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!

HOME AGAIN!

"I will exalt you, my God the King;
I will praise Your Name forever and ever.
Every day I will praise You
and extol Your Name forever and ever.
Great is the LORD and most worthy of praise;
His greatness no one can fathom."
Psalm 145: 1-3
Praise God we are home! Tyson was released from Sick Kids hospital on Sunday afternoon. He was not officially off O2 for 24 hours but since he was on such a small amount overnight, they decided to let him go home. He will still be taking antibiotics for a few days to help fight the infection, and we'll have to keep up with the ventolin and flovent to treat his reactive airways (asthma). The swab tests came back negative, which tests for the most common big bugs like RSV and certain types of pneumonia. The doctors figure it was some sort of respiratory tract infection in the broad pneumonia spectrum. Either way, he's home! He slept like a trooper last night, from 8 pm till 9:30 am! He hasn't slept like that in a long time, so we're glad to have our happy baby back again. His colour has much improved, and his lips are pink again instead of blue.
Thank you all for your thoughts and prayers. Thanks also to those of you who helped out with our other kids in any way, the communion of saints is a beautiful thing!
Mel:)

Saturday, March 13, 2010

Tyson is stable. The oxygen is being weaned off slowly and his sats are remaining stable at about 75% with smaller amounts of O2. 75% is still not the best number, but he won't be able to go home until his sats stay at 75-80 for at least 24 hours without any O2 help at all. The preliminary swab results have come back negative, indicating there is no viral or bacterial infection, but it can take up to 48 hours for bacteria to grow. Since the swab was taken this morning, it may take till Monday to know for sure. Either way, he is stable and hopefully can come home soon. It's hard to understand why this has happened, especially since it wasn't really the cough or cold that concerned us the most. We were more concerned about his colour and unusual behaviour, but I guess even a small cold can affect him this way.
Tyson's mood remains happy, he really enjoys playing peek-a-boo with the nurses as they peek at him from outside the door. It's hard to not be allowed to go out for a walk around the hospital with him. As long as he is showing symptoms of a cough or cold, the nurses have to gown-up and wear a mask around him, and we have to keep his door closed at all times, especially because we don't know what is wrong with him. Last night he slept the best he has in several days; very settled and into a good, deep sleep :)
We were able to spend time together as a family. Brian brought the kids here and they enjoyed seeing Tyson again and spending time at the Play Park and at the ever-popular Marnie's Lounge. They also brought up a tennis ball and mini-hockey stick for Tyson and he is quite enjoying playing catch with the nurses when they come in.
That's the update for today. Keep the prayers going up!
Mel:)

Respiratory Tract Infection: Friday, March 12, 2010

Tyson has been admitted to Sick Kids again. Over the last week his colour has not been good, he's been very irritable, not sleeping well, and has a wet cough. He also shows increased work of breathing when walking, running, and standing from sitting position. A lot of grunting and groaning as he exerts himself. This can be the normal progression of a child with heart disease who is awaiting the next stage of surgery. However, at this point we always need to watch out for signs of congestive heart failure being so close to the Fontan surgery. The combination of all these symptoms worried us, so we called Sick Kids. We made arrangements for Tyson to be seen by a nurse in cardiology. (We didn't want to go to the local ER because Tyson is just too complex for them to deal with and we most likely would end up at Sick Kids anyways. The doctors and nurses freak out because they don't know what to do with him, both Tyson and I would have lost an entire night of sleep, only to be sent to SK in the morning!) This way, we got a bit more sleep at home (sort of) and were given the best care for him right away.
During the nurses's assessment, she noticed that he was much "duskier" in colour than at his last appt on Feb. 17, he sounded congested, and his sats were in the high 60s. At his last echo on Feb 17 they were 80-82. So sats in high 60s is not good! There is something going on, we just don't know what yet. He had a chest x-ray which revealed some fluid in his lungs. The x-ray cannot determine what the fluid is, how long it's been there, or if that is what is decreasing his sats. Tyson also had some bloodwork which revealed slightly elevated white blood cell counts, indicating that he is fighting something. It's unknown at this time whether it is a viral problem or a bacterial infection. He is on oxygen right now, and will be getting Lasix to help drain the fluid in his lungs, and an antibiotic to get on top of an infection, if it is indeed a bacterial infection.
He seems happy enough, although he hates when anybody unfamiliar enters the room to poke and prod him. Right now he is sleeping, so I am able to write a quick blurb. But please don't count on regular updates, it will be very difficult to leave Tyson at this stage. He is in the same type of crib as he has been in before, but the railings raise way up so it's a big play pen for him. This afternoon he quite enjoyed rocking it back and forth and feeling it slide across the room (even with the brakes on.) He's got quite the personality. He's also the only 15 month old I know who knows exactly what to do with hand sanitizer. LOL He rubs his hands together so nicely!
Despite the fact that his sats are low, his colour is kind of blue, and he's coughing, he is actually quite happy. He's not in ICU or intubated, he's just on the ward floor, but he'll be here for a few days at least. That is providing that the low sats are due to infection. If he doesn't improve by Monday, and his sats don't improve, they will do another echo to see if it is a heart problem.
Blech, all this fun all over again. And just as my children begin their March Break. (Last year we were stuck here over Christmas holidays, New Year's Eve, Easter weekend and May 24 weekend.) Thankfully, Tyson has been pretty healthy ever since his surgery in May, and we do know Who is holding Tyson in His hands.
Please pray that Tyson heals quickly and we can go home soon!
Mel:)