We've had a lot of support since Eli was diagnosed in January of
2011. It's been pretty amazing. We always knew we had great family
& friends, but to see it in action is very humbling. The decision to start fundraising for Eli was a tough decision
for us. We work for what we have. We know others do too, especially in
this economy. We know that our children are not the responsibility of
others. However, we finally decided that only those who wanted to help
would do so. If they didn't want to, no pressure and no hard feelings.
The response has been incredible.
Here's a few examples of the support we've recently received:
--The shirt sales for Eli's MVPs raised more than we ever imagined. My most recent count was 183 tshirts and 59 hoodies for Eli's MVPs. We wanted to make sure Zachary felt included in this, especially since he's never once complained that Eli had shirts and Z didn't. So we had a shirt designed for him and sold them to family & friends at cost so Zachary could have a visual reminder that he's just as cool and important as Eli. We sold more than 30 "Zachary's Fan Club" shirts.
--In addition to shirt sales, we had a lot of donations. We often had people pay for more shirts than they ordered and told us to keep it for Eli's fund. Some didn't even order, they just gave money. Thank you doesn't seem sufficient.
--Bryan's work held a benefit luncheon for us this week. A committee passed out fliers to advertise within their district and when the day came there was a wonderful spread of hot dogs, coney sauce, chips, desserts, and drinks. They also had a dessert auction. People were asked to make a $5 donation for the meal. I don't know how many people showed up, but it was a lot! Many were wearing Eli's MVPs shirts which was awesome to see! Other districts have heard Eli's story through their office communications. From his story being shared across the state, we've gotten more shirt orders, donations, and messages of encouragement.
--After the story about Eli ran in our local newspaper (click here to read the article), we had a phone call. It was from a woman who read the story and was touched by what she read. She said that she was praying for all of us and would add Eli to her church's prayer list. Just the fact that this stranger took a moment to reach out to us was very sweet.
--The Facebook page has grown tremendously! One day last week I challenged people to share Eli's page on their personal pages to gain more "likes." The challenge was to get 21 more "likes" to put us at 200 total before his surgery (at the time it was 13 days away). In about four hours' time we were well over 200. As of now we're up to 271, almost 100 more than when I initially issued the challenge. I don't know everyone on the page anymore and I'm okay with that. One of our goals with starting the page and making it public was to increase the general public's knowledge of CHD. We're getting there! If you're on FB and haven't liked his page yet, do so by clicking here.
Please know that we are so thankful for anything and everything you've done for us. I'm running out of ways to express our gratitude. From the bottoms of our hearts, thank you for the prayers, orders, donations, meals, hugs, encouraging words, and anything I may have forgotten to list. Even with all that, we still have people asking "what can I do" and "call me if you need
something, anything!"
We've gotten those comments all along, but especially these last few
weeks. Most of the time our answer is to pray. In recent posts we've
also asked that people consider organ donation and make their wishes
known to family & friends. We also ask that you donate blood
whenever possible. Some readers have contacted us and told us that
because of inspiration from Eli, they have signed up to be an organ
donor and/or donated blood. Those comments have been so rewarding! To
those of you who have done either or both, THANK YOU!
Here's
something else we've decided would help us out and ANYONE can do
this: Send mail. Send a card, a letter, a postcard, whatever works
for you. Throughout all of his surgeries and hospitalizations, we
haven't received much mail and no hospital deliveries. Please don't
think I'm complaining. Eli was too young before, but now he's old
enough to get some enjoyment from something like that. In this age,
most of our communication is via phone & internet. I've tried to
save most of the electronic comments and well-wishes from people, but
it's just not quite as special as holding a card in front of you from a
loved one. Eli will have lots of time in a hospital bed and we're
stocking up on things to occupy his interests. Getting mail to open and
look at will help keep him busy. It will help Zachary feel more included
as we endure another separation from our firstborn who is just as
special to us with his whole heart as our half a heart child is. You
don't have to get some fancy card that costs $4. They're kids who are
pretty easy to please. They'll love a picture drawn on a piece of
paper, a note written beside a funny picture from a magazine, a short
message about how your day is going and what you're doing. It will also help keep me & Bryan in touch with the world outside Peyton Manning Children's Hospital. It's unbelievable how easy it is to forget the outside world while there. In some ways that's nice to shut off the bad things in the world, but we miss a lot of the good too.
If you have our home address, you're welcome to send it here. If you want it, message me and I'll send it to you. I'm not posting it here because I don't want it out floating in cyber space. Or you can send it to:
Zachary Veale or Eli Veale
201 East Main Street
Suite 401
Washington, IN 47501
That's a local business who will gather any mail received for the boys and bring it to us while we're at the hospital. After Eli's admitted I will post the hospital address, but it doesn't do any good until we have a room number for him (which we won't have until after surgery).
Thank you to anyone who is willing to help with this project. It will excite the boys so much to receive a bunch of mail!
Saturday, April 13, 2013
Thursday, April 11, 2013
The Countdown Continues
By this time next week, Eli's surgery will be over and he'll be spending his first night of this leg of his journey in the PICU (pediatric intensive care unit). What is this surgery? What will they do? In a nutshell, they're changing how the "used" blood (unoxygenated) returns to his heart. It will be rerouted to bypass the right side of his heart (the side that doesn't work) and go straight to the lungs to get oxygen. From there it will go to the left side of the heart to be pumped out to the body. This surgery is called a Fontan. For more information on the Fontan, the previous operations he's had, and what his defects are, click here.
He will also get a pacemaker. Why does he need a pacemaker? During Eli's last heart surgery (the Glenn or Hemi-Fontan) his heart rhythm changed. We've been told that a change in rhythm is common for these kids, but most don't happen until sometime after the Fontan. We like to think of Eli as an overachiever. Part of Eli's heart isn't firing properly. That affects his heart rate. A kid his age should have a heart rate of around 120. Eli's average is 80. When he's really mad he might get to 100. When we get upset our heart rates usually go up. Eli is two, his way of showing he's upset is by crying. If Eli is crying about something, it makes him feel bad. Physically feel bad, not emotionally "oh, woe is me" bad. He feels worse as he's crying, but again, he's two, so he doesn't know that. He just knows he had something to cry about and now he feels worse. So he cries more. That makes him feel even worse. It's a viscous cycle. It's hard for us because we don't want to give in to every single cry and make him think that crying gets him what he wants. On the other hand, we have to do what we can to calm him. Otherwise we'll be cleaning up vomit, his head will be very sweaty, his lips, nose, and fingers will be blue and it will take a LONG time to make him feel better. We try to use a lot of distraction but sometimes that doesn't work and we just give in. A pacemaker will help increase his heart rate and keep it in a steady rhythm. Dr. Steinberg (cardiologist who will put in the pacemaker) told us more than a year ago that he was not worried about Eli's heart stopping. If that was a concern, he would've had a pacemaker long before now. It's just not ideal for a single-ventricle baby to further stress his heart with an abnormal rhythm. Eli has tolerated that rhythm (a junctional rhythm for all my medical buddies reading this!) for over a year. The goal was to do it with the Fontan and that's where we're at now.
