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!

October Update



In my last update I wrote that Tyson was adjusting to school very well.  While he is still enjoying school and managing ok while he’s there, he is becoming more and more tired as the days and weeks progress.  I still pick him up every day at 3:30pm so that we can get all the therapies & meds in on time before he has to hit the hay at 7pm.  This is working ok for him (and certainly better than taking the bus home) but he is definitely *done* at the end of the day.  His teacher says he is keeping up ok in class and hasn’t noticed any problems, but he has been a little quieter lately.  His interim report card came back with all “Goods” and “Excellents,” even in the social areas.  We’re very happy to read that!

From a 'lung health' perspective, he's been doing really well!  He has caught a few small sniffles since school started, but got over them ok just using his puffers and lots of physio - but his nebulizer has been collecting dust since his last hospital stay in June. We've started him on Mullein, an herbal remedy that expels mucous from the upper respiratory tract and develops the lungs...and a few other immune builders...and we've started him on lung physiotherapy and deep breathing exercises every day.  So far so good!

When Tyson comes home from school, he is often quite irritable and sometimes will just lay on the couch asking if he can please have dinner now so he can just go to bed.  When it’s time for his lung physiotherapy I have to try so hard to keep him awake, even with the tv on.   He enjoys the therapy so much and finds it very relaxing.  It’s kinda like a massage, so hey I’m sure anyone would fall asleep during a nice massage after a long hard day, right?!? 

Since starting school, Tyson is in bed by 7:00pm every night, weekends included.  Some nights he goes to bed at 6:30pm because he just can’t cope anymore.  While it’s nice to have him sleeping so early in the evening giving me more time with the other kids, it can be quite interesting trying to regiment our day to get him into bed so early.  I keep waiting for the adjustment period to be over so that he can maybe start going to bed a little later, like 7:30 even, just to give us a bit more breathing space, but it’s just not happening yet.  He started the first four weeks of school going to school every single day and not needing a break at all.  But for the past four weeks he’s needed at least one day off, or half a day off, every week to mentally unwind from the past few days and then gear up for the next few days.  Brian and I have never been too concerned with Tyson being so over-tired right now.  He’s our heart baby and he’s just started school full-time, so of course it’s going to take some adjusting - and he’s going to be tired!

Well, last Monday I took Tyson to see his pediatrician for his regular follow-up visit that we have every 3-4 months with him.  The Dr noticed that Tyson’s heart rate was a little sluggish compared to where it’s been in the past.  This Dr knows him very well, as Tyson is always under his care when he is hospitalized at Headwaters.  Usually his HR is in the 90s - ish, but Monday it was in the low 60s.  He said everything sounded ok with his heart and lungs, but then asked me if there had been a change in Tyson’s sleeping or activity levels.  After explaining that he has been really tired lately but it’s because he started school full-time, he asked when his next ECHO is, etc and asked me to keep an eye on his activity levels until his then. (We go to Sick Kids for ECHO, ECG, cardiology visit, dentist, thrombosis appt on November 12.)  

Now of course, don’t we start to second-guess everything? Is Tyson really tired just because of school or is he tired because his HR is too low and the blood isn’t pumping as well as it used to?
We’re very well aware that post-Fontan kids a lot of times will eventually need a pacemaker to help their heart keep its pace.  We’re not ignorant of the fact that low HR could mean the heart is weakening and needing a boost of some sort.  Sometimes I wish I didn’t know so much, maybe then I wouldn’t worry so much of what I know ‘could’ happen.  

I have called Tyson’s cardiologist to give him the update of what has been going on and ask if it’s ok to wait another two weeks before his next echo and check-up.  He says it’s fine to wait as long as we’re comfortable with where Tyson’s activity levels are right now (and he is ok – he’s still going to school and the teacher has not noticed a decrease in his energy, just that he’s quieter than normal.)   Dr. McCrindle has ordered a 24 hour holter monitor for Tyson to wear which will track his heart rate both awake and asleep.  The holter records the heart rhythms and tracks its electrical activity.  He would have to wear it during normal activity to see what his heart is doing while at rest, at play, or asleep.  So he will come home with one after his next appointment on November 12 and have to go to school and resume normal activity while wearing it.  The holter will give us the answers we need; if he is tired because something is mal-functioning in his heart, or if he’s just tired because school is a big adjustment for him. 

Prayers are always appreciated! 

I wanted to share with you another little blessing we received a few weeks ago.   Because Tyson needs to have his head and lungs facing in a downward position during physio, (so that any build-up of fluid which has loosened during physio can drain from his lungs) I had been looking into a wedge pillow so we could all be more comfortable during this daily routine.  The one I had priced was around $100 from the Home Health store in Orangeville.  Then my mom who works as a PSW for elderly people found out about a pillow that wasn’t being used in one of her client’s home.  This elderly man was happy to donate his late wife’s wedge pillow for Tyson to use.  He is the same man who donated his wife’s hospital bed to us two winters ago, so that we could raise the head of Tyson’s bed for better lung drainage during cold and flu season.  We still LOVE this bed and I believe it has helped Tyson breathe easier at nights, and is a very handy tool in treating and preventing pneumonia.  Anyway, when this kind man found out Tyson needed a wedge pillow for physio, he gave his to us!  We are so thankful!  I don’t have a picture of Tyson getting physio using his new pillow, but I do have a picture of Tyson doing physio on his friend Porky the Pig.  You can see in the picture the shape of the pillow and how it is helpful for postural drainage while we do Tyson’s physio.  We are blessed in so many ways.  

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