have the help they need.  I explained to him that these fundraisers help kids like HIM.  Also, when we first learned about his heart condition we got a lot of information about it from the American Heart Association.  This is an organization that has helped our family.

November 2012

Matt and his sisters have now signed up to participate in the Jump Rope for Heart.  They have websites created for each of them to accept donations for their jump roping attempts.  Of course, I'm going to need to stop by the store and purchase a few more jump ropes so they can practice between now and February 15.  They are nervous that they won't be able to jump enough. 

I think the idea of this fundraiser has helped Matt feel a little more empowered.  He can't do anything to heal himself, but at least he can jump some rope and help an organization that helps "kids with special hearts" (as quoted from the flyer the kids brought home from school).  And I don't know anyone with more of a special heart than Matthew.

If you'd like to donate, please visit these links by February 15, 2013:
Matthew's page (Donation goal: $14)
Abby's page (Donation goal: $100)
Emma's page (Donation goal: $20)

Heart Update

This summer was filled with lots of different appointments.  I tried to schedule everything before school started up again to make life a little easier: well-child checks, dentist, orthodontist, eye doc.  But Matt's cardiologist couldn't get us in for a check up until today.  So, here it is the end of the third week of school and already Matt has missed half a day for a doctor's appointment.  Oh wait, I nearly forgot last week when I had to check him out early to get a cast on his arm.  Man.  There's nuthin like starting the year off just right, eh?

Matt and Josh on Matt's baptism day
July 2012

Today's appointment actually went pretty well.  If you don't remember, Matthew has Pulmonary Atresia and there's a pretty descriptive post about it you can find HERE.  Last summer Matt had an MRI and you can relive that adventure HERE and HERE.

First we had to do the obligatory EKG.  Matt got all the stickers all over his torso.  When the nurse went to pull them off, they all stuck a LOT.  Poor boy was stuck in that place between laughing at the absurdity of the situation and crying out in pain.  Luckily, he chose to laugh and the nurse said, "Just wait until you have your 'man hair.'"  I can only imagine how much more the EKG stickers will hurt in ten or fifteen years.  Yikes.

We went into the echocardiogram room and Matt and Millie happily watched Over the Hedge while I tried my best to read the echo myself.  Yeah.  That didn't happen.  I've seen many of those echoes over the years and still have no idea how to know what's going on.  I always come out of that room determined to go back to school to become an echo tech so I can be much less ignorant than I am.  Maybe when I have all the kids in school.  Eh, probably not, but it's a nice thought.

The doc came in with a medical student.  I love it when the students come in.  Matt's heartbeat is so unique that it's kind of fun to watch for that look of, "Holy cow, what was that?" when they listen to his heart.

The final verdict came back that Matt's heart seems to be as good as it was ten months ago at his last check up.  The next step is for another MRI next summer.  His pulmonary valve has significant enough leakage that his right ventricle is at risk for enlarging too much and causing permanent damage so that will be evaluated after the MRI.  That information alone could cause Matt to need his next valve replacement.  Or if he becomes too sleepy and lethargic.  Otherwise his heart is good enough to avoid surgery until at least next summer.

Once again the doctor mentioned that they are beginning to use catheters in lieu of open heart surgery for valve replacements.  Matt could be a candidate for that, especially if we can get him to hit a growth spurt of two before the next replacement.  The doctor's practice has already been a part of 15 or 20 replacements with that method.  They try the catheter first and then go to open heart as a last resort.  I can't tell you the relief that is to me.  No one can ever tell me that miracles don't happen in this day and age.  The use of this procedure is proof enough to me!

Matt's Update

Matt's MRI was yesterday and everything went relatively well.

First off, we went to my folks' house for the weekend.  My brother Peter and his wife and son had come down from Utah to visit and we wanted to see them one more time before they left.  Sunday night Matt told Uncle Pete that he wanted to practice being very still for his MRI.  So Pete timed him. 

One minute of laying perfectly still. 

Two minutes of laying perfectly still. 