Here's what we know about pre op and surgery day so far. Tuesday, April 16, Eli has an appointment with the surgical nurse practitioner and Dr. Steinberg. They will examine him and explain more about the surgery to us. Eli will also have an echocardiogram (ultrasound of the heart) and an EKG (shows the electrical activity/rhythm of the heart). When we're done there, we'll be escorted to the hospital where he will have some xrays and bloodwork done. All in all it will probably be about three hours. We'll have the rest of the afternoon and evening together and we'll spend the night at my sister's house. Early Wednesday morning, April 17, Bryan and I will take Eli to the hospital. What time? We'll find out Tuesday. We don't have anything else going on Wednesday so we're pretty flexible with whatever they have scheduled ;) My sister & mom will bring Zachary to the hospital at some point. We haven't decided if that will be before surgery so they can see each other one more time, or if we'll wait until surgery has started. That will be determined later depending on moods and required times!
Eli's hospitalization is expected to be anywhere from a week to a month. It all depends on how his body tolerates this new "plumbing" they're doing. One complication that may arise is fluid on his lungs. The length of stay is directly related to how his body deals with the fluid (if there is any) and what interventions the doctors need to take to aid with that.
These past few days and the next few are busy for us. We're trying to have a lot of family time. We're trying not to think about it despite it always being on our minds. We're trying to finish shirt orders. We're trying to clean house, turn in our recycling, and take care of some yard work so we don't come home to the house the way it is now! We're trying to pack.
That's a task that almost deserves its own post! We have to pack in stages. We'll spend one night at my sister's so we don't need a lot for one night. Zachary will be staying longer with her so he'll need several days' worth of clothes, plus some of his favorite games, dinosaurs, loveys, movies, and art supplies (he plans on making a lot of cards while we're apart!) The day of surgery, we will have a bag of things to occupy our time in the waiting room. That bag will probably never be opened, but the effort must be made. It also needs to contain a few things for Eli that we'll give him when we finally get to see him after surgery. We won't know what room he'll be in until after surgery, so our bigger, several-days'-worth-of-stuff-bag will stay in the van until that evening. We'll need spare pacifiers, his lullaby CD, a DVD with noise he likes (something familiar & comforting), and a favorite stuffed animal or two. Yes, he'll still be unconscious, but in the past he knew his own things and he's even smarter now. Finally, we'll have two bigger bags to rotate between the van and the hospital room. That's so we don't have to be down to our last pair of underwear before doing laundry (there's a washer & dryer on one of the pediatric floors). We don't pack a lot for ourselves, but we will have a lot of Eli's favorite toys, books, DVD's, etc for him once he's awake and needs to stay in his bed but doesn't want to.
We're also stocking up on cards, small gifts, stickers, etc to mail to Zachary while we're apart. He'll be with my sister for the first few days and get to visit, but he will be back home with family before we are. Last time, we mailed one or two things every day so he constantly had something from me, Bryan, Eli or any combination of us. Something else we did last time and will do again is to let him pick out two folders (or if there's time, we'll make them). One folder will stay with him and the other with us. While we're apart we fill it with notes, pictures, anything that makes us smile and think of the other. When he comes to visit on weekends or when Eli's discharged home, we'll exchange the folders. Last time we made a treasure map for him. He didn't know about that until the end of one of his visits. We gave it to him when he was getting ready to leave so that he had something to look forward to when he got home. The next day he and Mamaw used the map to find the "X" that was in our yard and dig up the treasure. It was a box with goodies in Ziploc baggies. He had lots of stickers, a couple new movies and a book. He liked it a lot and we'll do something similar to that again. The point is something for him to look forward to at home even though the four of us aren't there together.
Another big project we did for both boys last time and are updating for this time, is a personal photo album. There's one for each boy and they're filled with pictures of family and friends. Zachary'swas mostly the four of us since that's what he was without. Eli's included more extended family & friends since that's what he was without. Both have been used a lot since that last surgery just because they're fun to look at. I wish I had stayed on top of updating them as time went by like I initially planned, but life gets in the way!
We're open to any suggestions for things to occupy Eli in the hospital or things to do for Zachary while we're apart. Comment on this blog post, send a message through FB, or email us at elismvps@yahoo.com
Thanks for your concern and support.
He will also get a pacemaker. Why does he need a pacemaker? During Eli's last heart surgery (the Glenn or Hemi-Fontan) his heart rhythm changed. We've been told that a change in rhythm is common for these kids, but most don't happen until sometime after the Fontan. We like to think of Eli as an overachiever. Part of Eli's heart isn't firing properly. That affects his heart rate. A kid his age should have a heart rate of around 120. Eli's average is 80. When he's really mad he might get to 100. When we get upset our heart rates usually go up. Eli is two, his way of showing he's upset is by crying. If Eli is crying about something, it makes him feel bad. Physically feel bad, not emotionally "oh, woe is me" bad. He feels worse as he's crying, but again, he's two, so he doesn't know that. He just knows he had something to cry about and now he feels worse. So he cries more. That makes him feel even worse. It's a viscous cycle. It's hard for us because we don't want to give in to every single cry and make him think that crying gets him what he wants. On the other hand, we have to do what we can to calm him. Otherwise we'll be cleaning up vomit, his head will be very sweaty, his lips, nose, and fingers will be blue and it will take a LONG time to make him feel better. We try to use a lot of distraction but sometimes that doesn't work and we just give in. A pacemaker will help increase his heart rate and keep it in a steady rhythm. Dr. Steinberg (cardiologist who will put in the pacemaker) told us more than a year ago that he was not worried about Eli's heart stopping. If that was a concern, he would've had a pacemaker long before now. It's just not ideal for a single-ventricle baby to further stress his heart with an abnormal rhythm. Eli has tolerated that rhythm (a junctional rhythm for all my medical buddies reading this!) for over a year. The goal was to do it with the Fontan and that's where we're at now.
Here's what we know about pre op and surgery day so far. Tuesday, April 16, Eli has an appointment with the surgical nurse practitioner and Dr. Steinberg. They will examine him and explain more about the surgery to us. Eli will also have an echocardiogram (ultrasound of the heart) and an EKG (shows the electrical activity/rhythm of the heart). When we're done there, we'll be escorted to the hospital where he will have some xrays and bloodwork done. All in all it will probably be about three hours. We'll have the rest of the afternoon and evening together and we'll spend the night at my sister's house. Early Wednesday morning, April 17, Bryan and I will take Eli to the hospital. What time? We'll find out Tuesday. We don't have anything else going on Wednesday so we're pretty flexible with whatever they have scheduled ;) My sister & mom will bring Zachary to the hospital at some point. We haven't decided if that will be before surgery so they can see each other one more time, or if we'll wait until surgery has started. That will be determined later depending on moods and required times!
