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 AT LAST!

Tuesday, December 23, 2008

"Your love, O LORD, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the mighty mountains,

your justice like the great deep.
O LORD, you preserve both man and beast.
How priceless is your unfailing love!

Both high and low among men find refuge
in the shadow of your wings."
Psalm 36: 5-7

YAY! WE ARE HOME!

Monday morning at rounds the doctors decided we could go home that day! Usually they like to see babies eating well for at least 48 hours before they discharge them but since Tyson had a really good weekend and he was eating well for just over 24 hours, they let us go home earlier. They made us promise that if Tyson stopped eating so well at home, we would re-insert the tube. Of course, we agreed and would definitely do what we need to do in order for him to grow healthy and strong. The doctors also gave us the "option" to stay one more night if we were more comfortable with that. (lol!)
Jim and Debbie were in Toronto yesterday because Deb had an appointment to go over the results from her surgery. They dropped in for a visit and took us out for lunch (ALL of us!) and we enjoyed a nice time with them.
It was nice that we received the news that we could go home while Brian was still around in the morning, otherwise he would have had to drive back and pick us up. So, although I didn't get to phone him and say, "Honey, we're coming home!" , we received the news together and shared the exciting moment together as a family. The kids were jumping up and down in the cafeteria at breakfast because they were so excited!
We didn't get home as early in the day as we had hoped since we had to wait around for a few hours for Shoppers Drug Mart to fill out Tyson's prescription. We made it home last night at about 9 pm. Mom and Dad Spanninga met us at our house since we knew things would be pretty hectic with unpacking the van with three weeks' worth of stuff, getting kids into bed, feeding Tyson, administering his meds, etc.
MAN DOES IT FEEL SOOOOO GOOD TO BE HOME!
And in time for Christmas!
And without Tyson's feeding tube!
GOD IS SO GOOD!
God has answered all our prayers. Tyson not only made it through this serious surgery, he also progressed at a good pace, came home without the feeding tube we dreaded, and in time to spend Christmas with his family! He certainly doesn't look at all like the sick little baby we saw
the day of his operation!
Today was a great day. The morning was VERY busy with getting kids ready, breakfast, medications, etc. The boys are both home from school now for Christmas holidays so it is a bit more work, but Braden and Merrick are both pretty good helpers.
Mom Kottelenberg came over for the morning to help me with a few things around the house and Dad Kottelenberg came over and did some snowmobiiling with the kids. He actually drove over a snow mobile that we can keep! The boys were pretty thrilled about that!
Mandy came over for a visit too so it was nice to have her help with lunch. We've also asked Mandy to do the honours of holding our little guy for baptism and she was pretty tickled about that!
Tyson is continuing to do well. He still does throw up about once a day (instead of every time he eats) but this will get better once the meds take their full effect. Now that the feeding tube is out, that should help a fair bit too. He is a pretty happy baby so far and his brothers and sister love him to bits! He is sleeping in a cradle in the living room until he begins sleeping longer at nights, and then we have to figure out which room we are putting him in.
Tyson is on a number of medications for the next little while. The most important (and frightening) one is Enoxeparin. This is a needle that we inject into his leg twice a day. This drug is an anti-coaggulant (blood thinner) that will prevent his blood from clotting around the BT shunt the surgeons put in his aorta. From what we understand, this drug can be discontinued after his second surgery since the surgeons will then take out the shunt and do something more permanent. (The reason they cannot do something more permanent in the first surgery is because they have to wait till the lungs are more developed.)
It took a while for my mind to get over the fact that I would have to poke my son in the leg with a sharp needle twice a day, but you just do what you gotta do! After I did it the very first time, my eyes filled with tears and Brian was laughing at me because there I was crying and Tyson let out one little howl and that was it! It obviously hurt me more than it hurt him! And tonight when I gave Tyson his Enox, he didn't even flinch! So already he is getting used to it.
Tyson is also on two different meds to prevent reflux (Ranitidine and Domperidone), one diuretic to encourage passing of fluids (Furosemide or Lasix - makes him go pee), Captopril to keep his blood pressure stable (very common after heart surgery), Tri Vi Sol (Vitamins A, D and E) and Folic Acid. The last two he can go off once he starts taking breastmilk and hopefully the other he can discontinue once he is stronger and more stable. The Enox injections would continue though until he has had his second surgery.
Tyson will continue on the portagin feeds until January 13. That is the date the doctors have said I can start breastfeeding again.
Because of Tyson's Enoxeparine injections, we qualify for some home care from CCAC (Community Care Access Centre.) A nurse came today and weighed him, listened to his heart rate, breathing rate, checked his incision site, reviews his eating routines, and basically makes sure things are going well. We are documenting how much he drinks, when he spits up, how many wet diapers he has, etc. since it is important to know that he is getting adequate nurtition and not burning too many calories. We were happy to hear that we would be getting some home care, since this makes us more confident taking him home and being on our own again. It also helps knowing that someone is there organizing things for us, helping us remember to book appointments, and directing us wherever we need to be directed.
We will be heading back to Sick Kids again next Tuesday for some appointments. He will be having another chest and lung x-ray, another echocardiogram of his heart and a visit with the dietician to monitor his weight gain. From there they will decide when his next appt will be, and he will be seeing Dr. Murphy regularly as well.
Then on February 4th he has a full-study echocardiogram scheduled (the same scale one-hour echo he had on that Monday he was admitted to Sick Kids) and a follow-up appointment with the Staff Cardiologist Brian McCrindle.
Tyson now weighs 7 lbs 12 oz, (which is still less than his 3 day old cousin Mikayla!) but in no time he will begin putting on weight and becoming much stronger. We were given a baby scale to use for the first month so that we can weigh him every day and be confident that he is gaining well. He is supposed to take in at least 350 ml of portagin daily and Tyson is taking almost 500 mls daily. So even if he does spit up an entire feeding once a day, he will still be doing fine. the baby scale will also come in handy once I start nursing again, since I can weigh him before he eats and again after he eats to get an accurate measurement of fluid intake.
Wow! I still can't believe I am typing this blog post from my own computer at home! It does take a little longer on dial-up but we are getting high speed soon. The modem is sitting right here beside me but it's just a matter of hooking it up. Soon enough.
Tomorrow my parents are coming for a visit (and will also be swinging around the corner to see their other new grand-daughter!) Brian also hopes to be home early in the afternoon. I am looking forward to a wonderful Christmas season with our FAMILY. TOGETHER. AT LAST!
GOD IS SO GOOD!
Brian and Mel
Braden, Merrick, Kenya and Tyson

