So That's a Feeding Tube!

This is a photo of Eli when he turned one.  It's a good shot of his scars and his MicKey button.  Photo courtesy of Reflections by Mindy.

 
People are always curious about his feeding tube.  Some of the most popular questions are about how it works, what exactly do we use it for, how often we change it, does it hurt him, and how long will he have it?  This post is an explanation of why Eli has the tube, how it works, and answers to the previous questions.  So here goes!

Does it hurt him?
No, the tube doesn't hurt him.  It was a surgery to put it in and, yes, he was in pain postoperatively, but now it's just part of him.  He has been playing with it more these days and I know he's going to pull it out on his own sometime, but for now he just touches it.  I don't mind his curiosity, it's part of his body and he needs to be comfortable with it. 

This was the first picture taken of him after having surgery for his feeding tube placement.  If you follow the green wire it runs into the disc that was part of the feeding tube.  It's difficult to see but there's a white tube coming off that disc.  The disc & the tube make up the outer portion of his newly placed feeding tube.  The wires were to monitor his heart rate & rhythm and respirations. 02/14/2011

Why does he have it?
One of the things that led us to seek help prior to his diagnosis was that he wasn't nursing as much as he had been.  We are a family who likes to eat so we knew something was wrong!  After his first heart surgery, the only thing he would allow in his mouth was a pacifier...and only a certain brand at that.  The fact is Eli needed nutrition, he wasn't eating and we had to have a way to get milk into our baby.  Initially, he had an NG (N = nasal G= gastro, meaning a tube inserted into his nose and fed down into his stomach).  It had to be taped to his face, immediately made him look different, had to be changed weekly or more often, had to be checked for proper placement prior to each use which was multiple times day and night, and could easily be dislodged or pulled out by Eli or Zachary (Z was only 3 when Eli had the NG).  Then he started having bloody stools.  It was about two weeks after we got home from his first heart surgery and we didn't know if he had GI problems or if we had scratched him when we changed the tube.  Further testing revealed he had a milk protein intolerance.  While he was in the hospital for that, our cardiologist made a push to get the feeding tube surgically placed.  Bryan and I were on the fence about the permanent need but agreed that if we were going to do it, this was the time.  The GI doctor wanted to do an EGD (a tube down the throat into the stomach to allow the doctor to see the tissues and take samples for biopsy) and colonoscopy (a tube up the rectum and through the intestines for the same reason)  and Eli would need to be put out for those.  Since he was going to be under anyway it was the perfect time to place the feeding tube.  Our decision was made and we have not had one regret since. 


How long will he have it?
I don't know.  Some parents whose little ones have feeding tubes are very anxious to get them removed and I understand that.  It's not a natural part of your baby.  It's a visual reminder that something is wrong with your perfect child.  Bryan and I weren't thrilled about getting it in the first place, but once we did we quickly realized how much better it is for Eli.  We are not in any hurry to get rid of it.  He had stopped requiring tube feedings for several months, but is now needing them again.  We're so glad we have that access.  As long as the hole stays healthy and the surrounding skin doesn't have any breakdown, we're much more content to have the button and not use it a lot than to be rid of it and need it again. 

How did they get it in there to begin with?
It was a surgery and it took two doctors.  One was our pediatric GI (gastrointestinal) Dr. Maisel and the other was a pediatric general surgeon Dr. Kokoska.  Dr. Maisel had the scope in Eli's stomach for the EGD and found the spot for the G-tube from the inside.  By the way, at this point it was called a G-tube meaning gastric tube (gastric = stomach).  Dr. Kokoska found Dr. Maisel's spot from the outside and made the incision where Dr. Maisel wanted it.  It took two of them because the internal organs in babies that small are very close together and they didn't want to inadvertently puncture other organs.  Remember, Eli was under 10lbs at this point.  At first it was a long tube about 18 inches in length that led to a disc on the outer part of his belly.  The pictures below were taken throughout the procedure and show what it looked like on the inside.  He kept this tube for almost two months.  Have you ever had your ears pierced and had to keep the original piercing studs in for a few weeks before you were allowed to change them?  This is the same concept.  Once the hole had time to form a tract, he was put under anesthetic once again so that tube could be removed and his new button put in place.  It's called a MicKey button and it's what you'll see in later pictures.

Photos given to us by the doctors who placed his G-tube.  Image 2 notes point out his liver and his stomach.  Image 4 notes say "stomach" and "pulling PEG tube".  Doesn't he have the cutest little internal organs ever?!?!

How often do we change it?
Monthly or more often if necessary.

What necessitates a change?
 -if the tube is pulled out
 -if the tube is blocked and we can't get anything to flow through
 -if it's getting visibly dirty/gunky.

Who changes it?  Where is it changed?
We change it.  We do it at home, usually on the changing table in his room.  We carry an extra kit in our van in case we have to while we're out sometime.  Bryan and I have always done it together but one person could do it alone.  It's easier with two because one can occupy Eli while the other gets it done.  The whole process takes less than 5 minutes.  Some people have asked if we're allowed to change it because I'm a nurse while other families would have their doctor do it or go to the hospital.  No, I'm not Eli's nurse, I'm his mommy.  We were taught, as his parents, to do this regardless of our occupations.  

Shouldn't this be done in a sterile environment?
The initial surgery was done in a sterile operating room, but since then it's been what's called a "clean" procedure.  When it was converted from the larger tube they placed during surgery to his current MicKey style button, that was in a procedure room, not a sterile OR.  Each of his new kits is in sterile packaging.  We wash our hands and keep the whole process as clean as possible by laying him on a clean blanket, only touching what we have to, and keeping his hands away.  Stomach contents are not sterile like other organs.  He probably gets more germs from what he puts into his mouth than from us changing his button. 

Here's what you've all been waiting for.  Here's how we change it and use his MicKey button. 

This is the kit for his new MicKey button. 

We use good ole KY jelly (or the generic!) on the stem of the button to make insertion easier for him.  So if you see me buying it by the case at WalMart, that's why.  Yeah, that's why. 

This is the new button.  I'm holding it upside down so you can see the stem that will be inserted into the hole in his belly.  The bottom part is actually the button that stays on the outside of his body.  There's a "balloon" that goes around the stem and gets inflated with water.  That's how it stays anchored inside his belly.  We have to test the balloon prior to inserting the button to make sure it's intact. 

Here's the balloon after I filled it with 6ml of water (slightly over a teaspoon).  It doesn't look like it here, but this balloon only goes around the stem, not over the end of it.  The end is open so that his medicines and formula can flow through.  The balloon is like an inner tube around the stem.  The narrow area between the inflated balloon and the bottom of the button is 1 centimeter in length.  That's the part that goes along the tract that was formed between the outside and inside of Eli's belly.  When we reorder his buttons from the pharmacy we specify a 14 French (has to do with the diameter of the tube) 1 cm.  As he grows, the diameter shouldn't change but the depth probably will.

Here's a different syringe attached to the button that's currently in place.  We have to deflate this to take it out.  It could get pulled out with the balloon inflated but that would hurt and possibly cause some tearing around his hole.  It could happen, but so far he hasn't pulled it out on his own.  We hope he doesn't, but I bet if he does it once he won't do it again.  Once we pull the water out of the balloon the whole button just lifts out. 

A view of the hole after his button is removed.  We clean it every day and apply some ointment around it to help keep the skin in good shape, but when we change his button it's a good opportunity to really clean it.  We just have to be fast because this is a direct opening into his stomach.  Yes, gravity is a factor here.  If he rolls to his left side very much we may get some stomach contents to pour out.  Don't worry, I didn't take any pictures of that.  Incidentally we make sure to keep food & drink away from him for about an hour before we do this!  Let's just say we've learned the hard way :)

Another view of his button hole.

The new button is in place, the balloon filled, and the syringe removed.  The new button stem just slides into the hole, we inject the water to fill the balloon and remove the syringe.  He's done!

Here's the tube we use to access his button.  The end of the tube has a little piece of plastic that sticks up.  That aligns with the notched area on the face of his button.

The black line on the access tube shows where the notch is.  Line that up with the line on the button indicating the place for the notch and....

