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!

Another Trip to ER - but with a happy ending!

Tyson had another trip to Headwaters ER department last weekend.  On Saturday afternoon, he fell off our kitchen counter onto the floor, smack onto his head.  We did what we always do when he bangs his head really hard.  Ice it for 15 minutes, calm him down, give Tylenol if he complains of a headache, and *watch*.  We watch him for any signs of brain hemorrhage or stroke.  Dizziness, confusion, irritability, vomiting, difficulty speaking, numbness or weakness of arms or legs.  After 15 minutes of ice and some TLC, Tyson asked for Tylenol and then went off to play.  He perked back up and within an hour or so he was back jumping on the trampoline.  Worries gone :)

At 7:30pm when I called him in for his bath, I noticed a golf-ball sized swollen bump on the back of his head.  I called Brian in to have a look and we both agreed that even though he didn't have symptoms of anything serious, he should get checked out.  Trust me, the last thing I want to be doing at 7:30pm on a Saturday night is going to emerg with my 4 year old, when I should be tucking my kids into bed on time so they can be ready for church in the morning.  But with the 4 year old being on blood thinners, you can never be too cautious. 
ER Dr looked him over, looked into his eyes, checked his limbs for signs of weakness or tingling, asked him a bunch of questions, and then sent us on our way with instructions to wake him up every 2 hours though the night just to be safe.  He said if we have any concerns overnight or if he's irritable in the morning, don't hesitate to come back in and they would do a CT scan.  That's really the only sure-tell way to diagnose a brain bleed.  But they would have to sedate Tyson for 3-4 hours and since it's a lot of radiation, they don't just do CT scans when the child is showing no serious symptoms.

When we started putting on our sweaters to leave, Tyson was shocked and said, "Huh?  We get to go home??"   Yes, buddy.  This time we do :)

This picture shows the swelling, but it really was even worse than what this picture shows.  It was hard to get a good angle on the camera.
Waking Tyson up every 2 hours is great fun.  We were supposed to watch him for irritability the following day, but of course he was grumpy having been woken up every two hours throughout the night!  We allowed him a quiet morning at home with his Mom, but decided in the afternoon he was totally fine, and he came with us to church for the afternoon service.  We're thankful that nothing serious transpired from this fall.  It actually worked in Tyson's favour that his INR level was a very low at the time of the fall (meaning his blood was 'thicker' than it's supposed to be for him.)  If his INR was on the higher end, and his blood was too 'thin,' he would have swelled and bruised even worse! He is supposed to be between 2.0 -3.0 and his INR was only at 1.5 at the time...which is WAY too low for him.  If his INR is too low it can cause a stroke if his blood clots in his fenestration hole in his heart - but we're thankful that this time it meant he didn't hemorrhage badly from the fall. 

The next morning the swelling had gone down but he was left with a big purple bruise.
Right now Tyson's asthma is acting up and he is coughing a fair bit again.  He still needs his nebulizer every morning and evening, and more ventolin throughout the day if required.  He was supposed to see the respirologist on Monday but the appointment was changed to this Thursday instead.  I am very much looking forward to what the respirologist has to say about why we can't seem to manage Tyson's asthma symptoms as well as we could last winter.  Last winter he made it through all the way to June before needing oxygen therapy, but this winter he's spent most of the winter coughing.  He was clear for about 2 weeks after his hospital stay in April but then started coughing again mid-May.  He had chest x-rays done at Sick Kids at the end of May, which didn't indicate pneumonia at that time.  I think he's coughing less the past two days than what he was last week, but I still want to talk to the respirologist about a possible dose increase or change of meds.  And try to figure out how to keep this kid out of the hospital for the summer (and preferably forever!)  We love having him home and we're always on edge when he's coughing so badly.  We know from past experience that he can go steeply downhill in a matter of hours.  It all depends on when his body decides to just give up.

Other than the cough, Tyson is continuing to challenge us and humour us all at the same time.  I know his Kindergarten teacher has her work cut out for her, but we are trying as hard as we can to prepare him for how to function appropriately in the classroom.  We feel so nervous and so blessed at the same time about Tyson going to Kindergarten.

Tyson will be starting soccer this summer with his peers in our school soccer league.  I am curious to see how he keeps up with other kids his age, as this would be a very good gauge as to how his energy compares to others.  We are used to Tyson being Tyson and so it can be difficult to answer his cardiologist when he asks us how Tyson compares to others his age.  I know he has lots of energy bursts, but these are usually quite short-lived because Tyson knows his limits and knows when his body is telling him it's time to stop.  At any rate, we are excited that Tyson will be able to enjoy soccer with his friends.

We also got a new puppy last weekend!  His name is Tazer and he's a male black lab pup.  We're happy to have another member of the family, and Tyson loves to walk him around our yard and give him doggy treats when he sits on command. Pictures will be posted soon.

Till next time,
Melissa

No comments: