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!

Cardiac Cath and MRI - June 23

Tyson finally went in to the cath lab at 1:45pm. They were running behind schedule. Thankfully he did fall asleep in Brian's arms at about 12:30pm so he wasn't TOO cranky. For most of the morning all he repeated over and over was, "Juice. Juice." Of course, he's been fasting since last night and his last drink was at 8am in order to prepare for the 11am procedure. It's always tough being the second case of the day, we all much prefer first case but unfortunately we don't have a choice. Brian and I also fast along with him (other than our quick bowl of cereal at 5:30 am before we woke Tyson:) so by the time he went in, we were all very hungry, thirsty, and tired.
So Tyson has his MRI once he's under general anesthetic and intubated, and then they take him straight from MRI to the cath lab to perform the fenestration closure. We were told it would be about a 4 hour wait. We'll update again once we hear something. With the surgery running behind schedule, plus factoring in the minimum 4-6 hour recovery time (depending on if they went in through an artery or a vein,) we won't be going home till evening at the very earliest. We will update again once we hear something.

8:15 pm

First the good news, then the bad news. The good news is Tyson made it into recovery room at just after 5pm, has to stay for observation for 4 hours, and then we will get to go home later this evening.

The bad news is very devastating to us and we are still trying to process it all. There is a huge problem with his left pulmonary veins; they are not getting better and it appears the Coles procedure he had done in December didn't really help at all. The left pulmonary artery seems to be damaged by the descending aorta, so it's small from other heart anatomy pressing against it. However, it appears that the pulmonary vein stenosis is indeed caused by the unwanted growth of cells inside these veins. So the problem will not get any better, but we need to find a way to prevent it from getting worse. They did try to send the catheter into his veins to see if they could dilate them or balloon them in any way, but they were unsuccessful at this.

As a result of the very small pulmonary veins, most of Tyson's blood is going through the right side of his heart and lungs, causing very high pressures in his right lung. It was not safe to proceed with the fenestration closure today because it would have caused dangerously high pressures in his right lung. So he will remain with low O2 saturations until there is a plan in place for what to do next.

The report from today's procedures have been emailed to Tyson's staff cardiologist Dr McCrindle, who is away on holidays till next week. He will need to meet with his team of experts to present Tyson's case to the surgeons at their next meeting and come up with a plan. No one has outright said this to us, but we are most likely looking at another open-heart surgery in Tyson's future; but we don't know at this point how urgent this is. The cardiologist who performed that heart cath was very clear and direct with us that his left lung is not functioning well at all and they cannot leave things this way. Having said that, when I mentioned the word "transplant" to her, she did say that she believes this is still a few years down the road, and that there are probably other surgeries they can try instead of opting for transplant quite yet. As much as it may seem that having a heart/lung transplant may "solve" the problems, there are extreme risks that go along with it too, especially on a young boy like Tyson. Plus the risk of rejection, and a lifetime of anti-rejection medications. We're not there yet in our minds anyway; we're hoping and praying there is another way around this.

Tyson is recovering well. He's been drinking well this evening and starting to eat a few things. He will need to resume his warfarin (blood-thinners) tonight and continue with them until the fenestration is closed, whenever that will be, if that will even take place. It's not a pressing matter at this time to close it, but it is imperative that we keep Tyson very healthy and continue with aggressive lung therapy treatments. Even though the ventolin mask (nebulizer) can cause elevated heart rates, the cardiologist feels that a rapid heart rate is better for Tyson than reoccurring pneumonia. Tyson will see the respirologist at Sick Kids on July 6, so we can make a plan as to what to do to keep his airways open. In the meantime, we will be giving him a ventolin mask a minimum of twice daily to keep those airways open and prevent pneumonia from settling in.

That's the update for today. Not the best news we've heard. We're trying to let it soak in and choosing to trust God with this as well.

Prayers are always appreciated!

Mel:)

8 comments:

Amy VanStraten-Lodder said...

Hi Mel,
Thanks for the update, it's good to know what going on and also to be able to hold you and your family in our prayers, knowing what's up. You and Brian are such strong parents, it is clear God is carrying you and Tyson along this path. Trust in Him and He will lead you always.
Love Amy Lodder

Anonymous said...

He is well for the time being. Take things day by day...know that you have the full support of all of your heart friends and Tyson the love and strength from his fellow heart brothers and sisters. We are sending you love and health.

Laura V. and Co.♥

wandering-pilgrim said...

Thinking and praying for you; "Be still and know that I AM God."

Anonymous said...

I read your blog through Michelle's facebook page and although I do not know you,I am a mom as well and reading this my heart aches for what you and your child are going through. Please know that I am praying for you all as well and send my wishes your way.

Anonymous said...

Brian and Melissa
Ed and I are praying for you and your family. We pray you are comforted in the fact that God is there for you and Tyson.
Ed and Cisca Jansen

Steph said...

"Cast your cares on the Lord and he will sustain you He will never let the righteous fall." Psalm 55:22

In times of uncertainty what a comfort it is to know that God has all things in His control, a purpose for all that happens and he will help carry us during difficult times.

May you receive the clear mind to think through all that is happening and to do what is best for Tyson at this time.

"Many are the plans in a man's heart, but it is the LORD's purpose that prevails." Proverbs 19:21

Anonymous said...

Oh how discouraging. We will be praying for your little guy. It is amazing with chd's that although your life may almost seem normal, it is always just beneath the surface. May God be strengthen you and give the doctors wisdom.
Sarah Barnes

Anonymous said...

Hey, Brian and Mel. You are in our thoughts and prayers as you go through another "bump" in the road. We pray that the Lord will give you strength and patience, the doctors wisdom in knowing what is the best course of treatment, and that He will give Tyson healing in due time.

Love and prayers, Allen and Kerry and family.