...turn clockwise just shy of a full turn.  That locks the tube into place and makes it "become one" with the button.  To remove it, simply reverse the process by turning the tube counterclockwise until the black lines line up.  Then just take out the tube and replace the doo-hickey rubber piece over the button opening so that other stuff doesn't get in there.  The button has a one-way valve inside so things shouldn't leak out once they're in, but if it's been used for a while we may get some occasional leakage (another indicator that it's time to change the button).

This is the tube we took out.  As you can see, it gets dirty, gross and gunky. 

It's very hard to see, but there's a small pinpoint opening at the bottom of this stem.  That's what all his meds, formula and water pass through into his stomach.  Even if we aren't using his tube for medicines or feedings we still have to flush it with water two times a day just to make sure that tiny opening doesn't get clogged. 

A view of the whole tube we use to give him feedings and medicine.  A close up of the white part on the right is shown in pictures above.  The left part is the head of the tube which has two ports.  In the middle is a clamp.  In this picture the clamp is open.

The larger port on top is for feedings and the smaller one coming off the side is for his medicines.  They feed into the tube the same way, they're just different sizes for different syringes to attach. In the background you see a syringe that is full of water.  The syringes that fit into his feeding tube are called a "slip-tip."  Some people assume we mean a syringe that could also hold a needle (like for a shot) but these just have a little tip on the end that fits into the port.

The slip-tip syringe fitted into the medicine port and filling the tube.  We prime the tube with water prior to attaching it to his button for any feeding or medicine.  Otherwise we'd be pushing a bunch of air into his belly and make him burpy or even sick.  After the medicine or formula is in we flush the tube with water before detaching it from his button. 

Here's his nightly line up:  Prilosec (to help decrease stomach acid), a daily vitamin (tablet is crushed up & mixed with water because he won't eat them yet), Captopril (helps his heart function), and the water flush.  The clamp on the tube is closed to hold in the water. 

Eli has started helping with his medicines.  He'll put his finger on the plunger and help us push it in.  He's half asleep in this photo.  You can see how it's hooked up to his button and the medicine syringe is attached.

Some people want to know how we keep it straight.  Most of the time it's pretty easy because his meds are pretty consistent.  Two of them he takes twice a day, his vitamin is everyday, and he gets half a baby aspirin every other day.  We do that one on even dates only 2nd, 4th, 6th, and so on).  If a month has 31 days then he will he will have his aspirin the 30th, miss the 31st, miss the 1st, then have it again on the 2nd.  Otherwise it gets too confusing!  I created an Excel spreadsheet with his meds, their purpose, the amount & dosage, how many times a day he gets each one, a list of "as needed" meds & their dosages (Tylenol, Dimetapp, etc), and a place to mark Zachary's daily vitamins.  I printed that and cut it to fit into an 8x10 frame.  We use dry erase markers each day for the date and times we give him the meds.  There's room to add additional info we have for the day.  For example, he's on an antibiotic right now so it's written to the side with its times given.

A look at our daily board

The first picture I took of our daily board being held by our lovely model.

That's all there is to it.  When we were still in talks about going the G-tube route it seemed like it would be a lot of work and a big deal, but it isn't.  We just made it part of our routine and hardly even think about it.  It's so convenient to be able to give Eli his medicines and feedings.  We don't have to wake him if something is due when he's sleeping.  We don't have to fight to get him to take multiple meds multiple times a day.  He takes some by mouth, but when he initiates it.  We figure he's going to be taking medicine for the rest of his life so why make it a negative experience for him?  Using the tube became so normal to us that I messed up when Zachary was on an antibiotic for the first time.  He was 3 1/2 and had been sick enough to require an antibiotic.  It was liquid of course and supposed to be given every 8 hours.  I gave him his first dose as soon as we got it from the pharmacy which was about 4pm.  Next dose at midnight, right?  Well, midnight rolls around and I wake to my alarm ringing, go to the kitchen, measure it out and go to his bedside.  Only after getting him to roll onto his back in his sleep did I realize he didn't have a feeding tube to put it through!!!  I felt soooo stupid.  It wasn't a momentary lapse of intelligence, it was an 8 hour lapse during which time I just assumed the act of giving Zachary medicine would be as easy as doing it for Eli.  I didn't wake him but we just changed our schedule to be more realistic for him the next day. 