Finally, Matt laid perfectly still with his cousin's Boppy pillow over him as the MRI for three minutes.  



Uncle Pete helping Matt practice for the MRI.

  We left for the MRI a bit late but discovered that even with Monday morning traffic heading into Phoenix, the Phoenix Children's Hospital was only about an hour away from home.

We checked in and Matt was immediately taken back for his chest x-ray.  Then we walked across the hospital for the MRI.  We had our own private waiting area.  The room had a TV, scales, vitals machines, books, toys, and a very cold air conditioning system.  We sat and waited for our turn, but there was a little girl on the MRI machine already. 

We waited some more for our turn.  The nurse came in and took Matt's vitals (it was nice having all the machines in the room with us so we didn't have to do a bunch of walking around the hospital).  We asked her if Matt could do the MRI without anesthesia since he'd practiced.  But she and the doctor kindly explained that he's too young to stay awake.  He was fine with that and so we were too.  Then we waited some more.

Then the doctor came in to tell us that of the two machines they have, only one was working.  And that working machine had just broken down.  We kind of laughed about it since Matt's only other MRI was taken in Denver and the machine had broken down right before Matt's appointment.  We had had to reschedule for the next day because you can't keep a 2-year-old hungry for that long.  We silently prayed that the machine would start working again so we could just get this thing over with.

We waited some more.

Finally, around noon we were told that the machine was up and running and Matt would be taken back within about 30 minutes.  What seemed about 60 minutes later, Matt went back, laid on the table for the MRI and used his practice for laying still as he breathed in his "sleepy medicine" from his mask and quickly rolled his eyes back and feel asleep. 

About an hour later the doctor came back with some initial news on the results of the test.  Matt's valve leakage is moderate, but that's been the case for the last couple years.  The walls of his right ventricle are thickening due to pumping so hard to offset the leakage, but that issue is mild/moderate.  There's no blockage anywhere and that is the point that would determine immediate surgery.  Overall, Matt's check up was good.  His cardiologist is on vacation for a week or so, but the MRI doctor said there's no immediate need for us to consult with him.  In the next two weeks we'll get a call to come in a see the cardiologist and go over the official results. 

We went back to see Matt and he sleepily told us that if he'd taken one more breath in that mask that he would've fallen asleep.  Then he asked what we were doing there because he needed to go into the machine for his pictures.  He looked up and behind his hospital bed and a major look of SHOCK hit his face as he realized he was in a different room.  We had to explain to him that he was done already.  It was cute.

The best part was knowing Matt doesn't need his next surgery for a while.  But nearly as wonderful as that was feeling the peace and comfort that prayers given on our behalf brought.  I don't know that I can even explain how much easier it was to endure the appointment feeling the power of prayer.  But I do want to offer a sincere Thank You to everyone that thought of us and prayed for us over the last few weeks.

Our tradition with Matt is that after his appointments we do something with him.  Usually it's just lunch, but with the bigger and more involved appointments we've done something a little more.... like the Denver Zoo or the Museum of Natural History.  So Josh figured out a plan.

Matt got to ride to see the movie Transformers 3 in Bumblebee himself. 

It was cool!

Josh took a picture of Matt next to Bumblebee, but it didn't save, so here's what Bumblebee looks like:

Matt was excited!!


Matt inside Bumblebee (with our friend Rebekah)

 It was great to be with Matt and even greater to get good news from the doctor, despite freezing to death in our waiting room as we spent hours waiting for the MRI.

Thank you again for all your thoughts and prayers!!

Another Talk

I hate it when plans change.  If I'm planning on something, I expect to do it.

Because of that logic, I often don't tell the kids what we're doing until right before we do it.  We've had past instances when they were told what they were going to do but then things changed and we had to deal with sad kids.  I hate that.

Now that's a habit I have.  I don't tell the kids what our plans are until right before we leave to do them.  Problem is, I forgot I hadn't told the kids about Matt's MRI on Monday.  So when I casually mentioned it tonight, it brought up a long conversation between Matt and me.