Eli's hospitalization is expected to be anywhere from a week to a month. It all depends on how his body tolerates this new "plumbing" they're doing. One complication that may arise is fluid on his lungs. The length of stay is directly related to how his body deals with the fluid (if there is any) and what interventions the doctors need to take to aid with that.
These past few days and the next few are busy for us. We're trying to have a lot of family time. We're trying not to think about it despite it always being on our minds. We're trying to finish shirt orders. We're trying to clean house, turn in our recycling, and take care of some yard work so we don't come home to the house the way it is now! We're trying to pack.
That's a task that almost deserves its own post! We have to pack in stages. We'll spend one night at my sister's so we don't need a lot for one night. Zachary will be staying longer with her so he'll need several days' worth of clothes, plus some of his favorite games, dinosaurs, loveys, movies, and art supplies (he plans on making a lot of cards while we're apart!) The day of surgery, we will have a bag of things to occupy our time in the waiting room. That bag will probably never be opened, but the effort must be made. It also needs to contain a few things for Eli that we'll give him when we finally get to see him after surgery. We won't know what room he'll be in until after surgery, so our bigger, several-days'-worth-of-stuff-bag will stay in the van until that evening. We'll need spare pacifiers, his lullaby CD, a DVD with noise he likes (something familiar & comforting), and a favorite stuffed animal or two. Yes, he'll still be unconscious, but in the past he knew his own things and he's even smarter now. Finally, we'll have two bigger bags to rotate between the van and the hospital room. That's so we don't have to be down to our last pair of underwear before doing laundry (there's a washer & dryer on one of the pediatric floors). We don't pack a lot for ourselves, but we will have a lot of Eli's favorite toys, books, DVD's, etc for him once he's awake and needs to stay in his bed but doesn't want to.
We're also stocking up on cards, small gifts, stickers, etc to mail to Zachary while we're apart. He'll be with my sister for the first few days and get to visit, but he will be back home with family before we are. Last time, we mailed one or two things every day so he constantly had something from me, Bryan, Eli or any combination of us. Something else we did last time and will do again is to let him pick out two folders (or if there's time, we'll make them). One folder will stay with him and the other with us. While we're apart we fill it with notes, pictures, anything that makes us smile and think of the other. When he comes to visit on weekends or when Eli's discharged home, we'll exchange the folders. Last time we made a treasure map for him. He didn't know about that until the end of one of his visits. We gave it to him when he was getting ready to leave so that he had something to look forward to when he got home. The next day he and Mamaw used the map to find the "X" that was in our yard and dig up the treasure. It was a box with goodies in Ziploc baggies. He had lots of stickers, a couple new movies and a book. He liked it a lot and we'll do something similar to that again. The point is something for him to look forward to at home even though the four of us aren't there together.
Another big project we did for both boys last time and are updating for this time, is a personal photo album. There's one for each boy and they're filled with pictures of family and friends. Zachary'swas mostly the four of us since that's what he was without. Eli's included more extended family & friends since that's what he was without. Both have been used a lot since that last surgery just because they're fun to look at. I wish I had stayed on top of updating them as time went by like I initially planned, but life gets in the way!
We're open to any suggestions for things to occupy Eli in the hospital or things to do for Zachary while we're apart. Comment on this blog post, send a message through FB, or email us at elismvps@yahoo.com
Thanks for your concern and support.
Wednesday, April 3, 2013
Escape
Eli has been trying to escape. Okay, not necessarily escape, but he loves to go bye-bye. He hates being "left behind" and I don't blame him. However, he has to realize that he can't leave the house any time he wants to and that at the ripe old age of two years and five months, he is not as street-savvy as he believes himself to be.
Today he tried to leave five different times. The first time was adorable. He came to me wanting help to put on his Elmo backpack. Once it was on he left the room. I thought he was playing in his room. Instead, I heard the door to the garage open. I followed and asked him where he thought he was going. He looks up at me and says "Doc Amy. No boo-boos. Hugs." I got him back in and promised that he would see Dr. Amy soon and get a hug and no boo-boos (shots).
The second time was while I walked the dog in the front yard. I never go where I can't see the front door so it was easy to see it open and Eli step out. In his socks. I told him to go back inside and he did. He put one foot inside before turning around and starting down the walk. Albert & I changed our route and ushered Eli back into the house (with a few strong words and a stern look on my face). I must have been convincing because he didn't try again while Albert took me back to our original place for him to finish his business.
The third, fourth, and fifth times were this evening. Bryan and Zachary had left to shop for new shoes for Zachary's upcoming t-ball season. We knew last year's shoes wouldn't fit, but we didn't expect he would need three sizes larger. Silly us. Eli was left at home with me. It had nothing to do with me, he just wanted to go bye-bye. Never mind that he'd had two outings today (not the escape ones, legit outings in the van). He put on Zachary's shoes and headed to the front door. I let him because I knew it was locked and wanted to see if the two locks are any issue for him anymore. They're not. He was making his way to the porch with tears in his eyes and pleading "bye-bye!" as I brought him back into the house. I got him settled with some toys but as soon as I looked away, he was at the garage door and getting out. Again, I stopped him but he blatantly turned away from me and started back to the door. I picked him up, took the shoes off his feet and put him in his crib. He cried for a while but I left him in there because I knew he'd head straight to a door if I didn't. When I went to get him he was still crying as he stood at the rail of his crib with his arms over the side. I gave him a hug and said "I can't let you get away from me, you might get hurt."
Instantly I felt like a hypocrite. Here I am, spending the day keeping him by my side under the pretense of "not getting hurt" when in two weeks I turn him over to people who are strangers to him and they will hurt him. They will start IVs on him, give him medicines that make him feel weird, take his blood, put him to sleep, crack open his chest.... I could go on but that sufficiently describes some of what will happen in the first three hours he's at the hospital on the day of surgery. Yes, the purpose is to save his life, but he doesn't understand that. He understands boo-boos and owies. More than any child should.
That moment of instant hypocrisy describes how I've been feeling since we got this date scheduled. We KNOW he needs this. We KNOW we don't have a choice, it has to be done. But it's so hard to watch him play and realize that, at best, we're stealing weeks of his playtime and filling them with surgery, pain, doctors, nurses, therapists, tubes, IVs, monitors, oxygen, strange surroundings, and time away from his real family life. That's at best. At worst? I can't even think it. That's not true, I think it a lot. We have to. We have to prepare ourselves for the worst without dwelling on it. This surgery, in relation to the two previous heart surgeries he's had, is not the riskiest. That was the first one. Eli had a one in three chance of not surviving that operation. I don't know what the actual numbers are this time, but the last time (his second surgery) the risk of death was about 1%. I think this time may be a little higher, but not much. However, this is our baby and any percentage is too much. Our comfort is knowing that we're going to the right facility for us. We have the right doctors for us. We have amazingly supportive family and friends. We know the number of people praying for him increases every day.