I hope this answers some questions for anyone who has wondered about this.  Again, the invitation is out there for you to ask anything you've wondered about Eli's condition, how we handle it, etc. Use the comment section on this blog, use Facebook, or email me at jessveale@yahoo.com.  Thanks for reading and remember to cherish Every Little Beat...

Update and an Invitation

Happy New Year!  We had a quiet holiday.  We're not big partiers anyway but were just glad to all be together.  Both boys had colds over Christmas.  Zachary got over his easily but Eli's lingered throughout the new year.  In fact he developed an ugly barky cough and we had to get him into the doctor to make sure he wasn't developing a respiratory infection.  Fortunately, Dr. Amy discovered his throat was red and covered in white patches.  We think his lungs are clear.  He's tricky because he's had pneumonia before that we couldn't hear but just happened to find on x-ray.  He's on an antibiotic now and hopefully is better in a few days. 

The new year always bring about excitement for what's to come.  I don't know if I'm as excited for 2013 as I was for 2012.  We were definitely ready for 2011 to end since it was such a trying year for us:  Eli was unexpectedly diagnosed, had his first (and hopefully ONLY) helicopter ride, two heart surgeries, two feeding tube surgeries, a heart cath, two other hospitalizations (pneumonia and stomach virus), two EGDs, a colonoscopy, multiple echos, blood draws, therapy appointments, etc.  We were ready for that year to end so we could start as fresh as we could.  2012 was good for us.  It was calm.  We didn't have any major unexpected situations.  As we start 2013 I feel some apprehension for the upcoming year.  We know Eli will have his third open heart surgery months before he sees his third birthday.  We're smarter about our situation now and have done more research about it.  The good side of that is we won't have as many surprises.  The flip side is with the research we hear more of the negative outcomes.  Of course we're hoping and expecting the best, but we wouldn't be normal if we didn't admit to some fears. 

Something I've wanted to do with this blog is to get more feedback from those of you reading along.  Your comments mean so much to us.  Even through 2012 when we didn't have any major issues, it was so nice to feel your support and concern.  Thank you to everyone who takes the time to read this.  Along those lines, I've wondered if there's anything you'd like me to write about?  Do you have any questions for us?  Feel free to ask anything, I'm pretty hard to offend!  To get your question or comment to us use the comment section below, use Facebook, or email me at jessveale@yahoo.com  Please let us know what you'd like to read or have just been curious about with Eli or any of us.  I'm already working on a post about Eli's feeding tube because that is something most people don't understand. 

I look forward to your questions and comments.  Again, thanks for reading and we hope each of you have a blessed 2013!!!

MERRY CHRISTMAS!

Merry Christmas!  Hope each of you had a wonderful holiday.  The boys definitely made our lots of fun, just like they do for everything!  Our Christmas lasted for four days.  We decided not to rush things so we didn't open our gifts until the 26th.  It was really nice to do it that way because the Blizzard of '12 hit about 4am so we had a white Christmas!!!

When I sent our Christmas cards this year I included business cards we had printed for free with VistaPrint.  The business cards were advertising this blog in an effort to increase our reader base.  The ultimate goal is to spread awareness about CHD using whatever means we can utilize.  If you're reading this because of one of those cards, thank you.  Please keep coming back and, more importantly, help us spread awareness about Congenital Heart Defects and its prevalence.  I'm not going to go into any statistics or facts right now because this post is about our wonderful Christmas, but I promise I will be posting more in the future about the need for more awareness and research.  Thank you for visiting and please become a follower so you can receive notifications when we publish a new post.

***FYI:  Someone recently told me they receive an email notification of each new blog post, but can only view the text, not the pictures.  As far as I can tell, if you want to view the photos you have to actually be on our blog, not reading through your email.  Open a new tab and type in www.thevealefamily.blogspot.com and you should be able to view any post you want with the pictures included in that post.  Thanks again!