Matt and I had another talk about his pulmonary atresia.  It's the second one of its kind.  Go HERE for the first time we had this talk.  Matt remembered quite a bit about what his condition is, but at first he was afraid he'd have to go directly to surgery after his MRI.  My poor baby.

We talked about his upcoming surgery.  He cried when he said he doesn't want another bovine valve.  He just wants to be "like normal."  He also told me that he's scared.  I decided to be honest and tell him that I am too.  But he has good doctors that are looking out for him and, more importantly, lots of people are praying for him, including his daddy and me.  And he can pray for himself too. 

Matt was still a bit scared and said, "Now I'm old enough to know how to die.  When you pray for me, will you pray that if I die during surgery that I die without pain?"

{Enter Tears stage left}

I honestly can't remember what was talked about after that point.  I know there were hugs and reassurances.  He went upstairs to bed with a smile on his face.  He felt better and I felt.... well.... something.  It's hard to describe.

This whole thing is weighing heavily on my heart and mind.  The hospital called this morning to pre-register him and give us an idea of what our out-of-pocket expenses will be.  The MRI alone will cost more than Matt's last surgery cost us in total.  If he needs a surgery soon, I have no idea how much that will cost us.  There's so much stress emotionally, financially, and physically. 

One of the hardest parts is knowing that I did this.  I allowed him to have the surgery that spurred the rest of the surgeries throughout his life.  Really, Josh and I sat down with the doctor and went over all of the facts carefully and concisely and agreed that the surgery was going to be the best thing for Matt.  But Mommy-guilt knows no rationality.

We'll see what happens on Monday.  Actually, it may be a week or two until we find out how the MRI goes.  He's not in an emergent state, so we'll have our regular check up with his cardiologist and talk to him about the results at that point in time.

I knew parenthood would be difficult, I just didn't know what "difficult" meant.

Looking For Support

In 12 days Matt goes in for a cardio MRI. 

This is a bit of a big deal.  I've thought about it everyday since it was scheduled a couple weeks ago.  The last time Matt had a cardio MRI, it was the final step needed for him to be approved for his valve replacement surgery.  Just the fact that we're scheduled for this tells me that we're getting much closer to the dreaded "next surgery."

I use this blog to talk about this every so often... about twice a year when his check ups with the cardiologist come due.  But I was looking for an online group or a blog or something similar where I could read others' stories and talk about my own because I'm sure I'm part of a community of mothers that I don't even know about.  The trouble is finding them.

There are lots of great groups out there.  My friend Tara has begun a blog called Kidz for parents of special needs children.  It's a wonderful group and she's become quite an advocate for special needs kids. 

But I truly don't know if Matt qualifies as "special needs".  He has very few physical limits (contact sports may be out of his future, but he doesn't seem that interested in them so that may not be a big deal) and he's growing fine and independent (he made his own quesadilla for lunch today).  It seems selfish to thrust myself into a community of parents with so much more weighing on their hearts than I do.  It reminds me of the experience in the NICU when Matt was born.  Here was this 8 lb baby surrounded by babies born as small as 2 or even 1 lb.  We didn't fit in, although we belonged there.

That's how I feel about so many of the supportive groups I've found online.  We don't fit in, but we belong somewhere. 

Maybe it's time I start my own.  Maybe a group for parents with kids with heart defects.  Maybe a group for parents that have experienced their babies having surgery. 

What do you think?

The Talk

Every Christmas (for the past two years, at least) I've tried to make a homemade gift for each kid.  Last year I made them each a photo book.  It was mostly pictures from birth to the present.  Each book had a page or two devoted to a snapshot from each birthday, Christmas and Halloween of their lives.  They each had pictures from the day they were born.  And our trip to Disneyland two years ago.  The big girls each had a page for their baptisms.  Millie's was mostly a bunch of random snapshots since her milestones are so much fewer.  And Matt had a few pages devoted to his medical history.

