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!

Ringing in the New Year with Antibiotics

So Tyson is ringing in the New Year with antibiotics but things could have been much worse if we didn't bring him in to emerg when we did. We're thankful that he squeaked by without another hospital admission and we could ring in the New Year with friends instead of in the hospital :)

All winter long Tyson has a dry asthma cough, but when it turns wet we are always on the alert for pneumonia.  For the past week he's been coughing a lot more, much wetter sounding, and his energy levels are not so great.  Last year when he was on the ice rink outside, he wouldn't come inside for hours but this year, he skates around the rink once and then sits on the sides huffing and puffing and just being a grouch to all those around him.  He hasn't been playing much around the house and all he wants to do is sit and play on the computer or watch tv.  We've been keeping a close eye on his O2 saturations and they have been acceptable but not wonderful.  If he's in quiet activity, the sats were fine but as soon as he stood up to run around or play his lips would turn purply-blue and his nailbeds were bluer than normal. Some cyanosis is normal for him when he's upset or extremely active, but the colour always comes back quickly with rest.  For the past 3 days he's had increasing periods of blueness which takes a while to come back, and Brian and I have gone back and forth with what to do and where to bring him since both Tyson's family doctor and his pediatrician's office are closed for the holiday season.  One is back on January 6th, the other is back on January 2nd.  We were hoping Tyson could hang on till January 2, but his sats kept dipping and he continued to be irritable and increasingly inactive, with worsening cough.

So yesterday I brought him in the Headwaters ER, where they immediately checked his sats which were sitting at 83%.  That isn't too horrible for him, but considering he had been waiting quietly in triage for half an hour, I can't imagine where his sats would be if he was up and active.  He hasn't had a fever, but they did blood work anyway for complete blood count and blood cultures to rule out infection, and also did an INR level at the same time.  (I had checked it before we left and it was fine at 2.3.) They also did an ECG of his heart, chest x-rays, and an RSV nasal swab.

The ER Dr thought she could hear pneumonia in his left lung and was preparing to admit Tyson to the pediatric ward for oxygen and IV antibiotics...boy was I sad about that!  But after a few hours of observation and once the test results came in the x-rays didn't show any pneumonia, his white blood cell count was only slightly elevated, and he maintained O2 sats of 85 in ER without any oxygen, she decided Tyson wouldn't need any oxygen or IV at this time and she sent us home with a prescription for a strong dose of antibiotics!  *Phew* So happy we squeaked by that time! I'm also very thankful for Tyson's big brother who lent out his new iPod for Tyson to play with while we waited in ER for several hours.  Playing on the iPod calmly probably contributed to Tyson's decent sats of 85.  If Tyson didn't have something to keep him occupied he would have been irritable and whining and crying...and sats would not have been 85 I can tell you that.

I am happy that she did give antibiotics because given Tyson's track record, the pneumonia might not show up on x-ray right now, but I am pretty sure that if we waited another day or two, he would be very sick and admitted to hospital with pneumonia for sure.  (If you recall what happened last time he was admitted in March, the x-ray didn't show pneumonia on admission either. But after 48 hours on oxygen, regular ventolin treatments, and no antibiotics, two days later the x-ray showed pneumonia afterall and he did end up needing IV antibiotics.)

I want to share with you a cute story from our household last night.  After checking Ty's O2 sats one last time before sending him off to bed for the night, my 23 month old Addisyn said "Meee !! Toooo! Addi !" So I clipped the sats monitor onto her finger to check her sats and when the number came up, Tyson couldn't believe his eyes and he exclaimed, "WHOOOOOAAH! A hundred! I've never seen THAT number before!" 

In the hospital, one of the nurses we knew from last time came in to say hi and see how Ty was doing.  She had an IV bag in her hand (which she was preparing for somebody else) and as we were chatting casually, Tyson had a look of panic on his face.  He finally said, "Uhhh...I hope I don't have a-monia."  Then I replied, "I hope not too, buddy."  Then he pointed at the nurse and said, "Then what's that IV for?"   She quickly apologized and explained that it was for another patient.  We both shook our heads and chuckled about that because there aren't too many 5 year olds who know what an IV bag is for - and immediately panic when a nurse walks in with one in her hand.  Oh, the joys of having a heart boy :)  As much as being a Heart Mom presents challenges and worries, I love the laughter it brings into our home over the funny things that my kids say.  Ok, maybe not all of them are funny, some are just 'sad.'  But we find humour in those moments too.  

Tyson is doing ok today.  He is coughing a LOT.  Like a LOT a LOT.  He definitely has a lot of junk in his lungs right now.  He was quite sad to miss New Year's Day skating with our church family, but he definitely won't have energy for that today anyway.  Last night he was satting 81% in his sleep - his cardiologist wants him on oxygen if he goes lower than 80%.  If we can keep him to quiet activities for the next two days while we wait for the antibiotics to kick in, we can prevent him from needing oxygen or IV this time.  I'm so thankful that we brought him in when we did, avoiding a hospital stay again.  Now we just pray the oral antibiotics work their magic and he can stay home to ride this pneumonia out.

Let's also hope and pray that 2014 brings good health for him!

Happy New Year Everyone!

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