Tyson Hugh Hooper

Tyson Hugh Hooper
Our son, Tyson Hugh Hooper, was born with coarctation of the aorta, hypoplastic arch, and a transitional avsd. His first open heart surgery reconstructed his aorta and was on day 9 of life. His second open heart repair was not anticipated to be needed until two or three years of age. Ty had other plans. We spent the vast majority of his first 3 months of life at Vanderbilt as he went into heart failure and was diagnosed with pulmonary hypertension. As a result, the medical team concluded that he needed the repair much sooner than usually recommended, and at just shy of 3 months old Ty underwent his second life saving open heart surgery. God has already worked so many miracles in Ty's life and the life of our family and we know he is using our story. Because of this, we are grateful for Ty's special heart and feel beyond blessed that God chose us to travel this road. We ask for prayers as Ty continues to heal. We are praying for a full recovery and life without restrictions for Ty. We are praying for God to use our family and Ty for His glory.

Thank you to each and every person who supports us through prayer, giving, or just by loving on our family! We are humbled and blessed by all of the ways the Lord is providing for us and know that he is using Ty and his story to do great things!

Tuesday, March 5, 2013

A warm welcome and chilly day in Cincinnati

 We are well overdue for an update on Ava Grace's port wine stain (PWS) and today seems like the perfect day to update since she had her second treatment yesterday!
(Toy bag waiting for Ava Grace when we arrived in Cincinnati)

We have really been round and round with the insurance company in the months between her last treatment and today.  Although they do not require pre-approval, they denied to pay for Ava Grace's first surgery.  Actually, they paid everyone except for our plastic surgeon.  We appealed and they continued to deny.  Basically their policy states that until she is having painful symptoms and negative side effects from her PWS, surgery is considered cosmetic.  So, until she is suffering from painful nodules, bleeding spots, and impaired vision (among other painful and life changing symptoms), Cigna won't help her.  There are many problems with this - the big one being that by the time a PWS patient has reached that point, laser removal is no longer nearly as effective!

(Pre-op appointment... 
blood pressure - check
heart rate - check
gold fish - double check!)

After the disturbing news and ensuing back and forth with Cigna, we were very discouraged and looking at having to save, beg, borrow, and fund raise to pay for her remaining treatments out of pocket.  That was until, a friend of ours approached Chris at work and suggested he contact the Shriner's hospital in Cincinnati.

(View of downtown Cincinnati from our hotel room)

I didn't know anything about the Shriners or what they do, but I placed that call.  I still am in awe of the conversation that followed.  It was a 3 minute phone call.  The gentleman on the other end of the line introduced himself.  He asked for Ava Grace's name and birthday and for my name and Chris' names and our birth dates.  He asked me to share with him why I was calling.  I stated that Ava Grace had a PWS and that insurance was not going to cover her treatment.  He then said that they have doctors that would love to help us and cover all of her treatment for free.  That was it.  No qualifications.  No forms or applications.  Just this:  You have a child with medical needs and we have a doctor that can help. done.

(leaving for surgery: 6:00 AM)

The Shriners have 22 hospitals across the country, specializing in different things.  We had to go to Cincinnati to their hospital there.  They are a burn center, but they also treat kids with PWS, cleft lip and palate, and other reconstructive/plastic surgery type needs. We went in January for our pre-op assessment and to meet our surgeon and schedule our first treatment with them.  We were told at that time that they will take care of all of Ava Grace's needs related to her PWS for free.  They will track her development and any follow-up treatment will be taken care of by them until she reaches age 21.  We were, again, in awe.  To add to the incredible services the Shriners are providing, we were told that accommodations are also taken care of and if we need transpiration, they will drive us there as well.

 (Morning of surgery - outside of our hospital room)

That brings us to this past weekend.  Chris stayed back to take care of Lily and Ava Grace, my dad, and I headed to Cincinnati on Sunday.  We went for a pre-op evaluation and they showed us around!  That place is nothing short of magical, with playrooms and libraries and family areas.  Each child gets a VERY large room for them and their family.  They had toys waiting for her to play with and keep.  It was great!  They checked her out and prepared us for how the next morning would go and gave us instructions for getting her ready in the morning.

I think the hardest part, by far, was not eating!  She couldn't have anything after midnight - and this girl really enjoys breakfast!  They had a room reserved for us at the Radison overlooking the river.  We tried to get a good night's rest and then headed back to the hospital bright and early Monday morning for surgery.

We had to be there at 6:30, but surgery wasn't until 8:30, so it was quite a task keeping her distracted from her hunger.  They had her little hospital gown and toys ready for her when we arrived.  She spent a lot of time playing and visiting with the nurses and her Papaw.  Every nurse on the floor spent time in our room or hanging around our door - Ava Grace was a HUGE hit and they all just went on and on about how cute she was and how they couldn't believe she was walking so well and so verbal at such a young age!  You know this Mama was proud!  

She finally got too hungry to care about toys and exploring, so the nurses took her for a walk and passed her around the nursing station and as one of them was holding her, she fell asleep!  It was great!  The doctor came to get us and she was already taking a nap, so we walked with her to the operating room doors, kissed her on her sweet sleeping face, and walked away.  (That's the hard part!)

Thankfully, the procedure doesn't take long and they only put her under with a mask for a short a time as possible.  Less than 20 minutes later we were being paged.  The recovery nurse called to tell us that she woke up immediately and was straight up mad and she needed her mama!  We met her back in our room and gave her some juice and yogurt! 

(playing before surgery)

(after surgery, eating yogurt)

We hung around for a little bit to make sure she was fully alert and was walking and jabbering normally.  She seemed back to herself and checked out great, so we were allowed to leave around 10:30.

Our nurses were wonderful!  Actually everyone there was wonderful - it was such a positive experience.  Ava Grace did so great!  Dr. Kitzmiller felt like he got good results and no over-lasering, so no blisters!

Everyone always asks if it hurts.  It doesn't hurt during the procedure because she is asleep and she gets a mega-dose of tylenol before to help with pain after.  For 24 hours, the lasered area feels like a mild sunburn. After that, no pain at all!

Here she is this morning!  Her usual happy self, rip-roaring and ready to go!

We will return to Cincinnati in June for her third treatment.  I am already looking forward to another great experience.  My new charity of choice - the Shriners and the incredible work they do to provide for the needs of children!  


Sarah said...

I'm so glad you posted this!Enjoyed the inside look and the details of your visit. It was truly an amazing place! I was highly impressed when I went with you in January for the consultation. They should make "grown up" hospitals just as cozy and welcoming!
I'll be stopping and donating EVERYTIME I see the Shriners taking donations from now on!

Allyson said...

Wow. Just WOW!! What an amazing answer to prayer! I had no idea how awesome this charity was! By the way--I LOVE the last picture!