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!

Saturday, May 9, 2015

Back at it again...

I have been planning to update, but since my last post we were discharged.  It's easy to update the blog at the hospital while Ty sleeps.  It isn't as easy at home when my spare moments are few and far between and filled with things like laundry and dishes and rest, believe it or not!  So here I am to update... from the hospital... again.

After 6 days of NEC rule out from Ty's bloody stools we were discharged!  That was on Wednesday, the 29th.  We were home for a few days and then on Saturday night, May 2 we headed back to Vandy ER because Ty's monitor kept saying his oxygen saturation was in the 80s.  After labs, xrays, and 3 hours of observation it was determined that he was fine and the monitor wasn't reflecting a true reading and needed to be replaced.  Sunday we just managed and on Monday I called the monitor company and they were supposed to bring a solution on Tuesday.  Tuesday they brought new sensors and that didn't fix the problem, so Tuesday night we turned the monitor off because it was alarming constantly.  Wednesday Ty woke up fussy.  All day he was pretty much either sleeping or crying.  When he cried he would get so worked up he would get sweaty.  Chris and I commented a couple times that he was a little off, but then he would have spells where he was alert and looking around and he slept peacefully.  We had cardiac clinic scheduled on Thursday morning, so figured we would ask then if his formula was upsetting his tummy again.  We thought he looked a little pale, but couldn't decide and kind of thought we were over thinking it.  After all, he had been to the pediatrician the day before and checked out great with sats at 95.

 Outside play time with big sis!

On Wednesday, the new monitor that was supposed to arrive hadn't come by7:30 PM, so we called.  There had been a mix up and we had been taken off the delivery list.  They dispatched someone with the monitor to our house and told us it would be after 9:30.  It was almost 10 when it was delivered.  We went to his crib and attached the sensor to his foot and plugged him in.  (Note:  healthy oxegen saturation is 95-100, when you get to the 80s your cells really aren't getting all the oxygen they need, but it is okay for Ty to dip briefly into the upper 80s and return to lower 90s considering his anatomy.)  We waited for the monitor to boot up and to our horror when it came on, Ty was sating in the 70s!  Chris and I went into action.  I threw on clothes and we loaded him in the carseat.  He actually looked okay, but if the monitor was correct, he was in trouble.  We decided I would drive him to the ER in Gallatin, about 15 minutes away, so that they could get him on oxygen if he really was in the 70s.

I was half way down our road when his cry changed to a scary grunt.  I could tell by the sound that he was having trouble breathing, but we live way out in the sticks and there is no phone service, so I was past the point of no return.  I drove as fast as I safely could to the first well lit stopping point that had cell service.  I jumped out and threw open the van door to look at him and he was turning blue and obviously in distress.  I made a judgement call to continue to the hospital because we were only 5 minutes (or less) away and I figured it'd take an ambulance longer than that to get to us.  I practically ran into the ER and was asked to sign in.  I looked at the nurse behind the receptionist and frantically told her he was sating in the 70s and recovering from open heart surgery, we ran back to an exam room and everyone rushed to to get him out of his seat and hooked up to the monitor... he had fallen into the 60s.  They started oxygen and in just a matter of moments and he immediately began to pink up and look more like himself.  In just those short moments, literally less than 5 minutes, Vanderbilt Angel Transport was on the way to get us!

Chris and I had passed the angel transport ambulance a few weeks ago on our way out of the hospital and I had commented, casually, that I sure hoped we'd never need that... and here we were anxiously awaiting it's arrival.

I have nothing to say, but that Vanderbilt has knocked my socks off and I feel so safe with Ty in their care.  Sumner Regional kept Ty stable and as soon as Vanderbilt got there, they went right to work.  Their were 4 lovely medics and they went to work treating Ty right away.  They gave him an IV, catheter to take labs, and replaced all of Gallatin's gear with mini size (appropriate size) stuff.  Then, they loaded Ty up and off we went.  I've never made such good time from Gallatin to Nashville.  They didn't use lights or sirens, but they were moving for sure!

When we arrived at Vanderbilt Children's, we were admitted straight to the PCICU.  As we exited the elevator on the 5th floor I heard a call go out on the radio, "the cardiac patient has arrived."  By the time we got from the elevator door to our room door there were exactly 13 people waiting.  Some might have called the scene chaotic, but I found it all very soothing and a thing of beauty.  Each person had their role and they all worked in sync to get Ty examined and treated and settled in.  They immediately did an xray at the bedside and determined that he had pneumonia.

Around 3 AM, after Ty had started meds and was stable and settled in, I laid down.  A few short hours later at rounds I was handed quite a surprise.  In just that short time and closer look at Ty, they had decided pneumonia was less likely (he had no other symptoms) and it looked more as if he was in heart failure.  Over the next 24 hours opinions differed on Ty.  Everyone was a bit perplexed.  Some felt heart failure was the answer, others thought pulmonary hypertension.  The problem is that the treatment for each of those issues would complicate the other diagnosis if they were wrong.  It was decided he needed a heart cath for a closer look.

Ty's heart cath procedure went well and confirmed that we are in heart failure.  On 100% oxygen, Ty has 7 times more blood going to his lungs than the rest of his body.  This is less pronounced on room air, but still happening.  There is way too much blood shunting to the right side of his heart through the hole.  It causes his heart to becoming enlarged and for too much pressure and flow to his lungs causing them to get too saturated.  The decision has been made to medically treat the syptoms and try to get Ty fully recovered from open heart surgery #1 and this event and then to go ahead and have open heart surgery #2.

Our surgeon came to speak with me this morning.  He was pulling his own two little girls around with him in a wagon as he checked on his patients.  He told me that with Ty's anatomy, he should have been able to go home and be healthy with his unrepaired AVSD for at least 2 or 3 years.  Unfortunately, he said about once a year they have a baby that reacts as Ty does and needs the repair much much sooner.  If they can get his heart back to a reasonable size and manage his heart failure with medication we will take him home for an estimated 4-6 weeks.  Dr. Mettler said it could be this hospitialization, a few weeks, or (not likely) but a few months.  It all depends on how Ty does with his medication.  The bigger and stronger he gets the better off he will be to go into his second ohs.

So, for now, we are camped out int he PCICU.  He is off his vapotherm and doing well.  We may resume feeding at some point today and work on finding the right balance of medication to make sure his heart and body are in good shape to go up to the 7th floor and, Lord willing, eventually home.  Please continue to pray for our little guy!  We feel so blessed to have him here - he is such a fighter.