We really know and believe all the positive things I just listed. We just can't help but worry he will "escape" from us one final time.
Today he tried to leave five different times. The first time was adorable. He came to me wanting help to put on his Elmo backpack. Once it was on he left the room. I thought he was playing in his room. Instead, I heard the door to the garage open. I followed and asked him where he thought he was going. He looks up at me and says "Doc Amy. No boo-boos. Hugs." I got him back in and promised that he would see Dr. Amy soon and get a hug and no boo-boos (shots).
The second time was while I walked the dog in the front yard. I never go where I can't see the front door so it was easy to see it open and Eli step out. In his socks. I told him to go back inside and he did. He put one foot inside before turning around and starting down the walk. Albert & I changed our route and ushered Eli back into the house (with a few strong words and a stern look on my face). I must have been convincing because he didn't try again while Albert took me back to our original place for him to finish his business.
The third, fourth, and fifth times were this evening. Bryan and Zachary had left to shop for new shoes for Zachary's upcoming t-ball season. We knew last year's shoes wouldn't fit, but we didn't expect he would need three sizes larger. Silly us. Eli was left at home with me. It had nothing to do with me, he just wanted to go bye-bye. Never mind that he'd had two outings today (not the escape ones, legit outings in the van). He put on Zachary's shoes and headed to the front door. I let him because I knew it was locked and wanted to see if the two locks are any issue for him anymore. They're not. He was making his way to the porch with tears in his eyes and pleading "bye-bye!" as I brought him back into the house. I got him settled with some toys but as soon as I looked away, he was at the garage door and getting out. Again, I stopped him but he blatantly turned away from me and started back to the door. I picked him up, took the shoes off his feet and put him in his crib. He cried for a while but I left him in there because I knew he'd head straight to a door if I didn't. When I went to get him he was still crying as he stood at the rail of his crib with his arms over the side. I gave him a hug and said "I can't let you get away from me, you might get hurt."
Instantly I felt like a hypocrite. Here I am, spending the day keeping him by my side under the pretense of "not getting hurt" when in two weeks I turn him over to people who are strangers to him and they will hurt him. They will start IVs on him, give him medicines that make him feel weird, take his blood, put him to sleep, crack open his chest.... I could go on but that sufficiently describes some of what will happen in the first three hours he's at the hospital on the day of surgery. Yes, the purpose is to save his life, but he doesn't understand that. He understands boo-boos and owies. More than any child should.
That moment of instant hypocrisy describes how I've been feeling since we got this date scheduled. We KNOW he needs this. We KNOW we don't have a choice, it has to be done. But it's so hard to watch him play and realize that, at best, we're stealing weeks of his playtime and filling them with surgery, pain, doctors, nurses, therapists, tubes, IVs, monitors, oxygen, strange surroundings, and time away from his real family life. That's at best. At worst? I can't even think it. That's not true, I think it a lot. We have to. We have to prepare ourselves for the worst without dwelling on it. This surgery, in relation to the two previous heart surgeries he's had, is not the riskiest. That was the first one. Eli had a one in three chance of not surviving that operation. I don't know what the actual numbers are this time, but the last time (his second surgery) the risk of death was about 1%. I think this time may be a little higher, but not much. However, this is our baby and any percentage is too much. Our comfort is knowing that we're going to the right facility for us. We have the right doctors for us. We have amazingly supportive family and friends. We know the number of people praying for him increases every day.
We really know and believe all the positive things I just listed. We just can't help but worry he will "escape" from us one final time.
Sunday, March 17, 2013
But Who's Counting?
One month. Thirty two days, actually. If you want to get specific, it's 776 hours which is only about 46,560 minutes. But who's counting?
I'm trying not to, but it's what I've been thinking about for the past hour. I just happened to see the clock change from 11:59pm to 12:00am. It changed from March 16th to March 17th in one short second and in that one short second an imaginary clock started ticking in my brain. I've shut that clock off for the past couple weeks when I heard its ticking, but now it's getting harder. Eli's surgery is set for April 17th at 8ish in the morning. Now we are past the "surgery's more than a month away" phrase and starting to say "it's a month away." Next we'll use weeks, then days. But who's counting?
I want to spend that time counting the smiles, playing games, watching the boys turn themselves into wild animals on the savannah, hearing their laughter, and burning each of those memories into my head. That's what I'll need to think about during the hours Eli's in surgery and in the following days and weeks. Most of the time I focus on what has to be done or just refuse to let the other thoughts get to me. Some moments it's harder to ignore those feelings of unrest. Don't get me wrong, I acknowledge the feelings, but I try not to dwell on them. The majority of my thoughts are positive. But who's counting?
Including the one I'm giving right now, there are approximately 18 tube feedings to do before surgery. Sixty-two doses each of Captopril and Prilosec. Twelve doses of aspirin. But who's counting?
Bryan will have his four wisdom teeth removed in five days. But who's counting?
Zachary has ten days of preschool left before he makes the trip to Indy with us. But who's counting?
Eli has one more appointment at Dr. Amy's for his Synagis injections prior to surgery. But who's counting?
I am.
I'm trying not to, but it's what I've been thinking about for the past hour. I just happened to see the clock change from 11:59pm to 12:00am. It changed from March 16th to March 17th in one short second and in that one short second an imaginary clock started ticking in my brain. I've shut that clock off for the past couple weeks when I heard its ticking, but now it's getting harder. Eli's surgery is set for April 17th at 8ish in the morning. Now we are past the "surgery's more than a month away" phrase and starting to say "it's a month away." Next we'll use weeks, then days. But who's counting?
I want to spend that time counting the smiles, playing games, watching the boys turn themselves into wild animals on the savannah, hearing their laughter, and burning each of those memories into my head. That's what I'll need to think about during the hours Eli's in surgery and in the following days and weeks. Most of the time I focus on what has to be done or just refuse to let the other thoughts get to me. Some moments it's harder to ignore those feelings of unrest. Don't get me wrong, I acknowledge the feelings, but I try not to dwell on them. The majority of my thoughts are positive. But who's counting?
Including the one I'm giving right now, there are approximately 18 tube feedings to do before surgery. Sixty-two doses each of Captopril and Prilosec. Twelve doses of aspirin. But who's counting?
Bryan will have his four wisdom teeth removed in five days. But who's counting?
Zachary has ten days of preschool left before he makes the trip to Indy with us. But who's counting?
Eli has one more appointment at Dr. Amy's for his Synagis injections prior to surgery. But who's counting?
I am.