One page showed pictures of Matthew in the NICU.  One page showed the ultrasound pictures the doctor gave us after two of Matt's balloon-cath procedures.  And there was a page of pictures for both of Matt's surgeries.

Tonight Matt was looking at his book as I came to tuck him in.  He was looking at the page of him in the NICU and said, "This page makes me sad because I was dying."

Hello, throat.  Meet my stomach.

I explained to him that at that point, he was okay.  He was being taken care of by great nurses and they were making sure he was going to be fine.

Then we began talking about his heart and he began to cry because he was afraid he'd need another surgery when he turns 12.

Gulp.

I held his hand as I explained to him that around his birthday in June we'll be getting a better picture taken of his heart so we can know better when he'll need his next surgery.  It could be a couple more years, but it might be as soon as when he's seven. 

With a tear in my little boy's eye, he asked me, "What will they have to do?"

That's when the ton of bricks hit me.

We've never explained to Matt exactly what is wrong with him.  I've used this very blog to tell the whole world about Matt's pulmonary atresia.  But it never occurred to me to tell Matt about it.  Obviously he knows his heart had problems and that he's had surgery, but that's really all he's known.

So tonight I explained to him what was wrong.  And how it had been fixed.  And why it will need to be fixed again.  I also remembered that we have a couple of videos of the balloon-caths.  He wants to see them. 

And then I told my little son what to expect when he has surgery.  When Daddy and I will be with him, what the doctors and nurses will wear, when we'll get to see him after he wakes up. 

As scary as it may seem, the conversation actually seemed to help Matt feel better.  Now he knows what he's up against and what to expect. 

Schoolhouse Rock was right.  "Knowledge is power"!

A Lesson on the Heart

 Matt had his check up this afternoon.  You'd think I'd be a prime candidate for medical school with all the echocardiograms I've seen, all the EKGs I've seen, all the models of hearts I've seen and handled. 

But I'm not.  Not even close.

Tonight a piece of reality struck. 

Matthew will never have a "good" check up.  There's an anatomy lesson coming on, so hold on to your seat.

Above you'll see a normal heart.  The pulmonary valve sits in the uneven section just under the letters PA in the blue.  The light blue and the red indicate where the volume of blood flows and the dark blue are all the walls of the heart muscle.  As the heart pumps, blood flows from the body to the right atrium (RA) and through the the tricuspid valve to the right ventricle (RV) and up through the pulmonary valve to the pulmonary artery (PA) and out to the lungs.  The blood is oxygenated and sent back in to the heart where the left ventricle (LV) pumps the blood to the entire body.  So, the RV and the muscle surrounding it doesn't have to be too big and strong because it's final destination is the nearby lungs, where the LV needs to send blood to every extremity of the body.

 Up until this point in time, I've been worried about the condition of Matt's valve.  He has a bovine valve that was placed in his heart nearly four years ago.  Wow, has it been four years already?  This March.  Anyway, I only worried about the valve itself.  I knew with Matt's heart growing along with the rest of his body that this implanted valve would not function at 100% forever.

The truth of the matter is, Matt's heart, with or without a "new" valve, will never function at 100%.  It will never be "normal".  At first, Matt's valve was sealed shut and no blood could flow to the PA at all.  He survived because, as a fetus, he had an extra passage called the PDA which allowed oxygenated blood to flow through the heart.  Now, however, there's a different circumstance.  The valve has leakage.  It started out working okay, with some mild leakage.  But over time his heart has grown and the leakage has increased and is now moderate to severe.  Matt's valve cannot shut completely to keep blood flowing in one direction and even though blood pumps from the RV to the PA, it slips back into the RV from the PA in between pumps.  And so, if you see this picture at the left, the muscle around the RV (the dark blue) is very thick.  The heart is actually very strong and it has to compensate for the lack of "normal" flow.

