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!

Updated Pictures February 2009


Soaking in the tub












Chillaxin' in the bouncy chair

His cheeks are getting chubbier....









"Thanks for lending me your bumbo chair, Callum!"















First smile caught on camera












Tuesday's Appointment

Wednesday, January 14, 2008

Yesterday Vicki and I made the trek down to Sick Kids, with Kenni and Tyson in tow. I even bit the bullet and drove the way there myself, with Vicki carefully navigating me. We did make it there safely, even though I did go through a stop sign while we were still in Orangeville! Ooops!I asked her to drive the way back though, to alleviate some of the stress for me.

Over the weekend Tyson lost a bit of weight during the transition from bottle to breast. This concerned me a little because the nurse practitioner talked about maybe having to do one feeding by breast and the next by bottle, with formula-fortified breast milk. This would involve more pumping, which I wasn't crazy about at all. I was also a bit in disbelief, since my others packed on weight while I nursed them, so it didn't make sense that he had lost weight. But I guess Tyson wasn't getting quite what he should have been getting while my milk supply was being built up. I made sure that on Sunday and Monday I really fed Tyson like crazy to boost my supply and to get him to pack on some good weight. He managed to pull off a pretty good number on their scale yesterday and now I can continue breast feeding exclusively. Phew, no more pumping!

The nurse practitioner was very happy with Tyson's progress. His chest x-ray came back good, and there is no new fluid building up in his lungs! His colour looks good, his sats are good, good heart rate, etc. They were so pleased with him that we don't have to go back for another clinic appointment until February 4th. Then he will have a full-study echo cardiogram, a visit with the nurse practitioner, the dietician, and an appointment with Tyson's staff cardiologist Dr. Brian McCrindle. He is the doctor that first assessed Tyson's condition and made the final decisions about his surgeries. If I am not mistaken, we will also find out more information about when Tyson's next surgery will most likely be.
Tyson is behaving well. He is doing what typical babies do. Last night he actually slept from 11pm - 5 am and I didn't even feel guilty letting him do that, since I know he is back to gaining weight well again. It felt like a pretty good sleep!

So that is the news for this week. We will keep this blog updated again after his February 4th visit. Maybe I can post some pictures again soon as we are getting high speed internet hopefully some time this week.

Mel:)




Nursing Again - Saturday, January 10, 2009

"Trust in the Lord with all your heart,
and lean not on your own understanding;
in all your ways acknowledge Him
and He will make your paths straight."
Proverbs 3: 5,6

This past week was a very busy week, trying to adjust to being a Mom of four children, and trying to establish new routines. It certainly is busy! As a result, I guess I haven't been getting enough rest and the anxiety that I feel sometimes has affected my milk supply. For the past 6 weeks I haven't had any problems with pumping, but this week things started going downhill fast. I phoned the Nurse Practitioner at Sick Kids yesterday and begged her to give me permission to start nursing Tyson sooner than the original date of January 13. She gave me the go-ahead and I got to nurse him for the first time last night. Tyson was a pro, latching on immediately and drinking as if he never stopped in the first place! What a blessing to have this experience go so smoothly!
I did have to supplement a few times last night with some of my stored breast-milk but after his 4 am feeding, I have been able to give him what he needs. It's amazing how quickly the milk picks up again once it's a baby doing the work. This morning before I nursed him he weighed 4.36 kilos and after he weighed 4.48 kilos. That is a 120 ml intake! If this keeps up, he will be chubby in no time!
Because Tyson started on breastmilk sooner than originally expected, they would like to see him again this week instead of waiting for his Jan. 20 appointment. Tyson will also have a chest x-ray to make sure that lymphatic fluid is not building up again, and then have another clinic appointment with the nurse practitioner to check his vitals and assess his weight gain.
Please pray that the fluid does not start to build up in Tyson's chest again and that I can continue breastfeeding him. That is the one uncertainty right now. If the fluid comes back, it would mean another 6-8 week course of portagen, at which time I would most likely have to give up on breastfeeding. We shall wait and see how the x-ray turns out. We are praying that God gives us patience while we wait the results and peace with His plan.

Brian and Mel
and family

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

HAPPY NEW YEAR!

HAPPY NEW YEAR!
The doctor on rounds this morning said that we could most likely go home tomorrow....that is Friday. We are hopeful.... but not getting our hopes up tooooo high, because you never know around here when things could change. It would be great if we could be home tomorrow, to spend some more time with our kids before they go back to school and Brian goes back to work. We shall see.....
Tyson had a good night last night. We left him at about 11:30 pm to walk down to Nathan Philips Square to ring in the New Year. It was packed there, we have never seen so many people in the same place at the same time. There were thousands of people there! Once we found a nice spot with "not too many" people around, it got tighter and tighter as midnight approached. By 11:55 pm, we were all packed in like sardines and wouldn't have been able to leave even if we wanted to! But it was nice to see the fireworks and get out into the fresh -25 degree air! It was warm while we were there but the walk home was crazy! Soooo cold! But it was an experience we won't ever forget.
Tyson was almost sleeping when we got back, he's a bit of a night owl. But then he slept till 3am and then till 6:30 am. He's getting better at sleeping and can now comfortably go 3 1/2 to 4 hours between bottles. He is now drinking 90-95 mls per feeding. He's been very happy again lately and hasn't been on any Tylenol since late last night. And the way he looks into our faces and pulls his mouth all funny tells us that he is definitely trying hard to smile, hopefully we see that first smile soon!
Hope everyone enjoyed a nice New Year's event and we hope to see you all this Sunday!
Thanks to the families that are taking care of our darling children, especially on short notice. If there's anything you need, you can stop by the house and find your way around.
Have a great day everyone!
Brian, Mel and Tyson