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!

Fontan Surgery: December 7, 2010



This morning before surgery...











Sporting the hospital gown...








Getting sleepy...








Almost time to say good-bye...








10:23 am
Praise the LORD, Tyson finally made it to the OR! That's farther than he made it last time :) Passing him on to the anesthetist was not too traumatic for him or us. After taking some sedative medication, he was in a happy, drunken stupor and kept giving me silly grins. Once he finally went to sleep peacefully, they took him from my arms and carried him into the OR. Even though we had to let go of him, we know that God will never leave his side. The surgery is expected to take between 4-6 hours and we will post an update as soon as we can. Considering it's going to be a very busy, draining, tiring day, the update may not come until later in the afternoon/early evening. We will update on Tyson's progress by adding on to this blog post.
Please keep praying for our little fighter, and of course the hands of the surgeons.

12:37pm
Dr VanArsdell just came out to tell us that he has completed both the Coles procedure and the Fontan. YAY! The left pulmonary veins are still small, Dr. V could not shift the veins as far as he had hoped, thus he couldn't make the openings as wide as he had hoped, but he did the best that he could. We will wait and see what happens. Once the scar tissue from this surgery has completely healed, it is "conceivable" that he could try again to open them further, but we won't know if that possibility would become a reality for quite some time. Time will tell. It's so tough not knowing exactly what God has in store for our little guy but we entrust him into our Father's hands, knowing that our only comfort in life and death is that we belong to our faithful Saviour, Jesus Christ.
Tyson still has to be stitched closed, and then they hope to take the breathing tube out. It will still be a few hours before we can see him, since closing the chest takes time and he also has to be stable in CCCU before we can go in. Please keep praying :)

2:45 pm,
We just saw Tyson for the first time. He is stable in CCCU, but he had to be reintubated in OR because he wasn't quite ready yet. I hate seeing a breathing tube in his mouth...I was hoping he'd pass that milestone with flying colours. He was still pretty sedated when they tried extubating, so they think he was just still too sleepy to breathe properly on his own. The settings on the ventilator are quite low, so he is doing most of the work on his own. They will give it a try again later this evening, after he wakes up a bit more. These trials with extubation/reintubation are tricky, because he has to be awake enough to breathe well on his own, but with Tyson's temper, we don't want him too alert that he starts yanking at tubes and wires. The breathing tube is in his mouth, which is a good sign. Usually with prolonged intubation, they insert through the nose. So at least we know the plan is to extubate quickly.
His O2 sats were 92 when we got there! We've never seen numbers that high with him ever! Dipping to high 80s over time. His blood pressure was a little low immediately post-op, so he is on appropriate meds for that too.
Right now he looks pretty sorrowful. Sleeping peacefully and not aware yet of what just happened. But he's full of chest tubes and pacing wires, a catheter, breathing tube, and other things. Slowly but surely though, these things will be gone.
Keep praying for his stability :) and wisdom for the doctors/nurses caring for him.

7:25 pm
Tyson is slowly waking up. He's a Kottelenberg, it takes him a while :) There are a few computers right in the CCCU waiting room, so it is MUCH easier to get to a computer to update regularly than the last surgeries :) So you can expect to hear from us frequently! And we LOVE reading your comments, so please don't be shy and let us know you're checking in :D
The plan is to extubate as soon as he is fully awake. Of course, I want him to hurry up and wake up so that we can sleep peacefully tonight knowing he is breathing well on his own. So I was coaxing him and taunting him a bit this afternoon.... "Tyyyy-sonnnnn! Wake uuuuuup!" He would frown, shake his head, and say "No." Even though the breathing tube is in and we can't hear any sound coming from him, I knew he was saying "No" because we can lip-read well :) LOL

We're in pretty good spirits. Right now we are laughing at Brian's Dad making friends with complete strangers. We met a pastor and his wife here in the CCCU waiting room, so Brian's Dad figures that they've got a lot in common and yaps on and on about his trip to Israel last year. We all cracked up pretty good when he asked the pastor if he's ever ridden a camel before :)

It's been nice having my parents and Brian's parents with us all day. No one's in a hurry to go home; they're all hanging around because they are waiting to see Tyson without the breathing tube.

