Tuesday, October 15, 2013

Warrior Updates

This post is going to be an update on several of the kiddos we've asked you to pray for in the past.


He had his heart transplant a couple weeks ago.  Since the transplant, his parents have been taught many different things about learning to care for him and his new heart.  From what I understand, most of it was medication related.  Caleb will be on multiple antirejection medications for the rest of his life.  They've had to learn what meds can and can't be given together, what needs to be given with food, what has to be given on an empty stomach, how far apart the meds must be given, etc, etc.  I think Katie said he takes about 20 doses of medicine a day.  It's a lot to learn, but (in Katie's words) "it's so worth it!"

Last week he was released from Riley Children's Hospital to go to the Ronald McDonald House with his parents.  That is so he could be close by for testing he still had to have.  Caleb is also in isolation as he adjusts to the antirejection meds.  He has to wear a mask anytime he's out of his room and contact with visitors is very limited.  Because of those restrictions, Caleb, his parents and big brother have had some bonding time that was very much needed for all of them.  Katie blogged that the four of them ate dinner at the same table for the first time in almost a year.  It's really the little things in life, isn't it?  Caleb had a heart biopsy to check for rejection and that came back with great results.  Things have been going well since then.  Caleb was admitted to Riley on November 1, 2012 and I just read that today, October 15, 2013 Caleb will be going HOME!  He's actually never been to this house before but I'm sure he will adjust to it wonderfully.  It's just a house and this family knows that home is wherever the four (soon to be five!) of them make it!  Their family and friends are organizing a parade of sorts.  There will be people lining some of the streets on their route from the hospital to home so Caleb can see everyone waving at him and cheering for him.  Sometime tonight they are holding a praise rally at their church in thankfulness of Caleb's transplant and return home.  Caleb and his family will not be there because of the isolation issues.  I would love to hear Caleb and his brother's reaction as they drive through the gathered crowd on their way home.  What a neat way to celebrate his homecoming while respecting the family's privacy and isolation! 

Please don't check Caleb off your prayer list.  He still needs our prayers for the rest of his life.  Rejection could happen anytime.  There are still many things for him and his family to learn about living with a heart transplant.  However, the big picture is that he's alive, thriving, and going HOME!!!!


Liam is a feisty little guy I've never had the pleasure of meeting.  His mom, Carolynn, was one of our favorite nurses through Eli's seven week hospitalization in the spring.  The day Eli was discharged (June 4), Liam was diagnosed with cardiomyopathy.  To summarize:  Liam was transferred while on ECMO to Cincinnati Children's, he was diagnosed with Castleman's Disease (very rare and no other known cases of Castleman's and cardiomyopathy have been found yet...Liam is a groundbreaker), chemotherapy and radiation to control the Castleman's, an operation to place a Berlin heart (mechanism worn on the outside of his body that helps function as his heart and takes some of the work off Liam's damaged heart) before he could finally be listed for transplant.  He had such a long road to get through before he could even be listed, but he's a trooper and overcame incredible obstacles.  Then on October 1 he suffered a stroke.  That is a major set back for him and he had to be moved to "inactive" on the transplant list.

Liam is currently still in the critical care unit at Cincinnati.  He had two drains placed that are removing fluid/blood from his brain.  He was kept in a medicinal coma so his brain could "rest" and he was starting to be weaned from that medication.  Now he is suffering though a "storming" phase.  What is storming?  His temperature will rise above 101F, his blood pressure rises, his heartrate increases to above 130 beats per minute, his breathing is faster, he's agitated, sweating, and his body is rigid. There's not much they can do for him through these phases.  Carolynn says this is the hardest thing they've had to watch Liam endure in the sixteen weeks since his initial diagnosis.

This family has been hit hard with bad news and rough times.  This is supposed to be one of the best times of their lives as they are expecting a second child (girl!), but instead of being able to enjoy her pregnancy they're stressed as they pray for their son's life.  Please keep this family in your prayers as they endure this roller coaster they never wanted to ride.


Madison is a funny little gal with cheeks that rival Eli's.  We met her family when Eli had his second heart surgery.  Madison and Eli have very similar heart defects and both have feeding tubes.  I'm not sure how much Madison uses hers anymore because I know after a lot of work she was starting to take more by mouth.  Madison will be having her third open heart surgery, the Fontan later in October.

As you know, Eli's Fontan road was a rocky one.  I documented the majority of it through this blog and Facebook posts.  Many times, as I was posting updates with not so great news, I thought of Madison's parents.  I kept thinking "I hope this doesn't get Becky and Dan scared for Madison's Fontan!"  Please remember Madison, her parents, and big sister in your prayers as her surgery date approaches.


I haven't met Nathan or his momma, but we are Facebook friends.  She and I had both commented on something and hers included the fact that her son had a heart defect.  I singled her out and asked about her son's heart.  We became FB friends and keep up to date on each other's kiddos.  Nathan's heart defects are similar to Eli's and Nathan has other health issues to deal with as well.  He just had heart surgery a few weeks ago and is recovering nicely.  This family lives in Canada and it's been really interesting to me to see how different our healthcare systems are.  This kid is so fun.  I love seeing pictures of him because, unless he's asleep (which is often in a really weird position), he always has a smile on his face.  Please keep Nathan in your prayers as he continues his recovery.


Riley is a sweet ten year old girl we met while Eli was hospitalized after his Fontan.  Initially it was thought Riley needed an appendectomy but further testing revealed much worse news for her.  She had a form of stomach cancer that was very rare, even more rare for a pediatric patient.  I had the opportunity to talk with her parents on occasion and was always impressed with their positive attitude and faith.  The family motto was to "FROG" it.  FROG = Freely Rely On God.  She endured months of chemotherapy and treatments.  I followed her journey through her Facebook page.  She and her family (parents and two sisters) helped raise lots of awareness about pediatric cancer.  Sadly, Riley's earthly fight ended on October 10.  Her family is currently planning her celebration of life.  Please keep them in your prayers as they prepare to honor the short life of their beloved Riley.


Chloe is a local heart kiddo who we've only met through Facebook!  One day we will meet!  Eli and Chloe have the same local doctor and both are treated by the cardiac group at Peyton Manning Children's Hospital.  As far as I know, Chloe is doing well and doesn't have anything major coming up soon, but her momma is expecting their second child in 2014 and her daddy has recently joined the military.  This is a family who could always use prayers for endurance and strength!


Riley is a sweet little girl who was born with defects similar to Eli's.  I don't even know how I found her Facebook page, but I'm glad I did.  She is so cute and it's been fun watching her kick some CHD butt!  She's been through two open heart surgeries, most recently the Glenn in the middle of September.  Riley has been recovering well and hopefully she and her family can just have some fun for a while before having to prepare for anymore heart procedures!


Bennett is a baby boy born a few days ago.  Within hours of his birth, he was diagnosed with Hypoplastic Left Heart Syndrome.  He was flown to Riley where he will have his first open heart surgery on October 16th.  Please keep this sweet family, new to the CHD world, in your prayers. 

There are more kids whose families we've met through the hospital, online support groups, or mutual friends and we include them in our prayers as well.  There are so many.  If you're reading this and thinking "why didn't she mention 'X'?" please don't think I've forgotten you or that we don't pray for you!  The ones listed here are the main ones we have contact with and and have requested prayers for.  Because of that, I wanted to give an update on them so if they're in your prayers, you have the most recent information about them.  Thank you for caring about all of us!

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