Fontan-iversary

I've been playing with Eli this morning and reflecting on the past year.  His Fontan (third open heart surgery) was one year ago today.  One year ago today the waiting room at St. Vincent's Hospital was dotted with colorful tshirts that read "Eli's MVPs".  The town of Washington was dotted the same way.  Eli's FB page was filled with photos of people wearing their shirts in a show of support for Eli.  We also received innumerable messages of support and prayer from many people.

It was a long surgery since the Fontan was expected to take about 5 hours and during pre op testing we found out he also required mitral valve repair.  In addition to that he also was getting his pacemaker so he spent nearly 8 hours in the OR.  Initially he was doing very, very well.  In the coming days he developed some complications that turned into major complications.  All in all that admission was seven weeks long. 

Because you all follow him so well, I'm not going into details about the events of the year.  Let's just say that of the last 365 days, Eli has spent nearly half of those as an inpatient.  And when he's not been in patient, he's had some multiple outpatient issues to deal with such as home administration of IV antibiotics through a PICC line or his ongoing therapies. 

Throughout the past year we've faced many things we never imagined we would.  I'd love to say it's all behind us, but that isn't true.  Congenital heart defects do not "go away".  There is no single surgery, procedure, medicine, or exercise to cure him.  A transplant is not the answer, even if he requires one someday.  Now in addition to his heart problems he has a whole new set of challenges because of the strokes.  Because of all that, we've grown closer as a family.  We've been made more aware of the incredible power of prayer.  I wish Eli never had to go through these struggles, but because he does, he, and the rest of us, will be better because of them. 

There are no words to express the gratitude we have for all the prayers, hugs, meals, donations, gifts, and support from all of you.  Thank you isn't sufficient and I don't know what the next best words are.  Please know that we know how blessed we are by all of you.

To end, I thought I would lighten the mood by telling you how Eli celebrated his Fontan-iversary this morning:  He locked me out of the house while I walked Albert.  Yep, we party hard around here!

Home and Loving It!

We have been home for a little over two weeks now.  Eli has therapy every week day; occupational therapy comes Monday, Wednesday, Friday and physical therapy is Tuesday and Thursday.  The therapists come to the house for his sessions.  That is so wonderful for me.  Eli loves getting to go places, but it is hard to take him out these days, especially by myself.  He's a busy and active three year old but has balance issues, can't use his left arm much, and is still wobbly on his feet because he's only been walking for a little over a month.  Let's just say that the majority of my days are spent within arms' reach of the boy.  It's tough to keep myself that close and yet not help him too much.  He has to learn (relearn) how to do things for himself.  Having therapy at home is building his confidence as he maneuvers his way around the house.  Overall he has made lots of improvement but of course there's a long way to go. 

Health-wise he's been doing pretty well until late last week.  He developed some allergies and/or a cold.  That's been getting better but he's still got a runny nose and red, goopy eyes.  The good news is that he hasn't had any fevers with it.  We know he will be sick at some point again and he will run a fever.  However, we are so fresh from his recent bout with staph aureus that it really scares me.  I don't know if you remember, but after Eli's most recent heart surgery it was determined that the staph was in the graph in his heart, in the wires used to close his sternum, and on the pacemaker leads and wires.  The graft and sternal wires were replaced and the pacemaker was removed.  All but one of the pacemaker leads were removed.  There was one lead on his left ventricle (his only working ventricle) that Dr. Abraham couldn't remove without causing too much damage.  The unspoken fear for us and Eli's entire healthcare team is that the staph could still be hanging out on that lead even after six weeks of IV antibiotic treatment.  That one lead is the reason Eli cannot ever have an MRI and why I will forever have heart palpitations and be sick to my stomach anytime we even think he has a fever.  He had his antibiotics and now it's just a waiting game as we pray the staph is gone. 

Let's move on to the more exciting news around here! 

Zachary  I always talk about Eli, let me brag on Zachary for a little bit.  You all know what an awesome kid he is and if you don't then just take my word for it.  He is so glad to have his brother home.  Probably glad to have me too, but it's so rewarding to see how much he loves Eli.  Even through all the weeks we were apart he kept working hard in school and hasn't really acted out in any crazy way.  There are some things that come up from time to time but we just deal with it as it comes and nothing has been as bad as it could be with everything he's endured.  For St. Patrick's Day he had an assignment at school.  When I saw this it brought tears to my eyes.  He had six wishes to make and here's what they were:  Disney Cruise, Turbo Fast (a movie), a huge pizza, for Eli to come home, an airplane museum, and a real dinosaur.  It melts and breaks my heart that he used a wish for his brother to be home.  Most kids would like to give their little brothers away (and I'm sure there are times Zachary wants to as well), but he gets how special it is to have Eli home because he knows how rotten it is without him here. 

