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!

Admitted to Headwaters

Tyson has been admitted to Headwaters Hospital, our local hospital in Orangeville.  He's been fighting a bad cough, along with irritability and decreased energy levels, and his O2 sats have been in the 70s the last few nights as he sleeps.  They've been stable at low 80s when active, which is ok but not wonderful.  Usually when the sats drop so much at night, it means his lungs are full of fluid and he's fighting pneumonia.  I took him in to our family doctor today who is always so willing to squeeze him in every time I call.  He was concerned about the lower sats at nights, but also found an ear infection.  He said there's no real way of knowing it's pneumonia unless he has a chest x-ray.  Sometimes an ear infection can aggravate the asthma which could be a reason for low sats.  But he wanted me to call Sick Kids and run all the details past them as well, so that they are aware of his nightly desaturations, accompanied by a cough.  The cardiac nurse who Tyson sees regularly said we had to take him to emerg because the de-sats could also be heart related and there would be no way of knowing unless he had a chest x-ray.  (A chest x-ray would reveal if the fluid was in the lungs, or in the pleural space around the heart and lungs.)
So we brought him in to Headwaters emerg today.  I called my Mom to come give me a hand because now that I also have a nursing baby who tags along it is more difficult to deal with Tyson when he gets in his "moods." And boy am I ever glad she was there! Not to mention the long, boring hours for me....the long hours get to Tyson too and he was pretty irritable by the end of it!  It was nice to have an extra set of hands so we can switch babies around every once in a while :)
The doctor ordered Tyson be put on oxygen immediately and later his chest x-rays revealed lots of yucky fluid (pneumonia) in the lungs.  Dr Murphy, Tyson's pediatrician, was there and he also assessed him for signs of heart failure (heart failure often starts with a wet, juicy cough) and so far we are leaning towards the de-sats being from his pneumonia. Dr Murphy ordered both oral antibiotics and IV antibiotics.  Thankfully, they were able to place the IV and run the labs' bloodwork all in the same poke so Tyson wasn't horribly traumatized.  He is also on oxygen via nasal prongs.  I am amazed at his memory.  It has been 14 months since he's been hospitalized and on O2, and when we asked him if he wanted the O2 via nasal prongs he said, "No! They hurt my nose!"  So he was put on the O2 mask for an hour or so, until he realized that it wasn't like his nebulizer mask at home which comes off once the Ventolin is done.  This mask had to stay on full-time.  Once he understood that with the nasal prongs he could still eat, drink, and talk, he changed his mind and went with the nasal prongs.
He is now on the pediatric floor at Headwaters (with no immediate plans to visit Sick Kids unless the treatment plan doesn't work.)
The advantage to being at Headwaters is that Brian  was able to come to the hospital after work and take a shift with Tyson.  It was a long, tiring day with Tyson and also trying to keep a baby occupied.  Tomorrow I am going to take along a few of her baby things and stay the day with Ty again, while Brian goes to work. 
Hopefully Tyson responds well to the O2 therapy and the antibiotics and that this isn't a long stay.  Please keep Tyson's health in your prayers.  Please also pray for our family as we again juggle things around to make everything work.  With 3 kids in their last week of school and a nursing baby it makes things very interesting! 

1 comment:

Aunt Rita said...

Wow...poor little fella. Hey so far so good then. Let's hope and pray that the antibiotics do their magic and that Ty can be home again soon. Like you said, it sure CAN be interesting to say the least, with the others in school and a little one nursing.
ALL the best to you Melissa and Brian!!THanks so much for letting us know!!