Thursday, March 7, 2013
Date Set
As many of you know, we've been waiting to hear from the team in Indy about scheduling Eli's next surgery. We got the call last week but had to play some phone tag. As of Monday, we've got it set up (as set as a heart baby's schedule can be anyway).
Eli's Fontan and pacemaker placement will be Wednesday, April 17. That's the day our beautiful brown eyed baby will be put to sleep for the eighth time and his chest cracked open for the third time in his short life. It's the day we've been dreading for months and months, yet we are more aware each day that his body is needing this day to come.
What is the Fontan? If you want more detail, click here. In a nutshell, the Fontan reroutes how the blood from the lower part of his body (chest down) is returned to his heart and lungs for oxygenation. The second heart surgery (Glenn) was basically the same thing but it was for his upper extremities, head and neck. Because of the amount of blood that will be rerouted, his body will go through a huge adjustment in the first few days following surgery. He may have a lot of swelling and fluid on the lungs as his body responds to its new plumbing and figures out what to do with the extra fluid. We've been told kids who are bigger tend to have an easier time adjusting and may have less fluid on the lungs. That's why they've waited so long to do this, they wanted Eli bigger. In June of 2012, Dr. Parikh said ideally he should be between 25 and 30 pounds. His last weight was just under 27 pounds. Hopefully he can deal with the fluid adjustment but if he can't, they will give him diuretics to flush the fluid out (you may have heard of Lasix or Aldactone, these are diuretics he's been on before after surgery). If the medicine isn't enough they will have to place a chest tube (or multiple tubes) to drain the fluid from his lungs. That's why there's such a large window of time for his hospitalization. It all depends on how his body reacts to the rerouting and accommodates the extra fluid. Chest tubes mean a longer hospitalization. Of course there are other factors that could come into play, but the fluid is the major concern from what we understand at this point
Why does this seem so hard this time? We've done it twice before. The first heart surgery (Norwood), we had no choice. It was done four days after his diagnosis and we were completely in shock. It was painfully obvious to us, to anyone, that if he didn't have that surgery when he did, he was going to die very soon. His second heart surgery (Glenn or Hemi-Fontan) was a little more planned, but even though we knew it was coming and had some time to prepare, we were still somewhat numb from the year we'd had. Both of those surgeries as well as a heart catheterization and two surgeries for his feeding tube all happened within eight months of each other. In that time we had to adapt to a whole new lifestyle around this world of congenital heart defects. We knew Eli had to have that surgery and it didn't seem as risky as the first one. It wasn't as risky as the first one. Before the Norwood, he was dying. Before the Glenn, he was thriving. He was as healthy as he could be going into that surgery. That knowledge coupled with the euphoria we experienced when he not only made it out of that first surgery, but shocked everyone with his super-human recovery (my phrase, not the doctors!), led us to be very calm as we approached his Glenn.
Now it's time for the Fontan. By the time that surgery date comes, we'll have had 19 months to prepare ourselves for it. No, we didn't think about it everyday, especially in the beginning. But as time passed and we got closer, it was hard to ignore the nerves. We've had time to adjust our lives. We eat, sleep, drink, and breathe CHDs every moment of our lives, yet it doesn't always feel like it comsumes us. Most of the time it's an aspect of our lives. Other times, it's the silent focus. We've done more research, gotten more involved in the CHD community, and heard more stories from other families. Expanding our knowledge has its obvious benefits, but there are negatives as well. For every story of a successful surgery, there's a story of a family whose outcome was the worst. For every triumph, there's a tragedy. For every adult who can proudly lay claim to living to adulthood with a CHD, there's a parent whose CHD child didn't.
This surgery is not a fix. It is not a cure. I've said it before and I'll keep repeating it: There is no fix or cure for Eli's heart. These surgeries buy us time. We don't know how long. Our hope is 15 years or more, but we don't know. We've been asked if he'll just have to have surgery every few years to "keep going." Fair question, but no. The Fontan is the last planned surgery in this series for Eli. True, there may be some type of "maintenance" surgery or procedure down the road, but this is the last major surgery available to him at this point. Whenever his heart starts to give out/deteriorate/decrease in function, his next step will be a heart transplant. Many people will view that as a fix, and in some respects it will be because Eli will have a healthy heart beating in his scarred chest. However, a heart transplant is not a fix either. It's a used heart and the time frame for it to last is only about 10 years. It comes with a whole new world of strictly scheduled, expensive medicines that he will take for the rest of his borrowed life. It comes with an increased risk of cancer. It comes with restrictions on his activities that will continually remind him he's different from others. It comes at a steep emotional price. Knowing that a transplant could be our only hope after the Fontan is another reason why we aren't ready for this to happen. It seems like we'll be out of options.
When I notified one of my coworkers of the surgery date being set, she responded by saying it must be bittersweet. It is. We know he needs this. We know that he will feel better after this surgery. It will increase his energy level (which I must admit makes me wonder when I'll get a surgery to increase MY energy level to keep up with him!). His oxygen saturation levels are currently in the low to mid 70s. After the Fontan, his levels could be in the 90s. I don't know if he's ever been in the 90s for any length of time!
It's been hard to convince ourselves that now is the time. We don't want to wait until he's in distress. We want the preop conditions to be as optimal as possible. It's just hard to be on the phone scheduling a time to put him to sleep, crack his chest open, stop his heart, do the deed, sew him up, and keep him in the hospital for anywhere from a week to a month as I'm watching him jump around doing the Hot Dog dance while he wears his daddy's shoes and a plastic fireman's helmet. Even with his purple lips and fingers, he's cute as a button and rotten to the core and that makes him so perfect to us.
This time seems harder. Is it because we've had more time to learn about the good and the bad? Is it because the boys are older and we have to face their emotions more than we did two years ago? Is it because we're not looking forward to occupying Eli in a hospital bed for up to a month? All the above and then some.
For the other two heart surgeries, Zachary spent the day with his Aunt Cara (Bryan's sister). The first time, he was fine. He was barely three years old and really didn't understand what was going on. We thought that was true the second time, but we were wrong. Zachary spent the day throwing up until he heard Eli was out of surgery and doing well. He said, "That's good" and fell asleep on the couch for two hours only to wake up with a calm belly. He knew, but we didn't think he did. Now we KNOW he gets just enough to be dangerous. Some may think this is crazy, but he will be at the hospital with us the day of surgery. He needs to be there. Our parents and probably one or two of our sisters will be there too. They'll help us take care of him and shield him when necessary. Zachary has been involved in Eli's care since he came home from that first surgery by helping with his medicines, his feedings, and countless hours of therapy. Our five year old has earned the right to be with his family as his baby brother has another surgery on his sick heart.
