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!

Sunday, May 31, 2015

A hard week...

I have tried to update several times this week, but I have literally not had a moment.  Several posts have played through my mind and I haven't been able to get them typed.  Chris lost his father this week and my mom started chemo.  We have been a bit overwhelmed and spread a little too thin.  So this won't be the poetic post I had planned and instead will simply fill you in on the latest.

We have been in the hospital for over two weeks this admission and have been ever so thankful for company!  Friends and family have come to see us.  We were so grateful to see each smiling face.  We have been taken out to eat a few times and brought food a few times and the girls have even been gifted with fun things to do while hanging at the hospital.  We have so very much enjoyed each visitor and treat.

Ty has spent the last week starting new medications to manage his pulmonary hypertension.  We have worked hard to wean him off oxygen as we slowly increase his dose of viagra (Yes, you read that correctly.)  This was supposed to dilate his vessels and relieve the pressure built up headed to the lungs.

It's been a slow process.  We worked our way to almost no oxygen only to add it back.  We added IV diuretics to help him get rid of extra fluid.  We have had some rough days when Ty looked very sick - pale, sweaty, and working so hard to breath and then we have had days when he looked great and was all smiles!  In fact, for the past 4 or 5 days he's been good one day and bad the next, alternating every other day.

We are completely off oxygen and we have anxiously awaited today - Sunday.  Today is the day we would reach our goal dose of the viagra and really see if it was going to help relieve his pulmonary hypertension.  All the ups and downs of the week would be worth it, if by the start of this coming week we saw improvement... and stable sats... and a comfortable Ty.

Saturday evening after visitation at the funeral home with Chris, my friend Anne (who stayed with Ty while Chris and I couldn't be there) called to let me talk to the nurse.  Anne said they had changed the plan and she thought I better check on it.  You can imagine my surprise when the nurse said they had stopped his viagra dose entirely.  I was pretty frustrated because we have been working him up all week and were less than 12 hours away from being at our goal.  So I asked the nurse to have one of the residents call. 

I have to stop here to say that I struggled a lot last week.  I looked to google for hope.  I read up on pediatric pulmonary hypertension and found noting encouraging to speak of.  I tried to give my worries to God... or at least I said I tried.  I prayed, but then I continued to worry.  I let my mind wonder to not so great places.  Places where I wondered what life would be like if we lost our sweet boy.  On the way to the hospital, with K-LOVE (our Christian radio station) cranked up, God laid on my heart that I was looking for hope in the wrong placed.  Why would I go to the internet, or even the doctors for hope, when I could go to the Creator, the Healer, and His Word.  That was a game changer moment for me.  I poured over verses and poured my heart out - out loud - to God.  I gave it all to Him.  Now, I'm not promising in days and weeks to come I won't take my worry back... that's human nature.  I am, however, at least reminded that I can turn around and give it right back to Him.  I have had peace the last couple of days and God has delivered hope in the form of verses and words of encouragement.  He also delivered a new hope in the form of the phone call from the resident last night.

So, back to why they stopped the viagra.  The resident called to explain and offer us a bit of new hope:  The cardiologist on service this weekend came in and looked at Ty and what he has worked on and looked like medically this week.  (All of the cardiologists there are familiar with Ty and his medical history because he has been the topic of cardiac conference 3 out of the last 4 weeks and they have all weighed in (all 20 of them) on possible treatment plans.)  She talked to the attending who has treated him all week and invited him to step back with her and look at the whole picture again.  His echo from this week looks exactly the same as it did upon admission.  We have overloaded him with diuretics and he is still breathing 80 times a minutes.  Her point:  what we are doing, even though we haven't gotten to our goal dose, hasn't made a lick of difference.  We saw minimal improvements on certain days, but stepping back and looking at his trends over the last two weeks - we really haven't made an lasting impact.  So, we take a new approach.  This weekend's cardiology attending specializes in analyzing echocardiograms, so she looked at his most recent echo from a couple days ago and compared it to all his previous echos and his heart cath.  She has a new theory about the way the blood is flowing through his heart and wants to take a closer look during a sedated echo.  If her theory/hunch is correct, Ty may not have pulmonary hypertension.  She has a new idea... a new way of looking.  We are hopeful that this new idea and fresh look at his heart will help us get to the root of what is really going on.  It looks like the coming week will be bringing new tests and hopefully new information.  We have restored hope.

Today Chris will lay his dad to rest.  I didn't have the pleasure of knowing Mr. Hooper for as many years as I would have hoped, but I did know him to be a gentle, kind, and loving man.  He was passionate about his family, history, and his home town of Milton.  He was a great Daddy to Chris and one of the reasons Chris is such a great Daddy to our three littles.  He will be missed.  Please pray for Chris' mom and the entire Hooper family as we all adjust to living without Pap right here with us.  Although we are sad for our own loss, we celebrate that he is in heaven with Jesus - he is pain free, no longer tied to a bed or wheel chair, and he is home.