TYSON MATTHEW KOTTELENBERG


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

This blog is about our eight 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!

Day Three Post-Glenn - Friday, May 15, 2009

" Listen to my cry for help,
my King and my God,
for to you I pray.
In the morning, O LORD, you hear my voice;
in the morning I lay my requests before you
and wait in expectation."
Psalm 5: 2-3
Another day of waiting. The settings on the ventilator were turned down a great deal overnight and it is now on one of the lowest settings possible, called CPAP mode. This basically just gives Tyson pressure support while breathing. Tyson is breathing on his own but the machine is just keeping his lungs open a little, preventing them from totally deflating so it's easier for him to take the next breath. This is the final step before extubation. However they will not be extubating in the next day or two until they can figure out why his sats remain in the low 60's.
An echocradiogram (ultrasound of his heart) was done this afternoon. They did what's called a "bubble study" which involved making bubbles in a syringe full of saline solution, and injecting these bubbles into the central line in Tyson's neck (the central line goes directly to his heart). The injected bubbles can be seen on the screen of the echo monitor. This tells the doctor where and how the blood is flowing by following where the bubbles go. The cardiologist said that from the echo report, there appears to be good "Glenn blood flow" (blood flowing from the superior vena cava to the pulmonary artery, which is what they connected during surgery) but he also said that they've been fooled by the bubble study before. Sometimes there can still be blood escaping elsewhere in the heart from another vessel, which could be causing the low sats.
The only way to know for sure if there is blood escaping where it shouldn't be going, is to do a heart catheterization. The cardiologist is a little hesitant to opt for this immediately since it is a very invasive procedure involving general anasthetic and intubation (well, he already is intubated! LOL)
So the short term plan is to wait for tomorrow's chest x-ray and see how the right lung collapse is healing. Once the right lung is 100% repaired, if the sats do not improve, then they know for sure that the low sats is NOT a lung issue but a heart issue. Then a heart cath will be done. So there will be no extubation unless the lung is 100% repaired and the sats go up. If the lung repairs but the sats remain low, Tyson will stay intubated since he would need the machine during the heart cath anyway.
Low sats are not harmful for the short term, so waiting a few days before doing a heart cath is not a big deal. However, in the long-term it can cause damage to the brain because the brain will not be getting enough oxygen. So this needs to be figured out.
So Tyson will be staying in Intensive Care for a while yet, until they can get this mystery solved.
Please keep praying that the Great Physician can help Tyson's other physicians figure out what is wrong.
Mel:)

2 comments:

Mel said...

Hope you are holding up alright in the face of all of the "unknowns." Remember that you can do all things through Christ, who gives strength. (Just keep singing the song...) We definitely will keep praying. Love you!
Jay, Mel, Jaidynn and Mikayla

Anonymous said...

Hi Brian and Mel:
We are definitely praying for you every day and also reading with interest all your notes; thanks!! May God give you everything you need every moment of the day!
And I have to say you sound very intelligent writing all this medical stuff; to say you(and us too..) have learned a lot about how a heart works would be an understatement, eh?
Take care,
Love,
MaryLynne and Henk