Eli is older now too. He may be a little behind the norm when it comes to talking, but there's no mistaking his smarts. He knows when we're at the doctor's office and he's about to get a shot by the way the nurse walks in hiding the needles with his chart. For days afterwards he will point to his thighs and in a very sad voice say "boo-boo, Amy" (meaning Dr. Amy even though she's not the one givng the shots). He knows the exam tables, blood pressure cuffs, O2 monitors, and stethoscopes. He knows none of that machinery hurts him, but he often cries anyway because he's tired of it. He's probably had his blood pressure taken as many times as I have in my 36 years. Now we have to prepare to see him in a hospital bed, probably in pain, and just not his normal self. Yes, he'll be sedated for a while. Yes, he'll be "out of it" and not really care for a while, but most of the time he'll be awake. He will not feel well as his body adjusts and he'll most likely be pretty pissed off for a long time. Not that I blame him. We're stocking up on movies, making lists of his favorite toys that are hospital-bed friendly, and starting stockpiles of new toys, books, and gadgets that may keep his happy interest for a blessed three minutes at a time.
These are some of the reasons we're not looking forward to the Fontan.
So please, keep the prayers coming. Specifically:
- pray for our peace of mind over these next few weeks as we prepare our family for another separation and interruption in our lives
-pray for us to have lots of quality family moments that will help replace the moments of doubt in our minds
-pray for Eli's surgeon and cardiologist(s) to stay healthy and be ready to do their best for us again
Now you know when to wear your new Eli's MVPs shirt you've ordered! Obviously we want you to proudly wear them all the time, but especially on April 17. If you haven't ordered yet, there's still time. Contact us through Facebook or email your order to elismvps@yahoo.com and we can get it turned in next week. Thank you for your prayers and continued support. We will be asking for more of them as we get closer and get through this next stage in our lives.
Eli's Fontan and pacemaker placement will be Wednesday, April 17. That's the day our beautiful brown eyed baby will be put to sleep for the eighth time and his chest cracked open for the third time in his short life. It's the day we've been dreading for months and months, yet we are more aware each day that his body is needing this day to come.
What is the Fontan? If you want more detail, click here. In a nutshell, the Fontan reroutes how the blood from the lower part of his body (chest down) is returned to his heart and lungs for oxygenation. The second heart surgery (Glenn) was basically the same thing but it was for his upper extremities, head and neck. Because of the amount of blood that will be rerouted, his body will go through a huge adjustment in the first few days following surgery. He may have a lot of swelling and fluid on the lungs as his body responds to its new plumbing and figures out what to do with the extra fluid. We've been told kids who are bigger tend to have an easier time adjusting and may have less fluid on the lungs. That's why they've waited so long to do this, they wanted Eli bigger. In June of 2012, Dr. Parikh said ideally he should be between 25 and 30 pounds. His last weight was just under 27 pounds. Hopefully he can deal with the fluid adjustment but if he can't, they will give him diuretics to flush the fluid out (you may have heard of Lasix or Aldactone, these are diuretics he's been on before after surgery). If the medicine isn't enough they will have to place a chest tube (or multiple tubes) to drain the fluid from his lungs. That's why there's such a large window of time for his hospitalization. It all depends on how his body reacts to the rerouting and accommodates the extra fluid. Chest tubes mean a longer hospitalization. Of course there are other factors that could come into play, but the fluid is the major concern from what we understand at this point
Why does this seem so hard this time? We've done it twice before. The first heart surgery (Norwood), we had no choice. It was done four days after his diagnosis and we were completely in shock. It was painfully obvious to us, to anyone, that if he didn't have that surgery when he did, he was going to die very soon. His second heart surgery (Glenn or Hemi-Fontan) was a little more planned, but even though we knew it was coming and had some time to prepare, we were still somewhat numb from the year we'd had. Both of those surgeries as well as a heart catheterization and two surgeries for his feeding tube all happened within eight months of each other. In that time we had to adapt to a whole new lifestyle around this world of congenital heart defects. We knew Eli had to have that surgery and it didn't seem as risky as the first one. It wasn't as risky as the first one. Before the Norwood, he was dying. Before the Glenn, he was thriving. He was as healthy as he could be going into that surgery. That knowledge coupled with the euphoria we experienced when he not only made it out of that first surgery, but shocked everyone with his super-human recovery (my phrase, not the doctors!), led us to be very calm as we approached his Glenn.
Now it's time for the Fontan. By the time that surgery date comes, we'll have had 19 months to prepare ourselves for it. No, we didn't think about it everyday, especially in the beginning. But as time passed and we got closer, it was hard to ignore the nerves. We've had time to adjust our lives. We eat, sleep, drink, and breathe CHDs every moment of our lives, yet it doesn't always feel like it comsumes us. Most of the time it's an aspect of our lives. Other times, it's the silent focus. We've done more research, gotten more involved in the CHD community, and heard more stories from other families. Expanding our knowledge has its obvious benefits, but there are negatives as well. For every story of a successful surgery, there's a story of a family whose outcome was the worst. For every triumph, there's a tragedy. For every adult who can proudly lay claim to living to adulthood with a CHD, there's a parent whose CHD child didn't.
This surgery is not a fix. It is not a cure. I've said it before and I'll keep repeating it: There is no fix or cure for Eli's heart. These surgeries buy us time. We don't know how long. Our hope is 15 years or more, but we don't know. We've been asked if he'll just have to have surgery every few years to "keep going." Fair question, but no. The Fontan is the last planned surgery in this series for Eli. True, there may be some type of "maintenance" surgery or procedure down the road, but this is the last major surgery available to him at this point. Whenever his heart starts to give out/deteriorate/decrease in function, his next step will be a heart transplant. Many people will view that as a fix, and in some respects it will be because Eli will have a healthy heart beating in his scarred chest. However, a heart transplant is not a fix either. It's a used heart and the time frame for it to last is only about 10 years. It comes with a whole new world of strictly scheduled, expensive medicines that he will take for the rest of his borrowed life. It comes with an increased risk of cancer. It comes with restrictions on his activities that will continually remind him he's different from others. It comes at a steep emotional price. Knowing that a transplant could be our only hope after the Fontan is another reason why we aren't ready for this to happen. It seems like we'll be out of options.
When I notified one of my coworkers of the surgery date being set, she responded by saying it must be bittersweet. It is. We know he needs this. We know that he will feel better after this surgery. It will increase his energy level (which I must admit makes me wonder when I'll get a surgery to increase MY energy level to keep up with him!). His oxygen saturation levels are currently in the low to mid 70s. After the Fontan, his levels could be in the 90s. I don't know if he's ever been in the 90s for any length of time!
It's been hard to convince ourselves that now is the time. We don't want to wait until he's in distress. We want the preop conditions to be as optimal as possible. It's just hard to be on the phone scheduling a time to put him to sleep, crack his chest open, stop his heart, do the deed, sew him up, and keep him in the hospital for anywhere from a week to a month as I'm watching him jump around doing the Hot Dog dance while he wears his daddy's shoes and a plastic fireman's helmet. Even with his purple lips and fingers, he's cute as a button and rotten to the core and that makes him so perfect to us.
