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!

Sunday, November 30, 2008

Admitted to Headwaters Hospital in Orangeville - Saturday, November 29, 2008





Wow! Who knew that a trip to Orangeville Hospital to have Tyson undergo phototherapy to treat his jaundice would end him up at Sick Kids Hospital in Toronto? The Lord has been so good and gracious to Tyson in getting him the immediate help and attention he needs.


After a few bilirubin tests over the first few days of his life, Tyson's levels were on the higher side of "normal." But because I was Group B Strep positive at the time of his delivery, and the fact that Tyson was very sleepy and would not wake up for feedings, and the struggle to keep up his body temp in the first 24 hours of his life, the midwives decided it was best that we seek medical attention and request that Tyson undergo 24 hours of phototherapy to treat his jaundice. When we arrived at the ER at Headwaters Health Care Centre, I spotted Dr. Murphy the paedeatrician in one of the rooms, hoping of course that he was the ER doctor on call. When Tyson was admitted to an ER room, it was not Dr. Murphy who arrived but another ER doctor. After asking us about all the details in the events leading up to and immediately following Tyson's birth on Friday, November 21, the ER dr. decided that his bilirubin levels were not that concerning and he was prepared to send us on our way home.


But that was not the answer Brian and I were looking for! Tyson is our fourth child and my other children did not sleep this much or have such a lack of interest in nursing, so we went with what our gut was telling us and insisted to have Dr. Murphy assess Tyson. When he did, he decided within 5 minutes that yes, there was something more going on, our little Tyson was not going home! A nurse came to check Tyson's oxygen levels and realized that his saturation level was in the low 80's (meaning Tyson was only getting 80 % of the oxygen he is supposed to get.) Tyson was immediately placed on oxygen and we proceeded to the Pediatrics Ward where Tyson was admitted to stay for at least 48 hours, until we received some answers from some blood cultures tests. Dr. Murphy took Tyson under his wing (even though he was supposed to be on his way home when we arrived in ER) and ordered a number of blood tests, including a white blood cell count and other blood cultures. He also did a lumbar test where they tap into his spinal fluid to check for infection. Most of these tests came out clear and mainly ruled out infection caused by Group B Strep.

Tyson was put on antibiotics as a precautionary measure in case of infection and and IV line because he was dehydrated. We were confused at first as to why he was dehydrated because he had gained so much at first. However, we later discovered (Monday, Dec. 1) that his weight gain was a result of fluids retention, fluids backing up and not flushing out of his system properly. Both the antibiotics and the IV were getting into him by means of a line placed into a vein in his head, because the veins in his arms were too small to tap into. He also was placed under a "bili blanket" to treat his jaundice. He also had to wear an oxygen mask to get his saturation levels up to 100 % where they should be.

It hurts us to see our son in this condition but we are thankful that he was admitted when he was, because he certainly was not getting any better at home! We are also very thankful and can see God's grace in the fact that Dr. Murphy was in ER at the time that we arrived at the hospital.


Dr. Murphy still wanted to have his respiratory system checked out. A normal baby Tyson's age should be taking in about 40-50 breaths per minute. Tyson was consistently taking in about 80 breaths per minute, so he was breathing at least twice as fast as he should have been! This concerned Dr. Murphy a lot so he ordered an echocardiogram (an ultrasound of the heart) for Sunday morning. But since the specialized technician was not working that day, we had a "smaller scale" echo done by another technician who was not quite as experienced. We are thankful that she was able to perform this echo even considering her lack of experience in this area, because it gave us more immediate answers instead of having to wait till Monday. This echocardiogram showed a fairly large hole in Tyson's heart, which is exactly what Dr. Murphy suspected right from the beginning. This news hit us like a tonne of bricks and we were very scared for Tyson, but we entrust that God would give us the strength to get through this time. Holes in baby's hearts are not a totally uncommon thing and often they close up by themselves.

In addition, throughout the many times that Dr. Murphy assessed Tyson over Saturday and Sunday, he had found that Tyson also had an enlarged liver. Dr. Murphy told us that he was not sure whether or not this enlarged liver was connected with the hole in his heart. So he informed us that he was going to consult with a cardiologist at Sick Kids Hospital. At this time, we didn't even think that there would be a possibility that Tyson would actually end up at Sick Kids Hospital! We just thought Dr. Murphy was consulting someone who specialized in this area and could give him advice on how to proceed.


On Sunday evening, Tyson's respiratory breaths went up as high as 110. The nurses were obviously concerned about this and so they called Dr. Murphy in immediately to have a listen. It was at this time that we were hit with "the bomb" that Tyson would be transported to Sick Kids either that evening or the very next morning. The nurse kinda said, "Well you knew that you are going to Sick Kids tomorrow, right?" I was absolutely shocked!


To make matters worse, Brian was at my Mom and Dad's for dinner at the time I received this shocking news so I felt very scared and alone. My brother Derek and sister-in-law Lea came in to visit very shortly after receiving this alarming news so I was able to have a very good cry in my brother's arms. Hanna asked Derek, "Daddy, why are you hugging Aunt Melissa?" To which Derek replied, "Because she's my little sister and she's crying! You hug your brother Isaac when he is crying, right? So why can't I hug my little sister?" LOL

When Dr. Murphy arrived Tyson's resps had returned back to their "normal" 80 reps per minute so it was decided that we would wait till morning to have Tyson transported to Sick Kids. The night was long and hard again, with Tyson spending much of the time feisty and upset because he wanted so badly to suck. When I let him suck on my fingers, he would rip and tear at my hands and scream...and a few times he tried to latch on to my sweater. This was very difficult for me emotionally because whenever one of my newborn babies needed comforting at nights, I would nurse them back to sleep.


We don't know what God has planned for Tyson but we know that He is by his side.

"For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29