Once shift change is over and we are allowed back in the room (8pm) then the first thing on their agenda is to pull the breathing tube out. Hopefully Tyson responds well to this. His sats have dropped to the lower 80s, but no one's sure why yet. We're not panicking quite yet. Low 80s are still good, just not the best numbers yet.
Tyson is on bloodthinners (heparin) and epinepherine (heart med) and they've stopped morphine for now in an effort to get him to wake up more. If he needs more morphine later, they can give him some directly into an arterial line, and it will take effect within about 30 seconds. For those of you who know Tyson well, you know that he'll certainly let us know when he's in pain :)
That's it for now. More later tonight, once the breathing tube it out!


9:25 pm

Ok last update for the day: Tyson is extubated and doing well! Saying "owie" a LOT, and asking for something to drink. But he's not allowed anything to drink for another few hours until they are sure he won't need to be re-intubated. Now that he is awake and agitated, it's time to give more morphine, so he will hopefully calm down and be more peaceful. We didn't actually get to witness the extubation, even though we wanted to experience this milestone with him. During shift change, (7-8pm when no parents are allowed in the room) he woke up with a vengeance, and couldn't reach the breathing tube because his hands were restrained. So he started sliding his bum down the bed and bending his head down lower as he slid so that he could grab at the tube. The nurses and respiratory therapist had to act fast and get the tube out quickly before he self-extubated and damaged something in the process! So when we came in to see him at 8 pm, he was breathing on his own and saying "owie owie." Poor guy. The first night will be the roughest. It should be clear sailing from here, provided that he continues to make upward climbs :)

God is good, God is good, God is good, God is good!

G'night!

Mel:)

37 comments:

Sara said...

We lifted you up in prayer with our family around the dinner table last night and prayed for the surgeons too. I can only imagine Hannah giving Samuel to the Lord...you are just like her in your faith...and He will bless you, Brian, Tyson and your family. How does a parent get through 4-6 hours of waiting??

Aukema Family said...

praying all morning :) and will continue to over the next hours and days...... praying he gives you and Brian PEACE. love ♥ Tyson's farm buddies across the road....

Sandra Allen said...

So glad to hear he made it through the surgery well!! We will be keeping all of you in our prayers.

Joanneke said...

Its so good to here that Tyson's surgery went well so far! I'm sure you're anxious to see how he will be afterwards. "Be still and know that I am GOD!" Ps. 46.

Keith said...

We're thankful that things went well, Melissa. God is good!

Margaret said...

Glad to hear all is well so far - God is indeed great! Always praying; thanks for the updates! God Bless
gm

Mrs Heather Lodder said...

That is blessed news Melissa!!! I am very glad that he had surgery today and that things went well!! Very glad Tyson is doing ok as well. Continuing to keep Tyson in my prayers as he recovers! Praise God from whom all blessings flow!

Tanya said...

Could barely read through because of the happy tears. I'm so glad and thankful to hear things are going well and will pray that they will be able to extubate soon!! We will definitely keep praying especially now for a speedy and uncomplicated recovery! Kenya is doing well; she and Kate are playing nicely today!! When you are able, give Ty an extra squeeze for her and all of us here. Love you!

Anonymous said...

What a blessing that everything has gone so well! Praying for continued mercies and a good recovery. Betty Bouwers

Anonymous said...

Praise God!
Keeping you & Tyson in our prayers.
Love you!
k

Anonymous said...

We are so thankful with you that everything went well. We pray that God will continue to give Tyson healing in the coming days and also strength, patience and peace to the rest of the family. You are always in our prayers!
Grant & Marg

Anonymous said...

Praying all continues to go well. P&H Jonker

Anonymous said...

Yah! Go Tyson! So happy to hear that all is going well with your little man! May God continue to be with you all.
Take care you guys:)
Rob and Jen

Henry and Jules said...

Brian and Melissa,
We too are so thankful that God has blessed Tyson with surgery. We are so thankful for great drs and nurses. We pray that God will bless tyson with a speedy recovery and that you both will have much peace and strength in the coming days while you are apart from the rest of your family. "Praise God for He is good, His love endures forever." Praising God with you and praying for you all. God bless!
Henry and Julia

Anonymous said...

Thanking God that surgery could go on as planned and all is well. Thinking and praying for you all every day!
Hope Tyson recovers well and quickly!
Love you!
Lea and Derek & family

Anonymous said...

We are glad to hear that all is going well so far!! We are keeping you in our prayers every day!! Hope that Tyson recovers quickly!!
Gerald, Michelle and Family

Jay and Mel said...

