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, June 14, 2015

Home was good while it lasted...

A week ago tomorrow we were discharged.  We were a little anxious after another extended admission to reboot and try home again.  On discharge the attending cardiologist said it was a 50-50 shot that we'd got home and stay home for the full 3 weeks, but it was "worth a shot."  We were told, "even if you only get a few days out of it, it'll be worth it.  If you end up needing to come back, you know the way."  So, home we went on Monday afternoon.  I have to say, the days we got at home were the most enjoyable and relaxing we have had at home with Ty.  We were a little more comfortable this time because we now have seen what Ty looks like on the decline and were a bit more confident that we would recognize problems before they got too bad.  Monday afternoon and night were uneventful and we so enjoyed being together as a family of 5!  Tuesday was another enjoyable and uneventful day, as far as Ty.  His sats were good, his heart rate great, and his breathing was too fast for him to try to take any milk in a bottle, but not so fast to cause alarm.  He had some retching and moments of being pale and sweaty, but hey, we know he is in heart failure, so not looking 100% all the time is kind of expected.  Tuesday night Mimi came to spend the night with us so that that Wednesday morning we could take Ty in for his first cardiac clinic appointment and the girls could stay home and play.  It was a great day and a pretty good check up.  Ty was sweaty, pale, and breathing fast during his appointment, but our wonderful cardiologist confirmed that these were signs of his heart failure that we expected... the goal was to maintain.  The rest of Wednesday was a really good day.

(Happy at home)

(Hooper home pharmacy - and this doesn't include what's in the refrigerator! #heartfailure)

(Good morning snuggles... don't judge, we're a paci lovin' bunch)

Wednesday night is when things changed a bit.  Over the course of the night the monitor went of just a few more times than it had the two nights before.  No major desaturations, but dipping to the lowest end of his goal and then coming back up subtle changes.  Thursday morning I rolled over in bed to look at Ty sleeping in the bassinet next to our bed - I checked his respiration (we periodically do this all day) and he was breathing 102 times a minute.  I made a mental note to watch him carefully, subtle changes.  His sats were on the low end of his goal as well... floating around 90-93 as opposed to 95 or higher where he had been, this is okay for him to be at, but it's another subtle change.  Chris had noticed too and we commented to each other that our time at home better be enjoyed while it was lasting.  

(More snuggles)

Thursday was a great day.  Ty was happy and smiling, not fussy.  His respiration was again too high to take any by mouth and he retched a couple of times in the morning.  He was really sweaty, but it came and went more or less.  I caught him breathing over 100 times a minute a few times during the day and noticed that he wasn't getting lower than 75 times a minute even at rest.  I knew we were headed down a familiar path, but wagered that we might get another day or two out of our stay if we were lucky... or at least one more night at home.

 (Found my fingers - love to lick 'em)

Thursday later afternoon, the girls and I were hanging out on the back deck playing with the water and sand table when Chris came to the door and asked me to come in.  I knew immediately he was concerned about Ty.  He had retched again and then turned very gray.  We took him out of his bouncy seat and laid him flat on a blanket and Chris went to get the pulse ox.  He was sating in the high 80s and we decided to give him some time to recover, so I went back out with the girls.  Ty fell asleep and we periodically checked his sats and respiration to see if he could recover on his own.  After an hour or so he hadn't improved and actually started sinking lower and lower into the low 80s, even throwing a reading in the 70s a couple of times, so we called our cardiac clinic nurse.  I was already packing my bag when she called back - we were asked to bring Ty back to the ER.

Upon arrival to the ER, Ty appeared happy as always and smiled at each person that came in.  He passed his EKG, his chest x-ray looked good, and his sats had recovered back into the 90s.  His respiration was still elevated, but not in the 100s.  The one thing that had changed pretty dramatically was his BNP (indication of heart failure).  We had gotten his BNP down to the 50s on our last discharge and when his labs came back at the ER, his BNP was back up to 385.  That's a big jump in just a few short days.  They decided they better admit us for overnight observation.  I was still holding hope that we just jumped the gun and he was actually doing fine.

We got up to our room on the floor after dark.  He settled into a good sleep and I headed to get something to eat.  When I got back I got in some snuggles and then after 10 or so, I laid down to get some rest.  Ty's monitor kept going off as his sats dipped just below 88 (his goal).  They came in and dropped his goal to 85 and we continued to keep an eye on him.  In another hour or so the monitor started going off as he dropped just below his new goal of 85.  Before long he was setting off the red alarm as he flirted with the 70s... time for oxygen.  He got about 10 hours of low dose oxygen and then weened back to room air.  After his shot of o2 he maintained sats in the low 90s and his respiration settled out.  Friday he had a great day with really good respiration rates and decent sats.  They decided to adjust his feeds some, run a virus panel, and observe through the weekend - we'd either see a new man on Monday or we'd decide we need to stay until surgery (in which case they'll likely move surgery up).  Saturday was perplexing,  Mom and Sarah came to spend the day at the hospital and saw first hand how our little guy stumps everyone.  He had slower respiration, but was sating in the low 90s slowly dipping into the 80s.  Then we gave him a bath and the next thing I knew he was sating 100 - absolutely perfect!!  Then the nurse came in and he was breathing over 100 times a minute.  Now, it's Sunday and his respiration has settled into the 60s and 70s (not too bad for him) and his sats have stayed above 95 all morning.  The attending wants to observe one more day before we make the call.  So for today and tonight we are at the hospital, waiting and watching.  Who knows what this next week holds - it could literally be anything between snuggles at home with our little guy to an expedited open heart surgery.

 (Having Sarah and Mama here was good for my soul!)

One of the valuable lessons I have learned through this experience is to take life one day, sometimes just one moment, at a time.  I can't plan ahead for days or weeks or months.  This has been a hard lesson for me.  Living in the moment is sometimes an unsettling feeling, but it is also very liberating.  It actually feels really good to just lean on God and let him do the planning.  So, today I leave you with two verses that I have held on to over the past months and that have truly developed meaning to me as I have had to trust these verses more deeply than ever before:


Teresa Mason said...

Ya'll are such an inspiration! Thanks for the awesome verses! Ya'll are continually in my prayers!

Shirley said...

Ty is so cute, he's a heart stealer for sure! I continue to pray for him and for your mom. May God also give you the strength and wisdom you need as you face all these trials in your life.

Lisa Murphy said...

My heart goes out to you and your family. I am inspired by you and your mother and appreciate the sharing of your journeys. Know that you all are on numerous prayer lists.