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!

On the home-stretch

It was another good day!  Dr Murphy turned the oxygen off at about 10am and it's been off ever since!  I was a little freaked and stressed right before I left to go home this evening, as Tyson's sats dropped to the 70s for about 20 minutes.  We fidgeted with his sats probe (the one that attaches to his finger) and the nurse brought us a brand new one and that seemed to make a bit of a difference.  They slowly began to climb back up.  Brian just texted me and said they are staying around 84 right now.  I am hopeful that they will remain in the 80s for the whole night, because that means he can go home in the morning!  During his nap this afternoon the sats were steady at 83-84.

His INR level is slowly climbing back up (1.8 this morning) and his weight is slowly going back down again (15.2 kg...closer to his normal weight again.)  He is still coughing but it is loosening up and not sounding as severe. 

This morning when Dr Murphy came in to assess Tyson, I asked him straight-up what he thought the lower sats and cough are a result of:  lung infection or heart failure.  I told him to tell me his honest opinion based on his understanding of all the tests so far.  He believes that the infection is what caused the lower sats and cough, and that the infection also could have caused his INR level to be way off.  

Tyson's chest x-ray from this morning showed a big improvement but there is still a fair amount of fluid there, particularly in the right lung.  Dr Murphy said that if it was heart failure the fluid would be on both sides of his chest.  However, having to work hard to fight the infection, his heart was definitely put under stress and that could be why his belly became distended and his body retained the fluids.  But Dr Murphy was also clear that he is concerned about the low protein levels in Tyson's blood (albumin levels) and that this could a slow start to something called Protein Losing Enteropothy (PLE.) It is a common side-effect in children who've had the Fontan (primarily in those who've had a fenestration closure - Tyson's is still open) that causes the body to lose proteins.  It results in a very hard, distended stomache, very loose stools, and requires a very strict diet to manage the symptoms.  It is a very inconvenient disease with absolutely no known cure.  I'm not letting my mind get too far ahead on this, since Tyson's protein levels are low but not dangerously low.  Perhaps there is something we can do to slow down decrease in albumin levels? 

The cardiology clinic from Sick Kids called today.  Tyson's ECHO is scheduled for 10:30am on Wednesday June 27.  He will also have bloodwork again (INR level, albumin, white blood cells, hemoglobin) as well as chest x-rays, and ECG, and an appointment with Dr McCrindle.  The ECHO is the most important test at this time.  This will tell us if Tyson's heart function has decreased over the last 3 months and will let us know if he needs to continue with the heart meds.   We will be taking with us a disc with Tyson's recent x-rays on it, as well as all the lab results of the past few days.  Hopefully we can get this all figured out and put all the pieces together.

So if all goes well overnight tonight, my next blog post might be announcing that Tyson is home!  Please pray for this for him. 

1 comment:

Anonymous said...

Praying all goes well and you get to come home TODAY!!
Lea and Derek