Matt's heart doesn't show much of a change between today and six months ago.  But his RV is considered "large."  Not that the volume within it is large, but the muscle around it is large.  The muscle is pumping so much to try to get the blood to the lungs that it can cause a blockage in the path to the PA.  Or, the RA (which is also enlarged) could end up growing too big and causing blood to pool and creating clots. 

And so I've suddenly realized there's way more to it than just if the valve works.  I've learned what it is the doctors are doing.  As Josh put it, it's a numbers game.  Because of the extreme risk to put a person on a bypass machine as the surgeon cuts open his ribs and physically touches his heart, they risk the anatomy of the heart.  Yes, there's a risk with having a leaking valve.  Yes, there is a risk with having over-sized muscle walls in the heart.  Yes, there is the possibility of clots or loss of oxygen.  But can your body stand to continue these risks a little bit longer to avoid open heart surgery? 

Now there is the possibility when he stops growing that his valve will work with mild leakage for a while longer.  Possibly.  But then it becomes the game again of not replacing the thing that eventually causes so much damage (the failing valve) that it's life threatening because the alternative is life threatening-er. 

No, my son does not have an obvious defect.  His condition would even surprise most people that meet him but don't know his story.  But I can't ignore it.  I can't forget it.  I can't let it go without thinking about it every day.

In six months we'll go have an MRI to try to get a better idea of how that RV is doing.  Then we'll go a week later to sit down with the doc to discuss the results of the MRI and do another echo.  Then we will see if he has a better idea of when we want to replace the valve again. 

And so we continue to wait.

The Heart of the Matt-er

Tomorrow Matt goes to the pediatric cardiologist for his semi-annual check up.

Here's hoping I can sleep tonight.

We're not expecting anything out of the ordinary at Matt's appointment.  Simply put, Matt has pulmonary atresia that has required his pulmonary valve to be replaced and additional replacements will occur every 5 to 15 years throughout his life.  At the last check up we found that Matt's valve leaks a bit, but unless it begins to block the flow of blood, we probably still have a couple years left with his current valve.

I think what I dread the most is the reality of the matter.  Every time we visit the cardiologist we are another six months closer to Matt's next surgery.  This isn't the most optimistic way to look at these appointments.

I SHOULD think, "Oh, another check up, another six months we probably don't have to worry."

I SHOULD think, "We just spent another six months without having to take him in for surgery, phew."

I SHOULD think, "Yay, Matt gets a new sticker."

But I don't.  I've learned to hope for the best, but prepare myself for the worst.  I'm generally a positive person, but we've hit snags before.  Mostly, it was the day we discovered Matt needed the surgery that led to all of this repeat-surgery stuff.  We had expected a clean bill of health and annual check ups for a couple of years leading to check ups every two years or so.  But instead we were hit with the news that our son needed a different surgery that would require replacements throughout his life. 

Because of this experience, I'm careful.  I don't expect miracles, but I also pray that we'll have more time.  It was an eye-opener last June when we heard the doctor tell us that we had about two years left with this valve.  My mom had to remind me that he'd already had it for three, so he was on the expected course.  Still, it's not easy.

So tomorrow we plan to take our son in for an appointment, see where he is compared to six months ago, and possibly get a new idea of how long before our next date with the surgeon.  Here's hoping for a productive check up.

#4 I'm Thankful For......

Today I'm thankful for Florence Nightingale.

1.  My husband is a nurse.  It's his calling in life.  He's good at it.  He enjoys it.  He thrives on it.  If he has to spend 40 hours a week away from me, nursing is where he should be.

2.  Florence wasn't the pioneer of pharmacology, but she's a nice segue to it.  I'm thankful for medications.  Specifically Children's Tylenol.  I've given doses to three different children today.  And I need to stock up because I have a feeling that I'll need to give a few more doses before the week is over.

3.  And moving along with the medical theme, I'm thankful for modern medicine.  Today I got a postcard reminding me to schedule Matt's next cardio appointment.  Where would he be without incredible doctors, nurses, surgeons, medications, ultrasounds, 2x2 gauze, and pleasant office staff that greet us at the office or on the phone?  Well, we know where he'd be.  And maybe me too.  No one can ever convince me that modern medicine is not a modern day miracle. 