This time seems harder. Is it because we've had more time to learn about the good and the bad? Is it because the boys are older and we have to face their emotions more than we did two years ago? Is it because we're not looking forward to occupying Eli in a hospital bed for up to a month? All the above and then some.
For the other two heart surgeries, Zachary spent the day with his Aunt Cara (Bryan's sister). The first time, he was fine. He was barely three years old and really didn't understand what was going on. We thought that was true the second time, but we were wrong. Zachary spent the day throwing up until he heard Eli was out of surgery and doing well. He said, "That's good" and fell asleep on the couch for two hours only to wake up with a calm belly. He knew, but we didn't think he did. Now we KNOW he gets just enough to be dangerous. Some may think this is crazy, but he will be at the hospital with us the day of surgery. He needs to be there. Our parents and probably one or two of our sisters will be there too. They'll help us take care of him and shield him when necessary. Zachary has been involved in Eli's care since he came home from that first surgery by helping with his medicines, his feedings, and countless hours of therapy. Our five year old has earned the right to be with his family as his baby brother has another surgery on his sick heart.
Eli is older now too. He may be a little behind the norm when it comes to talking, but there's no mistaking his smarts. He knows when we're at the doctor's office and he's about to get a shot by the way the nurse walks in hiding the needles with his chart. For days afterwards he will point to his thighs and in a very sad voice say "boo-boo, Amy" (meaning Dr. Amy even though she's not the one givng the shots). He knows the exam tables, blood pressure cuffs, O2 monitors, and stethoscopes. He knows none of that machinery hurts him, but he often cries anyway because he's tired of it. He's probably had his blood pressure taken as many times as I have in my 36 years. Now we have to prepare to see him in a hospital bed, probably in pain, and just not his normal self. Yes, he'll be sedated for a while. Yes, he'll be "out of it" and not really care for a while, but most of the time he'll be awake. He will not feel well as his body adjusts and he'll most likely be pretty pissed off for a long time. Not that I blame him. We're stocking up on movies, making lists of his favorite toys that are hospital-bed friendly, and starting stockpiles of new toys, books, and gadgets that may keep his happy interest for a blessed three minutes at a time.
These are some of the reasons we're not looking forward to the Fontan.
So please, keep the prayers coming. Specifically:
- pray for our peace of mind over these next few weeks as we prepare our family for another separation and interruption in our lives
-pray for us to have lots of quality family moments that will help replace the moments of doubt in our minds
-pray for Eli's surgeon and cardiologist(s) to stay healthy and be ready to do their best for us again
Now you know when to wear your new Eli's MVPs shirt you've ordered! Obviously we want you to proudly wear them all the time, but especially on April 17. If you haven't ordered yet, there's still time. Contact us through Facebook or email your order to elismvps@yahoo.com and we can get it turned in next week. Thank you for your prayers and continued support. We will be asking for more of them as we get closer and get through this next stage in our lives.
Tuesday, February 19, 2013
Cardiac Checkup Update
 | ||
| don't you? :) |
Eli had a cardiac checkup today, complete with echocardiogram (ultrasound of the heart and vessels) and EKG (shows the electrical activity/rhythm of the heart). He did pretty well for the echo (I'm sure the Ibuprofen and Benadryl I gave him in the parking lot had nothing to do with his cooperation). It takes a long time for them to get all the right views they want since his anatomy has changed so much because of the defects and two surgeries. He didn't throw a fit until the last 15-20 minutes. I was really proud of him!
 |
| We took a break during the echo and Eli was NOT happy about getting back on the table to resume the test. You can see my bribery on the table: Bottle, cut up grapes, apple slices, and Goldfish. It didn't work. |
Once we got in the doctor's office, they did an EKG. It showed he is still in the junctional rhythm. That was a surprise to no one. Frankly, if he converted on his own after being in this rhythm for the last year and a half, that would surprise people.
When we saw Dr. Kumbar (Evansville cardiologist) she did a thorough exam (listening to his heart and lungs, feeling for pulses in his groin & feet, and palpating his abdomen to check his liver). She noted his color (blueish) and started asking questions about his health since we'd last seen her.
 |
| Eli with Dr. Deepa Kumbar. She's the pediatric cardiologist who initially diagnosed him in January 2011. We get to see her for most of our follow ups so we don't have to go to Indy as often. |
His echo had nothing surprising on it. There's some deterioration or decrease in some areas they look at, but it's expected and not alarming. We've known for a while he has mitral valve regurgitation (the mitral valve is the valve between the upper & lower chambers on the left side of his heart). The left side of Eli's heart has to do most of the work of his whole heart since the right half isn't functional. That's a lot of blood to pump along and regurgitation means that instead of flowing from the top chamber to the bottom, there's some "backflow" from the bottom to the top. This is somewhat expected with his defects but is still something to monitor and take care of as needed. About a year ago his regurgitation classification was changed from "mild" to "moderate" meaning it was getting worse. Today's echo showed the regurgitation was about the same as his last echo.
Overall, she sees a little boy who has had good weight gain, who is consistently blue around the lips and fingers indicating a decrease in his oxygen saturation levels, and whose activity level is slightly affected by his decreasing heart function. All this leads her to believe his Fontan will be done within the next couple months. She will send today's testing and her notes to Drs Parikh (main Indy cardiologist) and Abraham (surgeon) for them to review. She expects we should hear from them within a week or so regarding scheduling.
I can't say it was a good appointment, but it definitely wasn't bad. We didn't hear anything we didn't expect, so I guess that was good. We'll post more when we hear from Indy about scheduling.
If you haven't been reading our blog lately, we are currently selling tshirts and sweatshirts with an "Eli's MVPs" logo on the front. They are available in three colors each. To read the blog post describing our fundraiser, click here. We are asking everyone who orders a shirt to wear it the day of Eli's next surgery as part of a "Pray for Eli" day. We've had a wonderful response, but of course we want to sell more! Thank you to everyone who has already ordered! If you want to order, you can contact us via our personal Facebook pages, Eli's MVPs Facebook page, or by emailing us at elismvps@yahoo.com.
Keep praying for him as we enter this next stage of surgery preparation! THANK YOU!!!
Wednesday, February 13, 2013
Eli's MVPs
Again, I'm very excited. We have started a Facebook page dedicated to Eli, updates about his health, and CHD Awareness. It's called "Eli's MVPs", and we are very proud to ask all of you to become one of Eli's Most Valuable People. We are so grateful for the support you've given us since his initial diagnosis. We really don't know what we'd do without it. If you're on Facebook and haven't "liked" our page yet, please do so by clicking here.
