FRAGILE (And update on Mason's rod expansion surgery)

First of all, Mason's rod expansion surgery went very well today. The hardest part of the day was saying goodbye to him as the anesthesiologist walked off with him to the OR. He got more upset than he normally does, which then caused my eyes to fill with tears as well. He is such a tough little guy who has been through so much, that sometimes I forget how still very FRAGILE and tender hearted he truly is. I will say also that because of a sad event that took place with one of Mason's heart transplant friends (Mia, who I will talk about below) last week while in the cath lab, I was extremely nervous to send him to the OR today.

Mason was in the OR for about an hour and a half. It took at least half the time just to place his IV, He is a very hard poke! He has recovered remarkably well. He is on just a half a liter of O2, which is pretty normal for him after anesthesia and intubation. He is also on lortab for pain and zofran for nausea. His incision is about 2 inches long on his mid-back right in between the 2 incisions made to implant the rods in April. His rods were were extended about one centimeter each in length. If he continues to do well (shh, don't want to jinx myself) he will get to go home tomorrow. Before we go home he will be getting his IVIg infusion that was due 2 weeks ago. I asked the Hemoc doctor if we could push it back until this week so we could use the IV Mason would have from the surgery, because his IV access is so difficult. He's a super hero, with a beautiful gifted strong healthy heart, in yet a FRAGILE body. 

As a Heart Mom I have also learned first hand how very FRAGILE life is, especially for a child born with a CHD (congenital heart disease). Their spirits are strong, but their bodies are delicate and FRAGILE. Their lives are delicate and FRAGILE. This weekend was a hard weekend to be a Heart Mom. Very hard! In fact heart breaking! Some of these beautiful, but oh so FRAGILE special heart children are just "too pure, too lovely, to live on earth" anymore and are called home to Heaven. My heart is heavy as 2 of our Utah heart friends have earned their angel wings and returned home to our Father Above. I am sad for their loved ones. I am sad because they are part of our heart hero family! I am sad! I am nervous! I am scared! I am scared for my Mason for I can't help but ask myself how long will I get to keep him here on earth?! 

I am grateful more than anything to know that families are forever! These heart angels WILL reunite with their families again someday! And Heaven is definitely sweeter now with these 2 new angels.

Shakeara was born 23 years ago with a CHD. We met her last year at Primary Children's where she was being treated for heart failure and liver problems. I feel lucky to have met such a beautiful young adult heart hero. She surpassed by far all medical expectations! I know her sweet husband and family feel a void without her now, but are grateful she is pain free. Please pray for their comfort at this time. Go here to read more: Shakear's Obituary.

Shakeara

Mia is a beautiful 4 year old who was born with a CHD and at 4 months old received a heart transplant. Last week she flew with her family to Disney World for her Make-A-Wish gift. But, before she even got to see Mickey and Minnie she ended up in the hospital very ill. What her parents and the doctors thought was a possible pneumonia turned out to be severe rejection and heart failure. She was taken into the cath lab for a heart biopsy  to determine the severity of  her rejection where she suffered cardiac arrest. She came out on ECMO (heart and lung ) life support. It was later discovered that she had no brain function. Mia's family had to say goodbye very unexpectedly. Within 3 days she went from what seemed to be very healthy to returning HOME. Life is so very FRAGILE! Please pray for sweet Mia's family. Click here for her story on KSL. And here for her blog.

Mia

Please hold your loved ones a little closer and hug them a little tighter! Tell them you love them! For life is FRAGILE! We never know what tomorrow brings.

“Even if you cannot always see that silver lining on your clouds, God can, for He is the very source of the light you seek. He does love you, and He knows your fears. He hears your prayers. He is your Heavenly Father, and surely He matches with His own the tears His children shed.” 

~Jeffrey R. Holland