Luke's 13 Today!

Happy birthday Luke! He and Tori are enjoying the good life at home this week during spring break. Luke started his special day by visiting Dr. Das at the cardiology clinic. His heart echo shows no change in his pulmonary artery pressure. We're a little disappointed that the pressure is not lower, but grateful that things are NOT worsening. Dr. Das increased his medication to the full therapeutic dose, which has been planned all along. He remains somewhat concerned about the size of his pulmonary artery as seen on the chest x-ray from 2 days ago. However, no change was noted on his echo which gives a much more detailed picture of what's going on in the chest as compared to the x-ray. Our teenage boy grew an inch and gained a pound in only a month. We'll be headed to see Dr. Grady & Nurse Pegi in St. Louis at the end of April.

Luke ate his birthday dinner at Goose Creek Diner. He selected a vintage 2010 glass of iced Diet Pepsi which had choice density, was full-bodied, and exhibited outstanding weight on his palate. He dined on cornbread, onion rings, chicken fried steak with mashed potatoes and gravy. He gave the entree portion of the meal two 'thumbs-up' and a full smack on the table (then Dad's head) to show his appreciation. He didn't touch his carrots which he found patently offensive (what kind of parents give a kid carrots on his birthday anyway?). He completed his exquisite meal with delectable carry-out peanut butter cake from the Comfy Cow (& boy he thought it was so so good!). Upon his return home, he was pleasantly surprised to find a special birthday cupcake and original finger-painting artwork from his Breity cousins! A birthday bash for Luke & Dad is to follow in a couple of weeks.

Please continue to keep Luke in your prayers.

UofL Pediatric Grand Rounds...

Invited by Dr. Das, Matt attended Pediatric Grand Rounds at UofL last Friday February 26th. Dr. Steve Abman (http://www.uchsc.edu/peds/faculty/bios/abmanbio.htm) from the University of Colorado spoke on the subject that is near & dear to his heart - Pulmonary Hypertension. Dr. Abman is considered a preeminent researcher, teacher & clinician in that field. Matt & Dr. Das were able to meet with Dr. Abman after Grand Rounds to discuss Luke's evaluation and treatment in detail. Dr. Abman commented that Luke had received excellent care, and reiterated the hopeful news that we've heard from Dr. Das and Dr. Grady previously. He kindly offered Matt the opportunity to discuss Luke's case anytime, and offered his services should we seek another opinion in Denver.

Just a Spoon Full of Pudding...

Helps the medicine go down...

Luke spent a relatively short time at Kosair today in the Outpatient Medical Observation area being monitored while he took his first dose of medicine- (in a spoon full of tapioca!) - he tolerated it very well with no problems whatsoever. He had another dose before bedtime, and tomorrow will have his full 3 doses.

We knew the majority of nurses working in the unit, and they were happy to see Luke and spoil him just like the old days!

Our hero Dr. Das came and checked in on us several times and it seems that Luke has grown fond of him. Dr. Das even gave Luke a snack bar to munch on while we waited out our time, checking blood pressure every 15 minutes...what a nice man, we are so thankful he was on call that snowy Saturday morning a month ago to give us new hope for prolonging Luke's life!

Luke will have an office visit and a heart echo with Dr. Das in a month or so to monitor the hypertension. Let's pray that the numbers will be significantly lower! Not likely after just a month, but we can always pray for that - one of our nurse friends said today "We serve an AWESOME God!" Amen to that!

On a lighter note...we installed a "therapy" net swing for Luke in our unfinished basement last night and he got to swing in it tonight for the first time - he giggled hysterically the entire time!

Great to hear that contagious laughter...

Thanks once again for your prayers and support as we made it through this important day!

Got It!

Happy to report that Luke attended school for a full week this past week! He is doing great, still no symptoms - not that we expect any, but it goes back to that "every day is a gift" idea.

