OUR CAUSE
#HelpSuperBenjaminFly

We are raising money for our 16-month-old nephew/grandson Benjamin Smith, who has Down syndrome, and his family. On January 24, “Superman” Benjamin, as we like to call him because since before he was born he has been fighting against long odds, underwent open heart surgery. As a baby with down-syndrome, often these major surgeries end up with additional complications, and while his OHS was successful, there have been many complications since.

What was expected to be a 5-day stay in PICU post-surgery has turned into several weeks or more. Those complications include a collapsed lung with severe secretions likely caused by a viral and bacterial lung infection. His oxygen levels are not self-sustaining yet, so he is on a machine for 30% of his oxygen. These complications are on top of the healing from the actual surgery itself: his sternum, which was sawed open, and his heart that had three holes repaired. This little guy is hanging on for dear life, and we want the family to have as much support as possible so they can be there for him. “Superman” needs our help!


HOW YOU CAN HELP

Many of you have asked how you can help. At this point, the best way you can help is to donate to the cause and to share Benjamin’s story so that others can join in (#HelpSuperBenjaminFly). Our initial goal is to raise $5,000 as soon as possible so that Amber and BillyJack can focus on caring for Benjamin, instead of worrying about how to make ends meet. While we would like the Smiths to have freedom to use the funds where they need them most to best care for Benjamin, here’s an example of their needs and the breakdown of how the funds might be used:
-$3,000 for unpaid leave from work
-$1,000 additional childcare expenses for other children
-$1,000 additional food and transportation expenses (They live 1.5 hours from the hospital!)

1. Please donate:
Click the orange button to donate, or if you are uncomfortable contributing online, please mail check made out to Jeremiah Selvey with “#HelpSuperBenjaminFly” in the memo
to the following mailing address:
Jeremiah Selvey
7200 Franklin Ave, Apt 403
Los Angeles, CA 90046

Jeremiah will collect the checks and forward the funds to Amber and BillyJack to #HelpSuperBenjaminFly.

2. Please share:
Click the blue buttons to share Benjamin’s story and to encourage others to donate and share his story.

3. Please stay tuned:
Follow this page for updates, as well as the social media of the family members, so you can help make others aware.

4. Please keep Benjamin and his family in your thoughts and prayers.



UPDATES FROM AMBER & BILLY JACK

If you want to know more about what is going on, here are the social media updates from Amber and BillyJack Smith, Benjamin’s mom and dad...

January 24, 2019, 5:48am

Here goes nothin’! We’re on our way to Peyton Manning for Benjamin’s open heart surgery. I shed many tears last night in anticipation of not only his surgery, but also the medical care that will be provided for our 9 month old in our home. God gave me a very stretching day yesterday, but I know He is using it to refine me, to refine our family. We would appreciate your prayers today. Pray for Benjamin’s safety. This surgery is “routine” for the surgeon, but not for us....Pray for Camden! With adoption comes many struggles, one of which is anxiety when parents leave, even if just for a few days. He’s in loving hands for sure, but anxiety is still there. Pray for Addison, that she would see the goodness of our God through the grown up trials she is having to experience at such a young age. And pray for BillyJack & I, that we would recall Truth, that we would trust that God cares for our kids FAR more than we ever could. And pray that we would grow closer to one another through this hard season.

I can’t express how thankful I am for my family & friends. Every one of my siblings & my parents dropped everything to be here. Jeremiah flew in from California, Daniel Selvey Shaw flew in from Florida (barely!!!!) with his 7 month old. BillyJack’s dad drove 15 hrs. Tuesday so he could be here yesterday to meet Benjamin & spend some time with him before surgery! And the encouraging texts I’ve received from some very special friends are perfect reminders of God’s goodness & faithfulness. I can’t tag everyone, but know that it doesn’t go unnoticed & we are grateful.

P.S. Addison had some final snuggles & conversations with Benjamin as she kissed him goodbye & told him to come home soon with his heart all better.

#Benjaminwillteachtheworldsomuch
#Benjaminthebrave



*****
January 24, 9:56am

Benjamin surgery update: They began the incision in his chest at 9:20 am. We just heard from the nurse that he just now went on bypass, which means his heart is drained of blood & the surgeon is beginning the repair of his mitral valve & his AV canal defect. He will probably be on the bypass machine for the next 1-2 hrs.