Can't wait to hear that the breathing tube is out!!! Continuing to pray for strength and comfort--glad that you are remaining positive throughout all of this. (And we had a good laugh when we read about Brian's dad making friends with complete strangers...not Uncle John?!? LOL!!!) Love you!!!!! The girls send (gentle) hugs to Ty and to you all!!!

Anonymous said...

Tears of joy and happiness are shed here at home. Great to hear that all went well. Much strength in the days and weeks ahead.

Love you all very much!!

Garth and Alida, Sara, Noah, Julia, and Nadia

Joanneke said...

Its so good to read that you are all in good spirits. I hope you'll be able to keep up the positive attitude and confident trust in God. I'm glad you have a computer handy because I'm checking 10 times a day!!

Anonymous said...

Thanks for the updates! We're so happy that everything went well today. Praise God! - Andrew & Brenda Vanwoudenberg

Anonymous said...

YEAH, so glad to hear all has and is going well so far. Praying for good sleeps for you all especially Tyson :)"Do not be anxious about anything but with prayer and petition with thanksgiving present your requests to God."

Aukema family said...

YEAH, so glad to hear all has and is going well so far. Praying for good sleeps for you all especially Tyson :)"Do not be anxious about anything but with prayer and petition with thanksgiving present your requests to God."

Mel said...

AWESOME!!!! I am pretty impressed with Ty's creativity!!!! Praying that his "fighting spirit" and the Lord's grace helps him to continue to get better!!

Tanya said...

LOVE it!! Everything sounds really good and YOU sound great!! We are praising God for his blessings. So glad that things are going well and hope and pray that they will continue that way. Love from all of us here at the Bouwers' home!
(Sorry I missed your call but glad to hear you got to talk to Kenni.)

Mrs Heather Lodder said...

Wow Tyson seems to be a smart kid!! I am praying for comfort for him tonight as this has got to be scary but GOOD news otherwise on all of this!! God is good!

The Wallis Family said...

God is GREAT! I will keep praying for a speedy recovery. Tyson looks so good for being a few hours after heart surgery!

Blessings from Eugene, OR

Venus

Anonymous said...

Praise God! We are so relieved that Tyson did so well today! He's been in our prayers all day and will continue to be so. Tyson even looked good in the post-op picture!
Thinking of and praying for all of you!
David,Melissa & Girls

The Simmons Family said...

I'm so glad to hear the surgery went well! He looks AMAZING post op. What a champ. Praying for a quick recovery!

Anonymous said...

God has heard and answered so many prayers, and He will continue to do so. God is faithful, God is good!
Arlene
PS The boys had a great time yesterday after school! Lots of laughs and even giggles!

Amy said...

Hi Mel,

Praise God they were able to do both Coles and Fontan. We are continuing to pray for a quick recovery with few complications. Tyson seems to be doing great so far. Hang in there, I'm sure as he's less sedated that it will be a little harder on him and on you and Brian.

Still praying,
Amy

Anonymous said...

Last night at supper we remembered Tyson (again!) in our prayer but we were not able to read the later updates from yesterday!! So happy to hear that things have gone well thus far....How great is our God!! May God bless him also has he recuperates! May God also be with you as parents and with your other children as well. Thinking and praying for you....

Pete & Sheila & children

Anonymous said...

God IS good!
We are really glad you could have both sets of parents there! - would have loved to be a fly on the wall listening to Uncle John too!!
Hugs!
karen

Anonymous said...

That is awesome Brian and Mel, glad to hear he is doing so well. May God continue to bless his recovery and the work the doctors have done.
Ray and Nicole

Anonymous said...

Dear Brian and Mel:
Great to read that everything went so well!! God is good, indeed!! We will keep on praying that Tyson continues to have a good recovery! Looking forward to the next update!
MaryLynne

Sara said...

What an answer to prayers! Glad you have been able to laugh and smile so soon. Praying for smooth sailing through the recovery and Christmas as a family. Thanks for the speedy updates.:-)

Sandra said...

Brian and Melissa,

So thankful to hear that all has gone well so far. Praises to our Heavenly Father! May He carry you in the next steps of Tyson's recovery and praying for a speedy one. It's wonderful to witness your faith through all of this.
Sincerely,
Pete and Sandra deWitt and family

Anonymous said...

Brian and Melissa
Glad to hear everything went well!! We will continue to pray for Tyson's recovery so that you may be able to bring him home before Christmas:)
Love Rob and Anne and family