When Life Hands You A Broken Heart

Logan's Journey With CHD

Logan was diagnosed at two weeks old with Complex Congenital Heart Defects. We were shocked to learn he had five very complex defects: D-Transposition of the Great Arteries, Double Outlet Right Ventricle, VSD, Pulmonary Stenosis and a Right Aortic Arch. He has underwent two open heart surgeries already, the BT Shunt and Rastelli Procedure with RV-PA reconstruction using a Contegra Conduit. We face an uphill battle with Logan but no matter how high the mountains are that we face, we have HOPE! He is a BRAVE little boy and our HERO!

A mother’s perspective.

by Stephanie Husted

You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked..."What's a CHD?" I could quote terminology...There's stats that I could give...But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?
It’s Lasix,aspirin,Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…
It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.
It’s dozens of calls to his pediatrician…(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.
It’s watching him sleeping…his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)
It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…
It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.

Wednesday, December 30, 2009

Update and some prayers . . .

Ok.....Logan is FINALLY happy after moving to the floor, eating three orange blue bunny popsicles and watching some movies. Thank goodenss for such a wonderful Children's Hospital. He recieved lots of "feel good drugs" in recovery becuase he was MADDER than mad. He tried hitting me at least a few dozen times and was screaming mad fighting with everyone. FUN TIMES!!! Once the recovery nurse mentioned "popsicle" he was all hers...like putty in her hands! :)

So we are hanging out...processing the news from earlier. THANKFUL that he did so well today!! So here is a quick recap of what went down.

When they got in there and injected the contrast (dye) to see how things looked they were pretty surpirsed at how bad things appeared. His pressures were so high that right now they are currently the same as his body's pressure. Normally the pressures inside the heart should be much lower than the body's pressure. Also they discivered that the VSD leak in his patch (was supposed to close it) is leaking a fair amount but not enough to cause him any trouble at this time. His right ventricle actually looked like it was functioing pretty ok. Mr. Muscle...the evil doer that has been up to no good is blocking a pretty fair amount of his pulmonary artery. There was no way that stenting was going to be possible becuase of the VSD leak and also because of how close it would need to be placed to his tricuspid valve. If they attempted it they could've blown his valve which would not have been good. Also.....he will need surgery soon and Dr. Divekar wants him to have it before the 1st of February. Right now with his heart condition and the pressures where they are at Logan has no room for error....which is NOT good.

So....they will meet on Monday with Dr. Davis, Logan's surgeon, and call us with a date for surgery.

Thank you for the prayers today and all of the support. We greatly appreciate it!!

I want to get in a quick prayer request for sweet Stella Turnbull who is currently at the U. Sarah and Travis, her parents, actually walked into the recovery room the same time we were there with Logan. It was bittersweet sharing a hug with Sarah since we last saw each other here at the PICU when both of our children had surgery. Keep sweet Stella and her family in your prayers. I linked to her caringbridge site in my post from yesterday.

Cath is complete!

This is Jen, updating for Stef. She just called to let me know Logan did well in the cath lab and is in recovery now. Thank you for all the prayers for Logan. Stef is going to update with more details later, but they did find out that Logan will need surgery within the next couple of months. They were all doing okay with this news, but they could really use some prayers. Thanks for all of your support!

Jen
http://www.thehuegelfamily.blogspot.com

He's in . . .

Just wanted to let everyone know that Logan was just taken into the cath lab early. He was happily drugged up singing along to Alvin and the Chipmunks. He actually went right into the arms of the anesthesiologist and into the cath lab they went.

Say lots of prayers for him. Dr. Divekar didn't sound like he thought a stent would be possible but he was waiting to fully decide on a plan once he is in there.