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!

It's Almost September...

I've had butterflies in my stomach now for almost a week, just thinking about the fact that September is almost here.  In two days the calendar page flips over and a new month begins.  On September 3 my half-hearted warrior will step onto the big yellow school bus for his first day of Kindergarten and be apart from me all day long.  All day long.  ALL. DAY.  LONG.  I'm so not ready to let him go, and I honestly don't think he's even ready to enter the big wide world yet, but I know I have to let him go.

Tyson on the other hand is SO EXCITED!  The fact that he is so excited is definitely helping me cope, but I still want to cry.  I think most of my emotions are from the anxiety and fear of letting him go, of what could happen when I'm not around, and of what kinds of illnesses he could pick up at school.  But I have to trust that the staff at DACS understands the seriousness of his medical needs, that the school society as a whole understands, and most of all I have to trust that Tyson is always in God's hands, even when he's not holding onto mine.

I wanted to share with you something that I stumbled upon tonight that is making me feel a lot better about it.  I don't know what it was that led me to the big white binder on my shelf containing Tyson's Hospital for Sick Kids medical records, but in any case I started leafing through the pages tonight for the first time in probably over a year.  Whenever Tyson has a medical procedure like an ECHO, ECG, chest x-ray, MRI, cath, or open heart, I ask the records department for copies of his reports.  I like to know exactly what's going on in his heart and how his pressures are changing or stabilizing, or what have you, so that there are no surprises for us down the road. I also like knowing what the cardiologist is talking about and what kind of questions to ask when he explains Tyson's heart to me.

Anyway, this is what I came across in a letter written by Tyson's cardiologist to his family doctor (he updates the family Dr after every clinic visit or ECHO to keep the family Dr up to speed on Tyson's heart health.)

Report to Family Dr on Tyson's June 23 heart catheterization
"At this point in time the surgeons were reluctant to readdress the pulmonary veins through surgery ...however it was felt that he should be referred to the cath lab again to have the pulmonary veins reassessed for any progression of the stenosis...In the meantime however, a longer term plan would involve cardiac transplantation either into a right lung only or with concomitant transplantation of the left lung."  

For those of you who may not understand, this means that there is nothing more that can be done about Tyson's pulmonary vein stenosis, and he will eventually need a heart transplant - which would either be connected to only the right lung (his good lung) or they would do a heart and lung transplant at the same time.

This is absolutely no surprise to us.  We've known about this since that cath in June 2011.  He had another cath in January 2012 - the one when I was 8 1/2 months pregnant with Addisyn - and this cath confirmed that indeed, there was nothing more that can be done for his heart.  When his heart starts to fail, he will need a heart and lung transplant.  This is so scary to put into words. 

But I am pleased to say that it's been two years since the surgical team came to that conclusion.  We've enjoyed two more years with him, without even being listed, without going into heart failure, without any major complications.  Ok, so they can't close his Fontan fenestration because his pressures are too high.  Ok, he's been hospitalized twice since then because of pneumonia.

BUT IT'S BEEN OVER TWO YEARS and he still has the SAME heart! 

Another reason why entering September is making me nervous is because on September 20th, Tyson will be intubated and put under general anesthetic for a cardiac MRI at Sick Kids.  I'm very anxious for the results of this MRI to find out if his pulmonary veins are behaving themselves!  (Echos aren't a good picture of his pulmonary veins - veins that carry oxygen-rich blood from the lungs to the heart.)  More info about his MRI here.
Tyson will miss some school because of this, because if he catches a sniffle the procedure will be cancelled.  I'd really like to have the MRI done and over with and get the results by his next cardiologist appointment in November.  So he might only get to go to his first week of school before our house goes in lock-down mode :(  It's been a long time since we've been in lock-down and I sure don't miss it. 

Please pray for health and strength for Tyson as he starts school, and for health for our whole family so he can have his MRI in good timing.

Pray also that Tyson will not be anxious about his procedure. We haven't told him yet because he hates needles and IVs and every time we mention Sick Kids he thinks we're going there for the doctors to open his heart.  I don't want him to be uptight about it for weeks beforehand.  We will obviously have to tell him something when he realizes he's missing school.

We will pray for the right timing and the right words.