On April 2nd Zachary lost his first tooth!  While we were apart, one of the things I was afraid of missing would be his first loose tooth and losing it.  We got home on a Friday and on Saturday night I was giving the boys their bath.  Zachary was roaring like a dinosaur (surprise) when I noticed something in his mouth.  On closer inspection I saw that his permanent tooth had already broken through behind his baby teeth on the lower jaw.  His response?  "I thought something felt weird."  Then we checked his teeth and found that he had a loose one.  Several days later he and Eli were playing in his room and he came running out yelling about blood and his tooth.  I was sooooo happy we were all together for this occasion for him. 

The hole from Zachary's first lost baby tooth.  He was a very excited little boy!
 

Little League  Washington's Little League Opening Day is on Saturday April 12.  Our boys have been asked to throw out the first pitches of the season.  We are so excited.  They talk about it at home and have some practice, but I'm really curious to see what happens when we get there in front of a crowd of people!  Eli will throw the baseball first and then Zachary will throw a softball.  If you're going to be at the Sports Complex watching your little loved one that day, please wear your Eli's MVPs shirt.  Eli gets a big kick out of seeing his shirts on people.  He's starting to grasp the support he has around him...even if he doesn't know why!  We are very excited for Saturday and I can't wait to see how the boys do!


Motorcycle Ride  A group from Washington is sponsoring a benefit for Eli.  This is also on Saturday April 12.  Because of the Little League obligation we won't be able to attend the departure from downtown (with police escort!).  We are planning on being at the Krome Khaos club house when they return.  This event is like nothing we've ever participated in before and we are so grateful to those in charge who heard about Eli and want to help.  We plan on using any funds raised to help purchase a special trike like he used at Peyton Manning Children's Hospital.  We thought it would be fitting for the bikers to help buy him a bike!  Eli's bike will have foot and hand pedals. The combination hand/foot drive builds strength and coordination as well as increases range of motion.  It helped him a lot physically and mentally at the hospital and we want to continue that at home.  Depending on his size and needs, these trikes (called an AmTryke) can range from $400 to $800 or more. 

If you ride a motorcycle and want to participate, here's the info on the ride. 

Shirts and Bracelets and Pizza Hut Coupons  I will be closing out our Eli's MVPs tshirt and hoodie order soon.  I wanted to have it turned in and done by now, but of course life has other plans.  Our hard drive fried on our laptop and that took the whole computerized spreadsheet I had of all the orders.  Luckily I still had a paper trail of orders but that's taking time to get them entered into our new spreadsheet.  Thank you all for your patience.  I haven't forgotten and I definitely don't mean to put you off.  If anyone still wants to order a shirt let me know by Monday April 14th please.  Also we still have Eli's MVPs bracelets for sale ($3 each plus shipping if necessary) and we have coupon cards for Pizza Hut ($10 each).  Contact us via Eli's Facebook page or email us at elismvps@yahoo.com.



Thank you so much to everyone who has brought us a meal as we adjust to being back home.  I cannot tell you how helpful it has been to not worry about cooking everyday.  It's hard to do tasks like that when I need to be so close to Eli all the time.  The main problem with having these meals brought to us is that my family is figuring out I'm not such a great cook!  The food has been delicious.  We think it's because it was made with love.  Thank you!  If anyone wants to sign up there are some dates left.  Go to www.takethemameal.com  The recipient name is Veale and the password is Eli's MVPs.  Or you can contact us through his Facebook page or email to set something up.  Thank you again to anyone who has helped out. 

We are so grateful for all the support and prayers from all of you.  The phrase "miracle" is not something I use lightly, but I really believe Eli is a miracle.  He has made amazing progress since his strokes.  For the first week we truly didn't know if he'd wake up.  Once he did, his progress was slow at first.  Our big excitement was when he moved his eyes from one side to another.  Now he's bossing us around and pestering his big brother like he's supposed to.  We know his progress is due to all the prayers that have been said for him.  Please keep praying for him.  He has a lot of work left to do and the majority of our time is spent trying to find ways to make everything he does therapeutic in some way. 

I'll end with a sweet picture of the boys.  It was taken tonight as they were playing in the living room.  These two are our whole world and we couldn't ask for anyone better.