If you remember, last year we were the Ambassador Family for the Daviess County March of Dimes. We put a lot of pressure on ourselves to come up with the "perfect" team name. We wanted it to center around Eli and yet include everyone who has helped us. You know, the whole "it takes a village" attitude. Bryan suggested Eli's MVPs (meaning Most Valuable People). It was perfect. It tied in with sports, which is a big part of our lives. More importantly, it honored those who have helped us so much by praying, offering an encouraging word, and many, many other gestures. We also decided that name wouldn't be solely for the MoD team, it was for Eli and anything we chose to do to benefit him or increase CHD Awareness.
Over the last two years I've lost count of how many times we've been asked "What do you need? What can I do?" Most of the time our only answer was to ask for prayers. We're still asking for those and that request will never stop. We've recently been thinking more and more about Eli's future. We're finally able to see that he may have a future. We are fully aware of the challenges he faces, but we've come to realize that more and more heart babies are living to adulthood (with or without a transplant). Granted, Eli's defects are one of the most severe combinations of CHDs, but even with that he still has a chance to grow up. We've come to realize that we need to get serious about helping Eli through his future. If he lives to adulthood, he will have a lot of expenses. He may not be able to work a full-time job. He may not qualify for health insurance. He may have a job, but will have to take a lot of time off for medical procedures and testing. A simple cold could put him out of work for a lot longer than the rest of us. He may not be able to pay his bills. The future isn't certain for anyone, but for a guy with half a heart it's even less certain.
We want to start a fund for Eli's medical expenses. Our goal is that it is something he can draw from as an adult, but if need be we can draw from it before then for his expenses. Did you know that the cost for inpatient surgery for CHD patients exceeds $2.2 billion annually? In just over two years, Eli alone has accumulated almost $2 million in medical expenses. He has a long road ahead of him, and we want to help him by making it easier.
So, all of you who have ever asked what you can do to help, here you go:
Become one of Eli's MVPs. We are doing our first-ever fundraiser for
Eli. We've had a lot of compliments on the shirts we got for MoD, so
we're starting with that. We are selling tshirts and hooded sweatshirts
with the Eli's MVPs logo on the front of them.
Here's the info:
Tshirts are offered in these three colors
Sizes available are Youth XS - L and Adult S - 5XL
Prices: $15 for all youth sizes and adult up to XL, $17 for adult 2XL and up
Hooded sweatshirts are in these three colors
Sizes available for Kiwi and Charcoal colors are Youth S - XL and Adult S - 5XL
***Antique Sapphire is only available in Adult S - 5XL, no youth sizes***
Prices: $25 for all youth sizes and adult up to XL, $27 for adult 2XL and up
We are getting these shirts from Garland Graphics here in Washington. That's who did our shirts last year, and we have been very happy with the product. Personally, I wear mine two or three times a month, and it has held up very well. I don't see any signs of fading and the seams are still intact. This has been a quality garment, so we are expecting the same this time around.
Once we have Eli's next surgery date set, we are going to ask everyone who purchases a shirt or sweatshirt to wear them on that day as a symbol of support for our little fighter.
If you want to order one, we do need payment before we can place the order. Cash and checks made out to Bryan &/or Jessica Veale are accepted. We are looking into taking payments via PayPal, but as of now that is not an option. To order, contact us on Facebook through our personal pages or through Eli's MVPs page. You may also contact us by email at elismvps@yahoo.com with your order or any questions you have.
Thank you, Thank you, THANK YOU for helping!
If you remember, last year we were the Ambassador Family for the Daviess County March of Dimes. We put a lot of pressure on ourselves to come up with the "perfect" team name. We wanted it to center around Eli and yet include everyone who has helped us. You know, the whole "it takes a village" attitude. Bryan suggested Eli's MVPs (meaning Most Valuable People). It was perfect. It tied in with sports, which is a big part of our lives. More importantly, it honored those who have helped us so much by praying, offering an encouraging word, and many, many other gestures. We also decided that name wouldn't be solely for the MoD team, it was for Eli and anything we chose to do to benefit him or increase CHD Awareness.
Over the last two years I've lost count of how many times we've been asked "What do you need? What can I do?" Most of the time our only answer was to ask for prayers. We're still asking for those and that request will never stop. We've recently been thinking more and more about Eli's future. We're finally able to see that he may have a future. We are fully aware of the challenges he faces, but we've come to realize that more and more heart babies are living to adulthood (with or without a transplant). Granted, Eli's defects are one of the most severe combinations of CHDs, but even with that he still has a chance to grow up. We've come to realize that we need to get serious about helping Eli through his future. If he lives to adulthood, he will have a lot of expenses. He may not be able to work a full-time job. He may not qualify for health insurance. He may have a job, but will have to take a lot of time off for medical procedures and testing. A simple cold could put him out of work for a lot longer than the rest of us. He may not be able to pay his bills. The future isn't certain for anyone, but for a guy with half a heart it's even less certain.
We want to start a fund for Eli's medical expenses. Our goal is that it is something he can draw from as an adult, but if need be we can draw from it before then for his expenses. Did you know that the cost for inpatient surgery for CHD patients exceeds $2.2 billion annually? In just over two years, Eli alone has accumulated almost $2 million in medical expenses. He has a long road ahead of him, and we want to help him by making it easier.
 |
| This is our lovely model. He even held the shirt out so you can see most of the design. FYI: Drool spot not included, but if you're really interested we can work something out. |
 |
| You can't see the full logo here, but how could I not include this cheesy smile?!? |
Tshirts are offered in these three colors
 |
| Sapphire |
 | |
| Kiwi |
 |
| Garnet |
Sizes available are Youth XS - L and Adult S - 5XL
Prices: $15 for all youth sizes and adult up to XL, $17 for adult 2XL and up
Hooded sweatshirts are in these three colors
 |
| Antique Sapphire |
| |
| Kiwi |
 | |||||||||||||
| Charcoal |
Sizes available for Kiwi and Charcoal colors are Youth S - XL and Adult S - 5XL
***Antique Sapphire is only available in Adult S - 5XL, no youth sizes***
Prices: $25 for all youth sizes and adult up to XL, $27 for adult 2XL and up
We are getting these shirts from Garland Graphics here in Washington. That's who did our shirts last year, and we have been very happy with the product. Personally, I wear mine two or three times a month, and it has held up very well. I don't see any signs of fading and the seams are still intact. This has been a quality garment, so we are expecting the same this time around.
Once we have Eli's next surgery date set, we are going to ask everyone who purchases a shirt or sweatshirt to wear them on that day as a symbol of support for our little fighter.
If you want to order one, we do need payment before we can place the order. Cash and checks made out to Bryan &/or Jessica Veale are accepted. We are looking into taking payments via PayPal, but as of now that is not an option. To order, contact us on Facebook through our personal pages or through Eli's MVPs page. You may also contact us by email at elismvps@yahoo.com with your order or any questions you have.
Thank you, Thank you, THANK YOU for helping!
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