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 (again)

Wednesday, January 7, 2009
"Shout for joy to the LORD, all the earth.
Worship the LORD with gladness;
come before him with joyful songs.
Know that the LORD is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the LORD is good and his love endures forever;
his faithfulness continues through all generations."
Psalm 100
Our Internet problems seem to have been solved now, although we are still on dial-up and not getting high-speed after all. This makes it difficult to upload pictures to this website.
We finally made it home on Friday, January 2. The antibiotics for the infection helped immensely and on Thursday night when one of the nurses came to insert the next round of antibiotics into the IV line, they found the line was clogged. So they had to weigh out their options: do they poke Tyson again and start a new IV line to finish his antibiotics? or do they put Tyson on oral antibiotics a day sooner than expected? They decided to put Tyson on oral antibiotics, kept him one more night for observation, and then let us go home on Friday afternoon. We also enjoyed a visit with Jeff and Annette in the morning, since Annette had to be in Toronto for her pre-op.

So we are now home and trying to get into routine (again). We are thankful to be here and we praise God for the medication and technology that allow us to enjoy our beautiful son each and every day!
On Tuesday we went to another clinic appointment at Sick Kids. Marg Kottelenberg (G) came with me and even volunteered to drive! I didn't realize until later that day that most of my anxiety about Tuesday revolved around the drive down there. Once Marg was in the driver's seat I seemed to calm down and looked forward to the appointment. The nurse practitioner weighed him (4.13 kg - just over 9 lbs) and looked him over. She is happy with his progress. The surgeon also had a look at his incision to see how it was healing. There was a piece of gauze stuck to the top stitch that was really bugging me for a while but I didn't dare pick at it. The surgeon snipped it off and Tyson barely made a squawk. We can tell that he has been through so much and nothing seems to phase him anymore. Even his Enox needles don't dawn on him anymore. The odd time he pulls a face but that's about it.
Tyson is now off the antibiotics (good thing too, since he was getting a pretty nasty bum rash) and he also doesn't have to take Lasix (the diuretic) anymore. We will need to keep a close eye on him to make sure he is still peeing well and doesn't start retaining fluids. But the nurse practitioner wasn't too concerned about it since he is drinking well and always has good wet diapers. He drinks about 100 mls now every 3 1/2 to 4 hours. Last night he did another 5 hour stretch for us and we are happy about that! He still is pretty unpredictable in the evenings so going out for meetings is still out of the question for now.
He remains to be a very happy baby, content to just look around at his busy surroundings. He is often found smiling away at his toys or at the lights above him. Yesterday Marg was trying to get him to smile and he gave her what I would consider a pretty good smile. He hasn't smiled at me yet though! I know it's coming soon....
Our next clinic appointment is on Tuesday, January 20. From there Tyson will have a full study echo on February 4 and then hopefully he can be transferred to Dr. Murphy, our paediatrician. Much more local so we won't have to drive as far.
On Thursday Tyson has to get his RSV vaccination. It protects against a pretty serious respiratory infection. The immunization is not offered to everyone but is mainly offered to pre-term babies, low-birth weight babies, babies with Downs Syndrome and babies with congenital heart defects. So we will have to take his Enox needle with us and give it directly after the immunization, since in order to prevent a hematoma (blood clot) the immunization has to be given at Enox's lowest blood level. So we will give the RSV needle first, then the Enox and apply firm pressure to both sites for 5 minutes to prevent blood clots.
The days are going well here so far. The morning routine takes a fair bit longer than it used to but we will get used to that. It's nice to be up early enough in the morning to get enough things done in a day but it sure is busy! The kids are adjusting well. They love their brother and are always in his face trying to make him smile. I'm sure you can picture Merrick pulling funny faces to get Tyson to smile, and Tyson just frowns at him!
One more week till I can start nursing....excited about that!

Thank you all for your prayers and kind words. We know we are in God's care and not a hair can fall from our heads without His will. To God alone be all praise and glory!

Brian and Mel
and family

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