Here's a whole lotta pictures from our Christmas festivities.  The pictures and their captions tell our story.  Enjoy!

Wednesday 12/19/12, Zachary's Preschool Program:

The four of us at Zachary's preschool program.  The kids did a wonderful job entertaining us.  Zachary's favorite parts were playing air guitar while they sang "Rockin' Around the Christmas Tree" and eating the yummy cookies after the program. 

Zachary waving when he found us in the crowd (and let me tell you, it was a large crowd!)

Zachary with his teachers, Ms Carrie and Ms Angie. 

My Aunt Shirley was there to watch her great granddaughters who are also in Zachary's class.  She borrowed Zachary's Rudolph antlers and even let me get this picture.  Everyone was feeling festive!

I took a turn with the Rudolph antlers, but Eli didn't know what to think!

Sunday 12/23/12, Christmas with Jessica's family:

We started our Christmas celebrations on Sunday the 23rd.  The four of us, my mom, my sister, her boyfriend and his son came to our house for pizza and our gift exchange.  Here my mom is opening a gift from Josh who had her name.  He claims he knitted the sweater inside the box. 

Eli and Zachary were thrilled that Aaron was at their house.  They don't get to see each other very often and Aaron was a good sport about looking at everything they each had to show him.  Eli said Aaron's name about 7 times/ minute.  Eli was fighting a cold which made his drooling even more pronounced as evidenced in this picture.

Ashley had Bryan's name and got him a Tyler Zeller Cavaliers shirt.

I had my sister's name and got her a new crock pot.  She's exaggerating her excitement a little in this photo.

Aaron is a huge San Antonio Spurs fan and his room in Ashley & Josh's new house is a Spurs theme.  Bryan had Aaron's name and we made him a body pillow for his bed.  We've never attempted a craft like that before and were very pleased with the results.  We're pretty sure Aaron liked it too.

The letter to Santa Zachary wrote at school said he wanted "some paints, paint brushes and stencils."  We didn't know what he meant by stencils.  Ashley found out Santa had other things for Zachary so she got the paint supplies for him.  Josh kindly put the easel together for us (with a lot of help from the boys).  When Z unwrapped the box containing the easel he yelled "My stencil!!!"  Mystery solved!

Zachary and Aaron hanging out.

Zachary preparing for Santa's visit.  He came to our house on the 24th because I had to work Christmas Eve night.  I wasn't scheduled to be off until 7:30am Christmas Day, but as a nurse you're never guaranteed to be out on time so we decided to ask Santa to come a day early.  He's such a sweet guy and immediately agreed to help us out. The sack Zachary is holding was made by Bryan's Aunt Donna.  She made two for us, at Santa's request.  Our boys are very lucky and have a lot of toys.  Santa started a new tradition this year by asking them to put some of their toys they don't play with anymore into these sacks and leave them with his milk and cookies.  Santa emptied out the sacks and took those toys to children who didn't have enough to play with, leaving the sacks for next Christmas.  It worked well and Zachary has already found more to put in his sack for next year!

Monday 12/24/12, Santa's Visit:

We left our stockings on the table with the sacks and milk and cookies.  Zachary insists we leave chocolate milk for Santa every year.  Santa left a letter thanking them for the snack and especially for helping him out by giving him some of their gently used toys. 

Our tree with Santa's gifts.  From left to right:  a bean bag chair (for Eli), an Imaginext Dinosaur and a metal detector (both for Zachary) and a wall of cardboard bricks (for Eli).  I specified which boy each gift was meant for, but in reality they both play with everything!

In our garage checking out the final gift from Santa.....a 7 1/2 foot air hockey table!!!!  Santa said it was too big & heavy for him to bring in and we don't have a good spot cleared out for it yet.  Guess what I'll be doing in the next couple weeks?!?!?  We can't wait to get it put together :)

Eating cinnamon rolls the morning Santa came.  He was making silly faces with the icing smeared on his lips.

 

Stopping to say "Cheeeeeessssseeeeee!" while playing with his new goodies!