We have cleared a huge hurdle this past week with God's help of course. Dr. Grady and Pegi warned us about the battle we'd have in obtaining the necessary medicine for Luke. "Wicked expensive and wicked hard to get" were the exact terms Dr. Grady used. After numerous phone calls to and from Humana insurance, Humana pharmacy, St. Louis, Ky Medicaid, etc.,

over the course of 5 days - in a matter of 45 minutes or so - the situation turned around and was completely resolved. Pegi, who was also working on the matter from St. Louis, was finally told by Humana the medicine could only be authorized, filled, and covered if it was done through a certain pharmacy. She called the number they gave her...and to make a long story short, (ha!) Luke's prescription ended up in the hands of our pharmacist friend who then took care of everything else for us. Even the Medicaid authorization came rolling in the next morning!

Just think of it: our nurse in St. Louis calling a certain pharmacy in Louisville, our certain friend is working that day - at that very time, and happens to be the certain one chosen to fill Luke's vital prescription. Beyond amazing...and humbling...to know that God had it all worked out without our help, it just had to be in His timing. Oh, and did I mention that I later learned a group of prayer warriors in Nashville (of whom we only know one person) were praying at that exact time about Luke's medication - and also since then, 2 other friends have shared the urge to pray about his medication, all around the same time? God is so good. Thanks to all of you prayer warriors on our behalf - many of whom we don't even know & may never even meet.

So, speaking of prayer - Monday, 8th of Feb., Karen will take Luke to Kosair to actually get his first dose of medication under supervision. There is potential for a drop in blood pressure with this medicine, (called Ravatio) so he will be monitored for an hour or two after taking his first dose. If all goes well, he will take 3 doses each day from now on. Please pray that he will tolerate the medicine

with no side effects.

We will return to St. Louis Childrens the last week of April for tests, and a visit with Dr. Grady. Please pray the medicine will be so effective between now and then that his pressures will return to normal in his lungs.

We are reminded of what Ralph Waldo Emerson said - this hangs framed in our home: "Do not go where the path may lead, go instead where there is no path and leave a trail."

We will post tomorrow night to let you know how the medicine works out!

Blessings to everyone!

We're Home!

We are back home. First the important stuff: Luke's pulmonary hypertension is unchanged from where it was when he was hospitalized earlier this month. That is good because it hasn't progressed, but it is also a little disappointing that God has not granted us a miracle in our time. We have to remember that He's in control though - not us.

The news from Dr. Grady was optimistic! He thinks Luke has likely had this condition for quite some time. Given that he has no symptoms and mild enlargement of the right side of his heart, he believes his prognosis will likely be measured in years. It remains too early to know for sure, we'll just have to wait and see how his tests turn out over the coming months. He emphasized that Luke is blazing his own trail - there are no children anywhere with his special combination of problems. He will start on an oral medication three times a day which will hopefully slow the progression of the pulmonary hypertension. It is fairly safe, well tolerated, and doesn't require intense monitoring. We will go back to St. Louis in three months for a follow up appointment & another heart echo.

Dr. Grady, Ms. Pegi (his nurse), and the staff at the Cardiology Clinic and Children's Hospital were great. The facilities were amazing - bright, colorful, plenty of windows, etc. Getting around was easy. They even had a two-piece band playing 70's & 80's music in the cafeteria at lunchtime! Luke got to meet Phoebe while waiting for lab work to be done - she's a standard poodle who was making her own hospital rounds. All in all Luke had a great day. He gave Dr. Grady love "taps" (more like karate chops), but wasn't fond of his two needle sticks at the lab. We had to drive for two hours through a snow and ice storm once we left St. Louis, but had no problems getting home. Thanks again for your prayers & support - we appreciate them more than you'll ever know.

Here in St. Louis

We're safe and sound in St. Louis. Thanks for your prayers, thoughts and support. More to come after Luke's appointment tomorrow.

St. Louis Bound

Luke is recovering quickly from his respiratory infection and will hopefully be headed back to school soon. He's enjoyed ruling the roost at home for the past few days with his Mama. We have an appointment with Dr. Mark Grady in St. Louis the last week in January. Luke will have some non-invasive tests done in the morning then will have a consultation with Dr. Grady and his nurse Ms. Peggy. (Apparently Dr. Grady is now in charge of the pulmonary hypertension clinic at Children's Hospital.) Please pray for safe travel, Tori's stability at home, the wisdom and guidance of Luke's doctor and staff, and our faithfulness to His plan. Continued thanks for the sustenance from your prayers.