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!

Tyson is a Big Brother!




!~TYSO
N IS A BIG BROTHER~!




Addisyn Faith was born into the world on Wednesday, January 25, 2012 at 12:20 am, weighing 6 lbs 12 oz and 20.5 inches long.

This week was a life-changing week for the Kottelenberg family. On Monday, the surgical team at Sick Kids Hospital met to discuss Tyson's heart and what could be done to repair it. (The heart cath done on January 9th was their second attempt at closing his fenestration and because they were unsuccessful again, the surgical team met at conference to come up with a plan for Tyson.)
Due to the fact that I was bringing my kids to piano lessons at the time of Dr McCrindle's call, we had to wait until Tuesday morning at 7:30am for him to call me again so we could go over the details. Not only had I missed this very important phone call, but I also found out that afternoon that I was going to be induced the very next morning to deliver our 5th baby, because the ultrasound I had a week earlier revealed the suspicion that the baby had stopped growing properly. The midwives consulted an OB and they decided it was better for our baby to be outside the womb where she could grow and thrive rather than continue on with the risk of not growing properly in utero.

We were very nervous about an induction, but at the same time we didn't want to risk the health of our unborn child so we agreed to go to Alliston hospital for me to be induced, after discussing with Tyson's cardiologist the plan for his future.

The news we received about Tyson's future was good news (somewhat) and bad news. Bad news because the surgeons all definitively agreed that there is nothing more they can do to repair the pulmonary veins in Tyson's heart and the next stage for him is heart and/or lung transplant. This is heart-breaking to hear. "There is nothing more that can be done."

In other ways this is good news, because it means that, for the very first time in Tyson's life, there is no *immediate* open heart surgery looming in the near future! Dr McCrindle said that Tyson is not even close to being a candidate for transplant yet at this time, so they will not be placing him on the list immediately. He feels that given Tyson's healthy status right now, transplant could potentially be years down the road. This is so reassuring to hear! What a relief!

As long as Tyson does not require hospitalization for every little cold or flu, and we can keep him clear of pneumonia, he could potentially be surgery free for years. We are hopeful that as Tyson grows bigger, his airways will become less reactive whenever he catches a cold. However, he will continue to desaturate (lowered O2 sats) over the months and years. If he can live with his cyanosis and continue to stay healthy then we will just watch and wait. He will have to stay on coumadin his entire life but at least he's past the clumsy toddler years already (on the other hand, the dangerous, adventurous years are ahead of him yet!) While most kids are followed up once per year after the Fontan, Tyson will be followed up much closer than the average Fontan patient with appointments every 3 months instead.

For those of you who understand "heart talk," here is the scenario: During his cath, they found a significant amount of blood crossing through the fenestration. As a result, when they attempted the 2 test occlusions, his cardiac output declined, his heart and lung pressures rose, and his oxygen saturations through the Fontan decreased as well. Right now his pressures are between 12 and 14mm. They also found a small left pulmonary artery and some collaterals draining into his left pulmonary veins as well. There are no obstructions in the Fontan per se, but there is very high resistance going through the lungs. Because the resistance in the Fontan circulation is too high, Tyson is clearly not a candidate for fenestration closure. When the surgeons discussed the possibility of repeating another repair of his pulmonary veins in order to alleviate some of these pressures, they all agreed that it would be too difficult to repair. The left lower vein is being compressed by the aorta and other heart vessels and attempting a repair on that would not only be risky, but would also cause even more scar tissue than what is already there from his repair in December 2010. So it is unlikely to be able to repair the pulmonary veins enough to make fenestration closure successful.

After Brian and I had time to absorb what was discussed at the surgical conference, we rejoiced that Tyson won't need surgery in the near future, and put that part of our lives behind us for a time to focus on the birth of another child.

We phoned Alliston hospital and they told us to come in at 1:00pm to begin induction. Since I had been having early labour signs for a few days already, and since this is my fifth pregnancy, we all assumed that labour would begin on its own with the breaking of my waters. They broke my waters at 2:00pm and we walked around waiting for labour to begin. But after several hours of labour starting and stopping, things did not progress at all. We discussed with the midwives our options to get labour going. At about 9:00pm we asked for me to be induced with the drip. (I never thought I'd ever ask to be induced with the oxytocin drip but I was just eager to get the show on the road and have our baby! I knew I was not going to sleep that night until our baby was in my arms.) So I was finally induced at 10:00pm and Addisyn made her appearance at 12:20am. There were a few complications throughout the process, but God indeed provided for us once again.

The immense relief and peace that I now feel is overwhelming. All of the stressful events of this pregnancy and labour - the antibody issue, the extra tests, fetal echo, extra ultrasounds, measuring considerably small towards the end, the realization that our baby was no longer growing adequately, the frustrating induction - then her heart rate kept dropping during the last number of contractions, the cord was wrapped around her neck *twice*, and I hemorrhaged pretty badly afterwards (which resulted in some panicked nurses re-inserting an IV, a few bags of pitocyn to stop the bleeding, and some other not-so-gentle interventions to stop the bleeding) - all of these events combined made for a lot of anxiety and worry throughout the pregnancy and labour.

As soon as she was born, however, a huge load was lifted! In the same day we experienced two life-changing events. Not only did we learn that we don't have another open heart surgery for Tyson looming over our heads, but we were also blessed with a beautiful, healthy baby girl! From the moment Addisyn was in my arms, the burdens were lifted and I felt FREE! We are so ready to move on to the next phase of our lives, not having to look ahead to another impending surgery, just enjoying our new little bundle and adjusting to being a family of five wonderful blessings. I am so unbelievably happy, I simply can't put it into words. :D :D :D :D :D

THANK-YOU FATHER!


2 comments:

Aunt Rita and Uncle Jerry said...

What a beautiful read! Thanks Melissa, for the time to write it all down for us. It answers so many questions we readers have had, and now have answered by you.
Keep strong, and happy! God has surely watched over you all.
*hug*

Joanneke said...

I just read your blog now. It was very moving, and such a manifestation of how incomprehensible God's ways are!! We rejoice with you and praise God for His goodness!