August Update

Tyson has had a pretty good summer.   After he fully recovered from a bad cold in June (one that I thought he would have needed some oxygen to help him get over...but he made it through!) we managed to wean him off his nebulizer mask and switched him over to puffers instead.  He did really well with that and we enjoyed most of July with him only using his aerochamber, which was an awesome time-saving tool in the mornings and evenings.  Instead of a mask that takes anywhere from 10-30 minutes, he would just have a few puffs through his aerochamber each morning and evening!  It was great! 

In July a really nasty cold went around and Addisyn caught it as well.  She is finally getting over it now, and it's been 4 full weeks since she started her symptoms.  Within 2 weeks or so, despite my efforts to keep him away from Addi, Tyson caught it as well. But we weren't as willing to let him ride it out for the full 4 weeks like we can with our other heart-healthy children.

He started symptoms of coughing two weeks ago, so we immediately switched him from his puffers back to ventolin & pulmicort through his nebulizer mask again.  We went camping for a week at Albion Hills with the Kottelenberg family, and during that time he managed ok.  His energy levels were still fine then, and he even learned how to ride a two-wheeler that week!  (A very proud day for us all!)  

At camp, we kept up with his ventolin & pulmicort 4X day and he was coping ok.  Once we got home his cough started sounding very wet and it sounded to me like the virus was settling into his lungs and he was starting to come down with pneumonia.  Having said the same thing during his last cold in May but seeing how he got over that one on his own alright, we decided to give Tyson's body a chance to fight this cold on his own before rushing him in to the Dr.  But by early the next week he had a low-grade fever, was starting to really slow down, and he didn't want to go and play outside anymore.  Once a cold messes with his energy level, his sats drop, and his nailbeds turn blue, it's time to admit he can't fight it on his own and may need some help. Since he's so prone to pneumonia, we knew he'd likely either
a) need antibiotic help if he does have pneumonia
or
b) be admitted to hospital if we don't see a Dr soon.  

Since I know how much fun it is to be in a hospital, on Tuesday I took Tyson in to see his family Dr to make sure he was still ok.  Dr didn't hear any pneumonia specifically, but admitted it's very difficult to hear on Ty because his heart murmur is so loud.  Sats were 86 in Dr office, which isn't horrible for Tyson.  Because of his past history with pneumonia and how wet his cough sounded, and considering how long Addisyn's cold lasted her, Dr prescribed oral antibiotics to try improve his symptoms.  The plan was to try the oral first and if we didn't see any improvement within 24-48 hours, or if his condition deteriorated at all, he'd have to be admitted to Headwaters to start IV antibiotics.  We took him home, prayed the drugs worked and...within 24 hours Tyson's energy levels improved greatly and the cough slowly started to go away.  We're thankful that the oral antibiotics worked so quickly and that Tyson could bounce back without a stay in hospital!  Tyson's pneumonias can sometimes be stubborn and take time to improve even on IV antibiotics and oxygen therapy in hospital, so we're thankful the oral meds worked well this time :)  Especially because we have a very exciting weekend planned this coming weekend! 

Our family has been asked to participate in a promotional video for Cardiac Kids.  On Thursday, our whole family is making the trek out to Toronto for the video shoot where there will be hair stylists and make-up artists on set, activities for the kids between shooting, and snacks & lunch provided.  The video will be put up on their website to increase awareness about Congenital Heart Defects and what Cardiac Kids does for children & families affected by CHDs.  We are so excited to get to participate in this exciting event!  Stay tuned to this blog where I will for sure post a link of the video.  This could be an emotional day for us, because we have to speak about how CHD has affected our family, and everything Cardiac Kids has done for us, so please pray I don't blubber like a fool through the whole filming :)

Then from TO we are heading to Niagara Falls for one night to take advantage of free admission to 9 different attractions, generously donated to us when we left the GKTW village after Tyson's wish trip to Florida in February.

Then from Niagara Falls we travel into the USA to Darien Lake for two days of amusement park and waterslide fun!  Again, park admission generously donated to us when we left Give Kids the World.  

With Brian being so busy with work this summer, he's worked a lot of evenings and most Saturdays too, so we're thankful for the opportunity for our family to get away together.  (Brian didn't even get to camp with us at Albion Hills with his family - I went on my own with all 5 kids and a puppy....so we're both looking forward to this mini-vacay!)

I'm sure I'll post lots of pics soon!