Zachary was so excited to use his stencil (easel) and paint a jungle picture.  He's a pretty good artist.  I don't have a picture yet of the finished painting but it has a lion and a cheetah in it.  He says he wants to add a gorilla.

Tuesday 12/25/12, Christmas with Bryan's family:

Zachary pointed out that our nativity scene was missing a star for the Wise men to follow.  I told him I didn't have one and he immediately set out to fix that!  I like our new addition to the scene.

Christmas Day!  This is a photo of Bryan's sisters & cousins.  Front row:  Ashley (sister), Alexa (cousin) holding Zachary, Tammy (cousin), and Kendra (sister).  Back row:  Bryan holding Eli, Amy (cousin & Alexa's mom) and Cara (sister) holding her daughter Alyssa (niece).  Yes, Bryan is the only male grandchild, not only on the Rayman side, but also the Veale side.  I am the only female "outsider" to come into this family in 40 years!  The next will be when Zachary or Eli marries (another 40 years!)

Alyssa was given a rocking chair but there was a bit of a struggle over it at times!

Some of the people & presents at Bryan's parents' house.  It was a crazy mess of paper, gifts and laughter!

A Dinosaur Train blanket made for Zachary by cousin Amy.  Eli received a Mickey Mouse one. 

Eli decided to skip out of the party for a few minutes.  When I found him he was in Alyssa's carrier playing with her stuffed animals. 

The boys were given a copy of Madagascar 3, complete with crazy wig.

Just a super cute picture of my first born!

This is Granny, Bryan's grandma.  It was surprising she even put the wig on, but downright amazing that she let us photograph her....and with a smile!

Sweet little Alyssa was one of the best gifts for our family in 2012.

Wednesday 12/26/12, Our Christmas:

 

Opening a shared gift.  It's so cute how well they work together

Zachary took this picture of us.  We're holding the package he made for us at preschool.  The package was decorated with a beaded candy cane and had a card with his school photo and a sweet message.  The gift was a book about Christmas.  "What Christmas sounds like, what Christmas smells like, what Christmas tastes like, what Christmas looks like, and what Christmas is really about."  Very sweet gift.  Thank you to his preschool teachers for organizing such great surprises for the kids to give their parents.

Gift opening time out to read one of his new books.

Another Imaginext dinosaur!!!!  He discovered them before Christmas last year and received 5 or 6 then.  New ones came out this year and he got 3 more.  He plays with them multiple times a week and takes pretty good care of them because they're so special to him.

Reading to Eli from his personalized book about his adventures with Sesame Street characters.

Zachary was very excited to open the walkie-talkies he'd seen in the Toys R Us magazine.  He & Bryan had a lot of fun with those in the evening.

Albert is the biggest kid when it comes to presents.  He loves to open his and it's quite funny to watch.  I'll have to find a video and post it sometime.  You just have to see it to believe it.

My three guys, part of our Christmas mess, and some awesome smiles.

Eli loves to "daw!" so we got him a doodle pad. 

Eli's very own backpack!  Or "baa-paa" as he says.  He loves Zachary's backpack so when we saw this Elmo one that was just his size we knew we had to get it for him.  It has different snaps, ties, zippers, buttons, etc to help him learn how to do those things.  For now he just likes putting things in it and wearing it around the living room.

This is me & Albert by our pine trees in our backyard.  Albert played in the snow for a while but being a short-haired indoor dog he doesn't last a long time in the snow.

A picture of one of our snow covered pine trees.  There's a whole line of them in our backyard that's visible from our back door.  I absolutely LOVE looking at them every time it snows.  Our little bit of country in the city.

We hope you all had as wonderful a Christmas as we did.  Please check back soon for an update about Eli's health and upcoming appointments.  Thanks again for reading and remember to cherish Every Little Beat...

I Can't Sleep and it's My Own Fault

You would think I'd know better by now. 

After a busy day (physically & mentally) I had some time to myself this evening.  I've been DVRing some Christmas shows.  Some for the boys and some for me.  Tonight I recorded Blake Shelton's Not So Family Christmas special that aired on NBC.  Zachary loves The Voice so I considered letting him watch Blake's show tonight.  Instead I watched it by myself after all the men in the house were asleep.  I'm so glad Zachary didn't watch it!  It was a hilarious show.  I laughed so hard and it felt really good.  However, it was DEFINITELY not appropriate for my five year old!

