Jesus

Whenever someone does something for you--especially something overwhelmingly wonderful--our right and natural response is to praise and thank them. But what can I say about Jesus? He is beyond every description. Far surpassing every praise! He has been my constant companion in these devastating and joy filled days. He has held me through waves of sorrow and brought me countless tokens of love to remind me I am not forgotten or forsaken. He hasn't turned away when I have been coldly unbelieving or coldly indifferent to Him. In short, He has been perfect in His love and absolutely lavish in His grace. Jesus, I love You. Thank You for all You've done for me.

"The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life--of whom shall I be afraid?" Psalm 27:1

That's all, folks

We're outta here!

One week

Jackson is doing well, and God-willing we will be heading home tomorrow. A lot has transpired in one week...a lot of good and necessary things. Jackson's pleural effusion led to a resolution of a previously hidden problem, our medicine and feeding schedule has been simplified, and (believe it or not) Mason and I were able to get some wonderful, much-needed sleep. Thank you for each and every prayer! God is good.

Cardiac catheterization

After a long afternoon (he was gone to the lab for almost four hours!), Jackson is finally back in his room. As the doctors suspected, the vein that had appeared to be open on ultrasound was actually blocked. They made several unsuccessful attempts to open it by dilating it with a balloon, but when this didn't work they placed a stent. The stent worked wonderfully and they were able to see good blood flow right away. They now expect the effusion to resolve quickly...and, Lord-willing, not come back. Unfortunately stents don't grow, so this one will have to be replaced with a larger one in a few years. Also, worst news of all, the blood thinner shots have been restarted and will continue, most likely, for six more months. Ugh. We know it's a small price to pay in the long run, but very hard in the here and now. He finally got into a fitful sleep. Praying for sweet rest and comfort for him, and overwhelmingly grateful to still be holding this boy in our arms.

Change of plans

They were able to work Jackson in to the cardiac cath schedule for today...he's getting ready to go back anytime now! It will be primarily "exploratory", but if they do find blockage they will either break it up with a balloon or place a stent. We appreciate prayers for our little friend, and great wisdom for all involved.

Our pal

Rainy Sunday

Jacks is doing well, but will be hanging out at Children's for a few more days at least. The doctors met together as a team on Friday and decided that they would like to do a bit deeper digging into any possible causes of this effusion. They said that though his venous ultrasounds showed adequate blood flow, occasionally they have known these to be misleading. They would like to take him to the cardiac cath lab on Tuesday or Wednesday to get a better look at his blood flow. We are thankful for this just because it is a bit unnerving to think of taking him back home without ever really knowing what caused this. So we're getting settled back in... The census is lower this time around, so we have a wonderfully large room to ourselves. He's had great nursing care and at least a couple nurses he's had before in the past. So many things to be thankful for...

Step down

Well, I had a big long post typed up and accidentally deleted it...ahh! Jackson is doing well and was made step down status today (staying in the same room...7 West 12b). His x Ray this morning showed his effusion is improving. After exploring and ruling out several more serious possible causes, they now feel fairly certain this complication was the result of "outgrowing" his home dose of diuretic. I asked why he still requires a diuretic (his heart function is great with the pacemaker), and the doctor said he still has a small chylous leak due to his clots. They hope and expect this leak with resolve over time, as long as his clotting doesn't worsen. So for now they will continue with IV diuretics, wean his oxygen, and watch the effusion (Lord-willing) continue to improve. He's had enough of all this bed and tubes business...he's very happy to be snuggled this afternoon.

The sweetest

Jacks has been the sweetest little sick pal. He does not at all appreciate all the poking, prodding, noise and tubes, but has still managed to squeeze out lots of smiles. He even gave Mase his first laugh last night! It was like a family reunion when we got here last night! So many sweet doctors and nurses popping in to say hi and check on him. The doctor who was over his care at birth came in to see him and decided he needed to be ICU status because of how labored his breathing was (it seemed to get significantly worse right after we got here). They kept him in a step down room close to the unit but are treating him as an ICU patient. With that said, they feel he is very stable at this time and are hopeful that the effusion can be effectively treated with IV meds alone. The main focus of his day today is to rule out/search for possible causes of this new effusion. They have said they are hopeful we won't be here long. Jackson was put on high flow oxygen last night to give his body a rest and they are weaning that off today as he's able to tolerate it. Thank you for all your prayers. We are thankful for buddy to be with those who know him and his medical history so well, and who care so much about his welfare as well.

Pleural effusion

We are en route to St. Louis. Jackson has developed a pleural effusion of his right lung. Our pediatrician found it this afternoon after we brought him in for low oxygen saturation levels. We're hopeful this will be a short stay, but sure appreciate your prayers. We love this little friend more than words can say.

1/13/15

Well, there is a good bit of same-old, same-old around here these days. After a lot of trial and error we, along with our pediatrician, felt fairly convinced that Jackson's tummy problem was due almost entirely to the negative effects of his narcotics. As narcotics do, his seems to very much effect his gut and bowel motility. This makes it very difficult for him to pass gas or stool and causes bloating and general stomach discomfort. With that said, two days ago after having good poopy diapers, his stomach seemed worse than ever...ugh. By yesterday he was absolutely miserable. Any medicines or milk led to immediate crying and squirming. So now his new antacid has been increased to twice a day. (It's worth a try.) Jackson has been on "fortified" breast milk since birth. This means each tube/bottle feeding has formula mixed in with it to add extra calories. Yesterday afternoon we ran pedialyte through his tube for several hours then switched back to breast milk overnight but left out the formula. He did great! So maybe the formula was a culprit? Either way it's gone now...yay! I've never been excessively fond of it anyway. (The pediatrician also ordered several stool sample tests.) The formula is gone, but unfortunately the narcotics aren't quite that easy. We long for the day when that morphine bottle goes into the trash. The NG tube too. Jackson hasn't made any progress on taking a bottle. He loves it...for about 5-10 minutes. After this he arches his back and refuses to drink. The speech therapist came last week. She said he has a good, strong suck, but exhibits classic signs of reflux. She recommended adding rice cereal to his bottle, but with as much trouble as he has with digestion, this doesn't seem like an option at this time. Well, that's the skinny on a very chubby belly boy. God is keeping us...one day at a time.

Miss Scotland Clark

Today we want to celebrate a brave little girl who managed to pack lots of life into her 8 years. You will want to read the full story. Miss Scotland Clark was born with a heart defect requiring open heart surgery. She left the hospital and went on for the next 6 years unchecked by her heart function. However, her heart started showing signs of failure. On September 24, 2014 her heart went into an abnormal rhythm that lead to ventricular fibrillation and eventually cardiac arrest. Attempts to restart her heart were unsuccessful.

I (Mason) learned about the events of that day during a phone conversation with Scotland's mom (we both work at A.T. Still University). During the talk we realized The Clarks and the Vanns have a lot in common. Both Jackson and Scotland were born with heart defects. Both of our kids were treated in the cardiac unit at St. Louis Children's. Both of our kids had the same surgeon. Jackson even stayed in the exact same room that Scotland used during her hospitalization! And the last thing is my favorite. Scotland and I share the same birthday, January 9. I couldn't be happier to share the spot with her today.

Scotland's parents started The Scotland Clark Project to support families caring for sick children. Actually the phone conversation I mentioned earlier was a call from Scotland's mom on behalf of the foundation. They wanted to send support to help with Jackson.

Please take a moment to check out their website. Also, if you are able, consider giving a donation through the links at the top of their page.

http://www.scotlandclarkproject.org