"The Lord is faithful to all His promises, and loving toward all He has made." Psalm 145: 13b

This blog is about our nine year old son Tyson. Tyson was born with serious complex congenital heart defects, (Hypoplastic Right Ventricle, Tricuspid Atresia, Coarctation of Aorta, Transposed Great Arteries, with VSD and ASD.)
In short, the right side of his heart is completely under-developed (he has half a heart,) his main arteries are mixed up, and his aorta is narrow. He has undergone 3 open-heart surgeries and 5 heart cath procedures to try to 'repair' his heart. Sadly, Tyson has also been diagnosed with pulmonary vein stenosis, a fatal disease in the veins of his left lung. Typically, having the 3 palliative surgeries buys children with single ventricle hearts many years before eventually needing a transplant. But because of the narrow pulmonary veins, this increase in pressure is causing his blood to shunt the opposite way across his Fontan fenestration and surgeons are not able to close the fenestration. As a result, he remains on coumadin and is heading down the transplant road faster than we'd originally anticipated. He's still doing AMAZINGLY well all things considered. We entrust our dear son into the hands of God, knowing that in all things God works for the good of those who love Him!

Wednesday, March 22, 2011

Playing hockey in the halls with Grandpa Spanninga while Grandma Spanninga chases after him with his O2 tank. (Check out his new scrubs from them :)

Tyson doing his "goalie pose"

"For the LORD God is a sun and shield;
the LORD bestows favour and honour;
no good thing does He withhold
from those whose walk ...is blameless.
LORD Almighty,
blessed is the one who trusts in You."
Psalm 84: 11 & 12
I am happy to report that the end is FINALLY in sight! Tyson had a very good night; the nurse didn't need to do any vitals overnight because they're now ordered q12 hours, and Tyson didn't de-sat all night long. So we both slept like rocks...snoring included. (Tyson, not me:D )

When Tyson awoke his sats were in the low 80s!! Yay! So the O2 was turned down to 2.0 litres and then he spent all morning in the playroom. We didn't hook him up to the portable sats monitor during this time (because it's very difficult for me to chase after him with both an O2 tank and the portable monitor.) When we got back to his room after running around for a few hours, we hooked him back up to the sats monitor, and his sats were mid 80s,(!) so we turned his O2 down to 1.5 and he did very well. Then after lunch he was satting 90-92 (which is actually too high for Tyson because of his heart) so I took the liberty to turn it down again to 1.25 as the nurse was busy with other patients. He is now napping (when he sats lower) but he is still in the high 70s, 77-79 :) I assume that when he wakes we can crank it down to 1.0 litres, and maybe leave it there till tomorrow? If all goes well he could very well be off his O2 by tomorrow afternoon?? So I am excited because home is finally in the near future :) *smiles and sighs of relief*

Tyson had a really good day yesterday as far as his fluid intake. His minimum TFI (total fluid intake) is supposed to between 800-900 mls and he drank almost a full litre! He is heading in that direction for today too. When he is up out of bed and burning off energy, he is definitely needing more fluid.

As of tomorrow, Tyson will have been here longer for this Influenza than he was for his Fontan surgery, and he was in CCCU twice as long for the Influenza than for his Fontan. This just shows how a simple bug can completely wipe him out. Can we say "flu shot next year?" :)

Tyson and I both are enjoying another day with company. Brian's parents came down with my Mom and Kenya, and now Mom Spanninga is staying here till this evening when my Dad will be here too.

Thanks for checking in on Tyson! Keep praying as he continues to be weaned off the O2. We would LOVE to be home for the weekend! God is so good!

Trying to find the hockey game...

Wearing his new scrubs from
Grandpa and Grandma


Tanya said...

Awesome!! We will definitely keep praying. (BTW - so cute listening to Kate pray for Ty at lunch today :) We really hope we get to see you this weekend!! T

Mel said...

Hurray! Yay! Awesome!! GO TY!!!!

Anonymous said...

Wonderful news! Was so hoping I could come to visit today ... but alas, it was a snow day and the girls were home. Unfortunately, It was my only day this week. We pray that Tyson will continue to progress and that you will indeed be home by the weekend. Thinking of you and praying for you often!

Marg K (from G)

Joanneke said...

Wow! We are so thankful with you that Tyson is finally picking up,and you can have the "old Tyson" back again! What a relief!! Praying it will continue to go well so you can go home soon.

Mel said...

The scrubs are ADORABLE!!!!!!!!

Tanya said...

Thanks for adding the pictures! He looks so good and yes the scrubs are super cute!! T

Anonymous said...

did you get a pair too?

Sara said...

Where did they get those scrubs! They are so cute! We got the flu shot a couple of years ago (all 6 of us) and within 3 hours of getting it we were super sick for a week. We have never been that sick since and have not gotten the flu shot again...hope it wouldn't make him feel worse. So praying that he is healthy soon and stays that way! :-)

Alida said...

Adorable scrubs - he's certainly earned them by now! Glad to hear things are looking good!