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!

Monday, June 11, 2012

Tyson saw the respirologist in Brampton today.  This is the same respirologist who works out of Sick Kids, but also has an office in Brampton.  Since our cardiology appointments as Sick Kids can often be very long days, we decided to see Dr. B at his office in Brampton instead of trying to get his ECHO, ECG, cardiologist appt and respirologist appts at Sick Kids all on the same day.  And the drive to Brampton is much nicer than the drive to Sick Kids!

After Ty's last appt with Dr B in March, the plan was the slowly wean him from his nebulizer meds for his asthma.  We were successful at weaning him completely off the ventolin mask and then we slowly began taking him off the pulmicort (the long-term cortico-steroid medication through the nebulizer mask.)  He was done with pulmicort in early May and he was stable until about day 8 or 9 off the medication.  Then he began coughing again, having full-blown asthma attacks again, not sleeping well at nights, and he was pretty much a miserable mess most days.  Then to add to his grouchies, he fell and bonked his nose on the bench at church one Sunday, which caused a terrible nose bleed, leading up to 5 consecutive days of 3am or 5am nosebleeds until his nose finally clotted again.  Being on a blood thinner makes it a little more difficult for things to clot over and heal well.  The early morning nose bleeds were also followed by severe coughing fits (usually because the nosebleeds made him grumpy - which led to crying and coughing - anyone who has seen Tyson when he wakes up knows what we mean.)  So after the nosebleed was finally controlled, we'd also have to give him a ventolin mask to stop his asthma attack.  The entire ordeal would last up to 1 1/2 hours and then of course he was grumpy during the day because he wasn't getting enough sleep.  It was a vicious circle.

Like I said above, he was fine off the pulmicort until day 8 or 9 and then the asthma flared up worse than it has been in a really long time.  This obviously means that for the first week off the meds, the pulmicort was not completely out of his system, and once it was, the asthma attacks started again.  So we put him back on the ventolin and pulmicort, giving ventolin 4 times a day again like we did in the beginning and pulmicort twice a day. 

At his appt today,  I explained to the respirologist what happened when Tyson was weaned off his asthma medication and he agreed that Tyson might as well stay on the pulmicort for longer and we can try to cut back on it again next year at this time.  He was happy with how Tyson sounded today and that is mainly because his asthma is under control again finally.  It's too bad that things took a step backwards when he went off the meds, but we are thankful that Tyson's lungs respond so well to the medication and that we can again be on top of his asthma symptoms.  He also remains on Singulair as well.  Tyson will see Dr. B again in the fall.


No comments: