It was so easy to take for granted… if I do everything right I will have a healthy baby. As we soon found out this is not true, Marshall was diagnosed at birth with congenital heart disease. ‘The Mars Effect,’ we found, is a complex constellation of defects and rare anomalies that seem to defy typical description. Where did this kid come from?! His constellation of heart defects include Hypoplastic Left Heart Syndrome, Total Anomalous Pulmonary Venous Return, Pulmonary Stenosis, Double Outlet Right Ventricle, and there’s more. Check out the What is the Mars Effect? tab above for descriptions. Sounds simple enough, congenital heart defect… Many people survive with CHD without any medical intervention. Others do quite well with surgical procedures to repair.
We received Marshall’s travel package Monday night for his Make-a-Wish trip to play on the beach with Gramma and Grandpa. We are set to fly out of Pittsburgh Monday afternoon and arrive in Orlando just 2 hours later! Make-a-Wish has equipped us with everything we need for a week full of fun! They gave us 6 free passes to Lego Land and all of our travel and food expenses and money for Marshall to shop at the famous Ron Jon Surf Shop on Cocoa Beach. With all the arrangements in place i.e, Wyatt’s pre-approved absence from school, dog boarding, Gramma Marsha’s respite care for her foster lady, and of course Big Daddy Joe’s long anticipated paid vacation we are suuuuupeer excited to get on our way.
Only yesterday after confirming the flight plans with Marshall’s cardiologist did I discover he is required to wear oxygen while in flight. As an airplane cabin is pressurized to 8000 ft. So now I begin the rushed and frantic search for a way to have a Portable Oxygen Concentrator available for him to use. Making calls at 10:30 last night to Southwest Airlines to notify them of our “special needs”. 7:30 am calling Oxygen2Go in Wyoming (so this gentleman is working at 5:30am) to get all the details about cost and equipment. Let’s hope my call to Make-a-Wish this morning will be fruitful as the cost to rent this handy piece of equipment will be somewhere in the $600-$700 range for the week.
My first experience traveling by plane with a Fontan patient has already proved to be extraordinary! But, all this will be a faded memory when I see that million dollar smile on Marshall’s face as he builds his sand castles and collects seashells, and rolls in the sand of Coca Beach at night.
Though he has an interesting way of showing his excitement….
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Marshall celebrated his first last day of school today :) He told his teachers his favorite things about school this year were learning the letter “P” and dancing. Next year
Mars is 11 months post-op and we just got home from his cardiology check-up. I was expecting him to have bloodwork, EKG, and a holter monitor in addition to his echo. But he got away with just an echo. I was a little disheartened by the echo report. Dr. K, who is now Dr. M, reports his valve leakage has increased from mild to mild/moderate and heart function not quite as strong as his last echo. I was expecting to come out of there with a glowing report so I’m feeling a bit like getting punched in the stomach.
On a happier note, Marshall has grown a whole lot with his height now on the growth charts at a whopping 8th percentile! He’s grown almost 3 inches in the past 6 months!
Mars goes back up in 6 months just after his tentative Make-A-Wish trip to Florida.
It’s a beautiful day in Southwestern PA and Mr. Marshall has t-ball practice this evening.
It’s been so long since I’ve updated. I guess that shows how well Mars is doing these days. He’s in preschool with kids his age, learning, and playing, and enjoying life. It’s just amazing to me that 9 months ago I was scared to death my sweet little boy would never recover. That he would be traumatized forever by the battles he was fighting in the hospital. And now, he’s side by side with other 4 year olds and you would never guess the mountains he’s climbed and the resilience he’s shown. Here is a picture of a note from his teacher that was attached to his first report card❤
We are just so proud of him! So very thankful to have him in our life… God bless.
Marshall had his cardiology check up today. He did GREAT, his oxygen sats read 97, 98. Dr. K thinks his fenestration is now closed. This happens if the pressures in his heart are low enough and blood isn’t being shunted through the fenestration. It’s good news as long as he doesn’t develop any effusions. So far it looks like he’s tolerating just fine. If he needs his fenestration in the future they can make one and put a stent in via cardiac catheter but hopefully that won’t be necessary. He’s has grown over an inch and gained 2 lbs since our last visit in June… Whoa! I thought he looked bigger!!! So he won’t need a checkup again for six months. At which time he will get the whole shebang; EKG, echo, blood work, and a new test called a holter monitor. I’m not sure exactly what this entails I think it’s like an EKG he has to wear for 24 hrs. He will now have this done yearly for life. I remember reading stories about single vent kids wearing these to school… Looks like Mars will be an ol pro at this test as well. We are very happy Marshall has completed his journey of the treacherous terrain known as Mt. Fontan, now life continues with all the strength and wisdom he’s acquired on this trek. Thanks for reading and God Bless!!
Eating cafeteria cake yummm
Marshall is getting quite hep to his chest scar and realizing that most people don’t have a “zipper” like he does. He knows Uncle Bill and Gammy both have chest scars but I felt like I needed to explain to him where his came from. It was affecting to see the way he listened when I told him he needed his heart fixed as soon as he was born. And, that he was born with HLHS. This isn’t the first time I’ve told him, as we talked about everything he went through in order to prepare for the Fontan. But, this time he was really listening… For our family, we’re used to little kids having a giant scar down their chest, in fact it looks quite strange to me to see a kid Marshall’s size without one! But when we see all the other kids at the pool and swimming lessons it’s easy to see the magnitude of what he’s been through. I tell him all the time there are lots of kids out there that are just like him and have been through the operations like him. Draven, Luka, Zoe, Megan, Simon, Cameron, Evan, and lots of other boys and girls who have HLHS. I know he doesn’t comprehend everything I’m saying to him but I know he will be well versed in his heart condition. Marshall continues to amaze me everyday with his strong will, it’s absolutely unprecedented. God bless.