Then came my bad decision.  I watched one of the movies I had recorded on Hallmark.  It's called "The Christmas Heart."  The description said something along the lines of "a neighborhood bands together to support a young boy who desperately needs a heart transplant."  When I saw the description on our guide, I had to record it.  I didn't know if I would watch it, but I needed it on my DVR just in case I felt the need to watch it. 

I don't know if I thought my euphoric feeling from the Christmas special would float me through a movie that hit so close to home or if I was just on a power trip because I had total dominance of the remote control for the tv with DVR, but I watched it.  The whole thing.  My Blake Shelton Christmas Special happy bubble officially burst. 

The movie itself was okay.  Too many parts were Hollywood-ified, but the point was made:  You just have to believe.
*Spoiler Alert*  In the movie, a 15 year old basketball player collapses during practice.  After being rushed to the hospital it is discovered that he has hypertrophic cardiomyopathy (thickening cardiac muscles resulting in a weakened, enlarged heart).  It's determined he needs a transplant within a week or he won't live.  The teen's younger brother is struggling with his belief in Santa.  He says he'll believe if Santa brings his only wish...a new heart for his big brother.  Miraculously a perfect match became available within five days.  The dilemma is that there's a major snowstorm in the area & all the medical transport helicopters are stuck at outlying locations.  Luckily a pilot dressed as Santa has his own plane and he & his copilot fly the doctor who is in charge of transporting the heart in an Igloo cooler through the storm.  Unfortunately  they can't land since the airport has shut down.  The insistent pilot says "this isn't the Hindenburg I'm flying, all I need is 500 feet and some light to get this thing down!"  Suddenly they spot a makeshift runway on the street below them which is actually the street the dying boy lives on.  It's a neighborhood tradition to light thousands of luminaries along their street at midnight Christmas Eve and this year it was the welcome beacon for the pilot.  He lands the plane and a neighbor drives them to the hospital in his truck.  The whole crew (including the pilot dressed as Santa Claus carrying the heart in an Igloo cooler) rushes into the waiting room where the parents and doctor are anxiously waiting.  When the doctor comes out after the surgery his first words are "he's going to make it."  Then the whole family, doctors, nurses, neighbors, and pilot all hug
 and sing.

I could make a list a mile long of inaccuracies, but I still watched the entire movie and cried.  It was strangely therapeutic.  However I'm still awake now, hours later, because I'm afraid of what my "dreams" will bring.  Dreams is in quotes because a dream implies something good or positive and that's not what will fill my nocturnal thoughts if I were to sleep.  The Hollywood version of what is quite possibly our family's medical reality is still too fresh, too real.  I started to watch Blake Shelton's program again, but it wasn't the therapy I needed.  This is.  I needed to get it out again. 

The point of the movie was to believe and keep the faith.  It made its point.  Faith is something we all struggle with, but I think especially so when we're struggling to come to terms with stressful situations.  There are days I'm mad, days where I'm indifferent, and days where I feel alone.  Those days don't happen often, but they do happen.  That's okay.  Every relationship has its ups and downs, faith is no different.  I always know we're part of His plan even if there are moments when I feel like the plan sucks. 

So anyway, I recommend Blake Shelton's Christmas special for some good music and a good laugh (if you're a grown up!).  And I might even go to sleep for a couple hours now that I've watched SportsCenter twice and done this post. 

Specific prayer requests:
1)  For the real life family we know whose little fighter is waiting in the hospital until his new heart becomes available.  Indianapolis isn't Hollywood and their struggles last longer than the two hour movie.
2)  For all the heart babies (of all ages!) and their families who are struggling to come to terms with their situation and uncertain futures.
3)  For everyone to realize what a big problem Congenital Heart Defects are and how often they happen. 
4)  For more people to become organ donors, for more funding for research to prevent and treat CHDs, and for more people to donate blood whenever possible. 

Thank you all for your support and prayers.