So thank you, Florence Nightingale.  You were an incredible woman and your life has truly affected mine.

I Got Checked Out....

....but not in a good way.

I should be cleaning my house, washing laundry and doing the dishes, but evidently I've dubbed tonight "Catch Up Night." So, enjoy the next several posts and pictures and then be sure to post on Bloggest Loser.

So, Monday I had a dentist appointment. For whatever reason, I found it imperative to get every medical thing caught up this summer. Matt had his heart check up, we all got our eyes checked, and now we've all been to the dentist.

I'm not too proud to admit that we've been very slothful about getting to the dentist. In fact, Matt had never been before today. Josh and I have both had tooth pain over the last few years, but we didn't have good enough insurance to justify going. Now we do, so we did.

Unfortunately, I wasn't the easiest patient to attend to. Here are how some of my conversation with the dentist's assistant went:

Assistant: When was your last dental check up?
Me: I don't know. I think it was sometime in this century.

Assistant: Do you have any tooth pain?
Me: Yeah, for about five years I haven't been able to chew on the left side of my mouth. I think there might be an issue there.

Me: (20 minutes after the first question) Oh, I remember my last check up. It was 2001. {I remembered this because Emma was just a few months old and the lady at the front desk told me I was pregnant and wouldn't do x-rays. I laughed and told her I better not be because my baby was just a few months old..... I was pregnant. I found out about a month or two later when Emma was 6 months old and I was 3 months pregnant.}

After the appointment:

Assistant: You have some work that needs to be done. We can combine the work and get you done sooner.
Me: Yes, let's do it all in one appointment.
Assistant: You'll have to do it in a minimum of two appointments.
Me: Why?
Assistant: Because you need work done on the left and right sides of your mouth. The doctor can't numb your whole mouth at the same time.
Me: Oh. I have that much work to do? I'm awesome.

One of the office girls offered another a piece of candy. She didn't want it, but asked if I wanted anything. I told her, "No, thank you. Evidently, I have a mouthful of decay, so I shouldn't eat sugar."

So, today I got the worst of it done. Tomorrow I'll do the rest of it. Oh boy. I can't wait. This had better be the worst visit we ever have. Luckily, our insurance covers check ups 100%, so we have no excuses now.

Nephew Number 8

Today my baby brother Peter and his wife Genica welcomed Brayden Michael Williams into the world. And if you pay attention to initials, you will discover that Brayden's are BMW. That is not a coincidence. Some people's brothers are weird. But, he was born today (February 25) at 7 lbs 8 oz and 19 1/2".

I don't have any pictures of the new bundle of joy yet, but can I just say...

I'm So Happy!!!

I love my brother and I love my SIL. They are such good people and will make incredible parents. They've been given an incredible gift with this little boy. They also have some major challenges ahead of them. Brayden has Gastroschisis. That's where some of his digestive system grew outside of his abdomen. Until he was born no one knew to what degree he had it. From what I've heard, it's a bit more severe than we all hoped, but with a surgery or two (hopefully) he'll be put together and will be able to come home within about six weeks after his final surgery.

If you have any extra prayers laying around, I'm sure they would be happy to accept them. Both Pete and Genica are enrolled in school this semester. Genica has online classes, so she will be able to complete them as she stays in Salt Lake City with Brayden. Pete, however, will have to go back up to Logan to finish his classes at Utah State University. He'll have to be away from his wife and son during the week and only see them on the weekends. My heart is heavy for them, mostly because I have an inkling of what lays ahead of them: hospital living with a baby in the NICU is NO FUN! And being separated because life doesn't stop is difficult. And living with the guilt of "We live in a town not suited for my child's health problems so I can finish my degree" is extremely rough.

Luckily, both sets of grandparents are there to make immediate life easier for Pete and Genica. But if you happen to think of them, please say a prayer for them. The next few months are going to be challenging, to say the least.