9 comments:

Tanya said...

Once again ... awesome, awesome, awesome!!! SO happy for you!! God truly is good and gracious and a loving God. So glad you can all be home together again and can't wait to come visit! But we will ... I promise not to overwhelm you!! Wishing you a WONDERFUL Christmas with your family!
With love, Scott, Tanya & Kate

Anonymous said...

Brian, Melissa and family
I have read every entry just today, through tears,and thanking our Heavenly Father for being with you and Tyson through all of this. Seeing some of the pictures was somewhat hard at times with all the tubes, but thankful that the Lord has brought you this far, and will carry you through this. I wish you all a Blessed Christmas and am glad that you are at home again. You are in my prayers, and may God continue to bless you.
Marion

Linda T said...

Such wonderful news to be home together at last - without the tube! We hope that you settle into routine very nicely, and that all goes well.

Congratulations once again!

Jay & Linda
Owen, Zach & Noah

Anonymous said...

Wow...that is great news! I am sure sleeping on your own bed feels a million times better than on the fourth floor bed! We pray that God will continue to bless Tyson's recovery at home and that all the upcoming appts and tests have positive results. Have a very joyous Christmas celebrating the amazing Gift of Christ's birth. God bless,
Henry and Julia

Anonymous said...

Glad to hear that yous are all home!! Enjoy your time together - can't wait to see the little guy!
God Bless

Gerry & Margaret
Logan, Jasmine and Curtis

Anonymous said...

We are very happy and glad to hear that the whole family is able to be home for Christmas!! We pray that all will continue to go well with Tyson, and may you enjoy the holidays as a FAMILY!!

Gerald & Michelle
Tristan, Austin, Dylan, Ethan & Madison

Anonymous said...

We are very happy and glad to hear that the whole family is able to be home for Christmas!! We pray that all will continue to go well with Tyson, and may you enjoy the holidays as a FAMILY!!

Gerald & Michelle
Tristan, Austin, Dylan, Ethan & Madison

Anonymous said...

Hi
So glad to hear you are together again in your own home! You must be overjoyed! God is so good!
Can't wait to see you all and Tyson on Boxing Day!!
And can't wait to hold him too!

Lea, Derek and kiddies

Anonymous said...

So Glad to hear you are home again.
May everything continue to go well and may Tyson start gaining weight and getting stronger. I cried a few tears of joy when your Mom told me (while we were shopping in Wal-mart. Enjoy your Christmas day together!
Betty Bouwers