#Benjaminwillteachtheworldsomuch
#Benjaminthebrave




*****
January 24, 12:49pm

Benjamin is off of bypass, his heart echo looks good! Praise God! They have now finished closing him up & he is being moved to the PICU! BillyJack & I are just waiting to go in & see our sweet baby


*****
January 24, 5:01pm

Benjamin update: Well, not great news. From a heart standpoint Benjamin looks great! The repairs were made, his echo looked good, & they closed him back up. From a lung standpoint things are a little bit more hairy. The upper lobe of his right lung collapsed prior to even being opened up, & they tried maneuvers to help the lung recover, but with no success. His oxygen levels are very low & he is on 100% oxygen right now. They can’t extubate & he remains on the ventilator. We have been told to throw the 5-day-stay plan out the window & plan on at least 2 weeks.

They will be running more tests for viruses & bacterial infections. He’s currently on his tummy to help with the secretions, etc. He will remain on a paralytic at least until he is on his back again. We feel like we simply can’t catch a break these days. Prayers appreciated!!!!

#Benjaminwillteachtheworldsomuch
#Benjaminthebrave
#OurSuperman



*****
January 25, 5:37pm

I know there are lots of family & friends anxiously awaiting an update on sweet Benjamin, so here it is. Benjamin’s lung is still collapsed which is a bummer. But his blood tested positive for adenovirus and he also has a bacterial infection. Since everything was negative from Monday’s pre-op bloodwork, that means he’s at the beginning stages of this. We were told that we need to plan on him remaining on the ventilator for another 7-10 days, but if it’s shorter we can count it a blessing.

The virus could partially explain the collapsed lung, but if it continues this way for the next day or 2, then he will likely have a bronchoscopy (under anesthesia again) to try to find another explanation.

He was on 100% oxygen yesterday with his O2 sats in the 80’s (that’s low...the goal is always 95 or higher!). Today they have cut it back gradually to only giving him 27% oxygen & his O2 levels are in the mid-to upper 90’s! This is news to celebrate! He was able to spend 6 hours on his back today to see how his oxygen levels did (we were allowed to touch his head momentarily), & now he’s back on his tummy. He’ll remain on sedatives & the paralytic for a few days most likely.

They placed a feeding tube this morning & began a VERY SLOW small volume feed this afternoon. His skin is reacting to lots...for example the socks they put on his hands & feet. So next time I go home I will be getting his own wash cloths, socks, & blankets

We have been blessed by visitors today including a few family members & our sweet friend Christine Phillips Bolton who brought some yummy snacks. Then someone from the Down Syndrome Indiana came to see us & brought some snacks, toiletries, a big soft blanket, & books. We felt so blessed and it helped to pass the time! Visitors are welcome to come see us, we just can’t take you into the room to see Benjamin. Thank you again for all the support & love. We know that this could be so much worse, but this is still incredibly hard, not being able to touch him, much less hold him. Regardless of the sedatives, Benjamin is still melting hearts around hereI’m counting on a 3 week stay and will celebrate if it’s shorter! The great news is that from a heart standpoint he is doing awesome! We just have to get past these respiratory issues now!
#Benjaminwillteachtheworldsomuch
#Benjaminthebrave
#heartwarrior
#OurSuperman




*****
January 26, 8:00pm

Here’s the latest update:
Benjamin has both a viral & bacterial infection that are pretty hard on the lungs. He’s on morphine & is heavily sedated, & when he is on his back he is also on a paralytic! (He gets rolled over every 6 hrs.)

His lung is still collapsed & the X-ray this morning (Saturday) showed very dense secretions, probably meaning that the infections are approaching their peak. The doctor agreed with us that we should NOT rush to a bronchoscopy yet, but instead treat the infections aggressively for the next few days. If the lung has not recovered by Tuesday or Wednesday, then we’ll discuss the possibility of anesthesia to do a bronchoscopy to look for the underlying cause.

We are still not able to hold him, & because he really needs to rest right now, we should not touch him or talk to him except for very briefly if he needs to be calmed. He is still expected to be on the ventilator for another week or so, so this will not be a short stay.

PRAISING GOD FOR:
•We got to see his beautiful blue eyes with Brushfield spots for a very brief moment & I was able to capture it on camera!
•The other 3 kids are doing EXCEPTIONALLY well!!!!!
•Benjamin’s heart repairs were successful & his echo & EKG looked exactly as they would expect following surgery!
•Benjamin’s oxygen levels have increased significantly and the oxygen concentration he’s being given has been decreased since Thursday! Not out of the woods but heading in the right direction! (Sats at 90-95 and O2 concentration at 30-40%)
•Visitors, texts, & phone calls have been a constant reminder of the love & support God has given us in the form of family & friends. We can’t always respond right away, but it boosts our spirits each time we hear that notification on our phone❤️

#Benjaminwillteachtheworldsomuch
#Benjaminthebrave
#OurSuperman
#heartwarrior