I love you, Peter, Genica, and Brayden!! Wish I was there to hold all of you!

I {Heart} Matt

Today Matt had an appointment with our new pediatric cardiologist. He's been overdue for a check up, but with moving (three times, if you count when Josh came down here and our insurance changed and we had no access to AZ docs in MT) and all of the other joys of life, his appointment got postponed. But he went today.

We like our new doctor. He's an older gentleman. If we went to junior high together, then you might remember Mr Willerton. He looks kind of like him, but with a mustache. And not annoying. He's actually very quiet and seemed to be very thorough with Matt's check up. I was glad for that. I hate feeling rushed with the doc, especially when it's an important check up like this.

We went over Matt's history with him: born with Pulmonary Atresia, had 4 balloon caths, surgery to expand the size of his pulmonary valve in October 2005, and surgery to replace his pulmonary valve with a bovine valve in March 2007. Matt has been very preoccupied about his heart lately. It seems like everyday he brings it up. He says his heart hurts every so often and the doctor let us know that it's a good chance that his scar site hurts because as he grows the skin at his scar pulls a bit and can be uncomfortable. But sometimes Matt uses descriptors that worry me a bit.

Yesterday, on our way to the library, Matt said his heart "stings". I asked if it stings when he breathes and he said yes. I told him to sit still and we'd see how he felt in a minute. He seemed fine and I didn't think about it again until we were on our way home. I asked if his heart still stings or had the feeling passed. He said, "The feeling has passed. But it does sting when I look at something orange. OH! I just looked at something orange and it's stinging again." So, I don't know how seriously to take all of his comments.

Because we didn't have the medical records to compare today's test results to, we don't really have a definitive idea of how he's doing. Matt's pulmonary valve leaks. That means that blood pumps through it, but some swishes back through (like back wash). This valve has mildly leaked since it was implanted in 2007. And some people have a mild leak in their original valves and never really know it. So, a mild leak isn't a big deal. Today, however, the doc said he'd classify Matt's leak as Moderate. I'm not really sure what this means. First, we need Matt's records to compare doctors' notes and see if our new doctor's idea of a moderate leak is the same as our old doc's idea of a mild leak or if Matt's valve is losing some of its potency. Then, we'll need to find out how long we can go before replacing the old valve. Do we wait until there is a severe leak? Do we catch it before it's a higher-moderate leak? I don't know.

All I know is, I'm a mother with a son who faces heart surgery no matter what. Every check up is a tug at my own heart. Will today be the day I have to confirm my son's worst fears---that someone has to cut him open again? It scares me to death. He's so brave, though. He followed all of the directions from the nurse and doctor today, even though he thought they would have to cut him open right then and there at the appointment. It wasn't until they were putting the stickers on him to monitor his heart rate and he got a little tense that I realized he was waiting for them to cut him. But he was obedient and did what he was asked by complete strangers. He had faith in them that they would help him, but he was scared too.

When you grow up in a family that is relatively healthy, with very few accidents that happened and no major illnesses, it's hard not to resent having health issues in your own family. Sometimes I question, "Why do we have to deal with this? Why is it my son that has to face these challenges?" I don't have the answer for that. But I do know that I will be there for him and help him however I can. I'll happily sleep on his hospital bed with him as he recovers (I'm 40 lbs lighter, so I'll fit better this time). I'll drive him all the way to the middle of Scottsdale for him to see his doctor. And the wonderful thing is that Josh will do it too. He sacrificed a bunch of sleep today to go with us. He worked last night and is working again tonight, but he really wanted to be there with Matt at his first appointment with a new doctor.

I discovered today that I really hate being ignorant. As we watched the echo cardiogram take place, I couldn't tell what exactly we were looking at. It looked like most of his others, but I don't know what a healthy heart looks like, so I didn't know if there were any changes. And I always hate interrupting the doctor in the middle of it because I don't want him to miss something or lose his train of thought because I bugged him. I'm very tempted to look at learning how to be an echo cardiogram tech. I could learn what I need to for Matt and work in a doctor's office, away from the blood and gore. Maybe I'll check that out, after the kids are a bit bigger of course.

