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!

Friday, April 3, 2015

Post Surgery Update: Days 9 and 10

Here are a couple of pre-op photos:

Yesterday at around 8:00 the anesthesia team showed up at our NICU door to get Ty ready to head up to the operating room.  Chris and I were much calmer than I thought we'd be.  Over the previous 24 hours we had seen Ty begin to struggle a little.  His respiration was too high and his little heart was just having to work too hard.  He was just sleeping non stop, not even cracking and eye to eat.  We could just tell that it was time.  He needed his surgery to happen.  It was a couple hours before surgery actually began.  They got him started on anesthesia, cooled him down to slow everything, and then began.  The first incision was made about 10 minutes after 10 and by 11:30 they had stopped his heart and had him on the heart and lung bypass machine.  At about 1:00 we got a call that his aorta had been repaired.  Dr. Mettler said he spent about 20 minutes looking at his AVSD to see if he could get it too and eliminate the need for a second open heart surgery.  He was as disappointed as we were when he told us he just didn't feel comfortable doing it.  He said the tissue he needed to anchor the patch was just too thin and he didn't want it to fall apart and create more problems and a more complicated surgery later.  He felt like the risk of tearing an additional hole outweighed the risks involved in a second surgery and we trust his judgement.  At 3:00 they were finished and we got to talk to Dr. Mettler, but it was after 5:30 before we were able to go back and see our little guy!  

Here are his post-op photos:

This morning at rounds they said he had "kind of a rough night" but nothing unexpected.  He was a bit puffy this morning and has continued to puff up throughout the day.  This is a normal inflammatory response.  He is on lasix to help him pee of fluid.  They really would like to see him peeing a lot more than he is, so we are now asking everyone to pray for lots and lots of pee!  His blood pressures have been good all day and his anesthesia is worn off.  He is doped up on morphine, so he isn't in any pain and we are just waiting for him to get rid of the excess fluid before much else can progress.  We had hoped to wean from the ventilator today, but it doesn't look that like will happen just yet - gotta deal with the fluid first.  I have caught him (on the monitor) taking a couple of breaths on his own, so that's a start.  He also cracked an eye at us this morning.  Right now we just need lots of pee, to continue to be stable, and for his little body to "rest and get used to the new plumbing."

Because his AVSD couldn't be repaired at this surgery, we'll be planning a second open heart surgery around age 2 or 3.  For now, Chris and I are trying to focus on one day at a time... healing from this one and hoping for a day soon when we can take our baby boy home!

Thank you for continued prayers and support.  I have many many many thank you notes to write - please know they are coming, but I just haven't been able to focus on anything but our little guy at the moment.