So, the bottom line is, Matt had an appointment, but we don't know how it went. He'll go back in June to make sure the leak isn't getting any worse. Keep us in your prayers.

Extraordinary Measures

Anyone seen the previews for this one? At first it caught my attention because it's a Harrison Ford movie. Love him. Then I noticed Brendan Fraser. Love him more. Then I saw Keri Russell. Hello? How much better can this movie get? Then I saw what it was about.

It seems that the movie is about a man who does everything in his power to find the cure for his two children who have the fatal Pompe Disease. I don't know much more about it, but there's a little blurb about the real man on the movie's website. Click Here to check it out. After seeing that, I really want to go see this movie when it comes to theaters in a few weeks.

This may be pulling extra hard at my heart strings because of Matt. Matt is getting to the age where he understands his heart condition much better. He knows he's had surgery and that he'll need it again. This makes the most minor trip to the doctor extra scary for him. He's also told me a lot lately (including today) that it feels weird to have Aunt Lori's blood and strangers' blood in his body. He did think it was really cool when I told him that I have strangers' blood in my body too.

He's just really beginning to understand and it's a very nerve-wracking transition. We have to take him to a new cardiologist here and I'm hoping he will not be too scared. Last we knew, his heart is doing just fine and we shouldn't have to worry about his next surgery for a few years. But I can't help but remember his depression after his last surgery, which was March 2007. He was not quite three and we had to actively encourage him to drink, eat and move around. The toll on his spirit was obvious--you could see it in his eyes. Of course I just wanted to hold him and protect him, but I had to get him to be uncomfortable and get out of bed. The thing that finally worked was a little car he could drive through the halls of the pediatric ward.

He also got to drink with straws. He liked that.

So, I'm interested in watching this movie. You do what you can to help your children. Even if it kills you and breaks your heart. I spent most of the week in the hospital with Matt laying on his bed with him. Our hotel room was 15 to 30 minutes away (depending on traffic in downtown Denver) and that felt like a million miles when I had to be away from him. I love Matt. I'm so grateful that his heart has been so healthy so far. I wish with all my might that I'll never have to see the look of pain and panic in his eyes ever again, but I know it's not only possible but probable.

In thinking about it, it's Matt who has taken Extraordinary Measures. At the age of 5 he has already begun facing the demons of the depression that falls on a person whose heart has literally been in someone else's hands. He's a special boy. A much stronger person than he may ever realize. He's got his Daddy's spirit. He'll grow to be a good man like Josh.

They both amaze me. And I love them.

'Fessin' and Stuff

'Fess Up Friday

I exercised. I tried to eat right. I had a few days that I didn't. I lost a pound or two. I wish I could drop lots of weight immediately. It won't happen, so I'll just keeping pouting about that and keep trying. *Pout*

Zoolights

Last night we went to the Zoolights at the Phoenix Zoo. It was really cool. No exhibits were open, it was really dark, there were lots of people and we had to wait in some really long lines. But, it was still kind of cool to be there and it was even cooler later in the evening when most of the people were gone. It was almost like we had the whole park to ourselves. I liked that part the best.

Doctor's Office

Matt got his cast off his arm Friday morning. Everything is healing well, he just needs to rebuild the strength in his wrist. But his doctor's office is one of the worst I've ever been to. It's got a very crowded waiting room (with or without people) and wait we do. For a long time. Now, my question is, why is it that we are expected to be on time or even early for an appointment and we sit ignored for 40 minutes, but if we were to have shown up 40 minutes late and bypassed the waiting period we would've been denied our appointment? And I swear, if some medical person tells me some practical reason why this is, I promise you that I will go sockless and literally run around in my shoes all day long and then come to your medical office, take off my shoes, and rub my smelly, sweaty feet on your carpet.

I may need to go to bed.