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!

Day Four Post-Norwood - Monday, December 8, 2008

"Give thanks to the Lord for He is good,
His love endures forever!"
Psalm 136:1


Wow, it's Monday again already! It is hard to believe that only one week ago we learned the news of Tyson's heart conditions. It seems like so long ago, and yet at the same time it seems like only yesterday. Time is passing slowly but at the same time, our days are full of activity. It's hard to explain. For those of you who have been here, I'm sure you know what we mean.

Tyson has had an AWESOME day! When we saw him this morning, both his chest tubes were taken out. (These were the ones that drained extra blood from around the heart and extra fluid from around the abdomen.) They gave him some more morphine and muscle relaxants for that process because sometimes it can be quite painful for them to have the tubes removed. But at least when he comes around, he won't be as uncomfortable because the chest tubes won't be around to irritate him. It's amazing how much better he looks now that those two drains are gone!

The swelling that naturally occurs after a surgery has gone down a fair bit. Yesterday his hands and feet were quite puffy but today he appears much better. The nurses keep assuring us that Tyson's amount of swelling is very minimal compared to what they typically see after a baby has heart surgery. Often times the entire chest and head are swollen to twice their normal size. We are thankful that his swelling is minimal and that he still looks like a normal newborn, chicken-legs and all!

They have upped his intake of breastmilk from 5 cc's to 8, to 10, to 12, to 15 cc's every three hours (I think this is the same as 15 ml) but he didn't handle the 15 as well. They skipped a feeding at lunch time so that he could digest the leftovers from his previous feed. This milk goes directly into his stomach via a feeding tube that is in his nose. The nurse thinks that the reason he couldn't tolerate the 15 ml as well is because they gave him a bit more morphine before taking the chest tubes out. Sometime morphine can interfere with their digestive abilities.

Today during a routine echocardiogram, they couldn't get a good enough look at Tyson's pulmonary artery so they did a TEE (TransEsophageal Echocardiogram) which is basically an internal echo done by a tube that goes into his esophagus from the throat. They gave Tyson a sedative so that he wouldn't be uncomfortable during the TEE, so as a result he has had another sleepy day. The reason for this TEE was to make sure there is no blood clotting around his heart as a result of the shunt that the surgeon put in during his surgery. The TEE results came back good and there doesn't seem to be any problems with clotting so far. Another reason to give thanks!

As far as the ventilator goes, Tyson is still relying on the ventilator but they are slowly weaning him off of it. He averages about 30 resps per minute, with 12 of them being initiated by the ventilator. In the morning, the ventilator was initiating about 27 of those 30 resps per minute, and by the end of today they had the ventilator turned down to 12, meaning that 12 times the ventilator initiates his breathes and the other 18 times he is initiating them himself! So he is slowly learning how to breathe on his own again and if he continues making this kind of progress, he will be completely weaned from the ventilator in no time! A reason to rejoice!

All in all, Tyson spent a majority of the day sleeping but we are VERY happy with the amount of progress he is making and his day nurse today stated that if they can remove chest tubes and reduce his ventilation all in one day, this is considered an excellent day! We are happy with his progress and praise God for His goodness once again.

It is still a long road ahead, and I am definitely very anxious to hold my son again (it's been almost a week now since we've held him) and it is so wierd watching a nurse change my son's diaper....but soon enough we will be on our way home, the Lord willing.
This morning Rev. Kampen came to visit, Mom and Dad Kottelenberg came for the afternoon, and Gerard and Joc came for the evening. It is a great blessing to find comfort and support in the communion of saints. Thanks for your visits and prayers.
We hope to post some more pictures in the near future, as soon as Tyson's breathing tube comes out.
Have a good night!
Brian, Mel and Tyson

10 comments:

Scott, Tanya and Kate said...

Hi Brian & Mel,
I knew if I waited up long enough there would be an update! Glad to hear you had such a great day today! We continue to remember you in our prayers constantly and are praying Tyson's recovery will continue to go well. Can't wait until you can hold him, feed him and hear him cry again!! Continue to stay strong and take care of yourselves as well.
We'll see you again as soon as possible.
Love, Scott, Tanya & Kate

Anonymous said...

Hey. As a (student) nurse cc is the same as a ml. If hes recieving 10 cc..that means 10 ml. Just to clarify.
Great to hear of his progress. Amazing how God works in wonderful ways.
In my prayers.
Andrea Hopman

Garth and Alida said...

Awesome to hear of all these "little" milestones. It's amazing how God grants healing so quickly. We're eager to come see you guys again soon. Stay strong in the Lord, for He will never fail you.
Garth and Alida
Sara, Noah, Julia, and Nadia
p.s. it snowed in Burlington last night!

Jeff and Karen said...

Hi Brian, Mel & Tyson!
Glad to hear that recovery is going well! We are continually keeping you in our thoughts and prayers. May God's will be done!
love
Jeff & Karen
Joel, Aaron, Jonah, Hanna
ps. We got some snow last night too! And ta-dah NO SCHOOL either!
The piled up shovelled snow at the end of the driveway is about 3 feet tall already!

Eric and Jaclyn said...

Hi Guys,
It's so great to hear that Tyson's recovery is going so well....it must be so exciting to know you can soon hold him in your arms again!! I can't imagine how difficult it must be....
You're still always in our thoughts and prayers :)
love,
Eric and Jaclyn
Carson, Warner, Chloe

Melanie said...

Wow...only a week eh? We are glad to hear that he is doing so well! We hope and pray that you and Brian continue to hold up just as well too! You will get to hold him again soon, seesta! You are in our prayers,
Jay, Mel, Jaidynn and Tyson's little buddy

Betty Bouwers said...

Hello Brian, Mel and Tyson: I just found out about this blogspot from Anne this morning. Thankful to hear everything is going well. We continue to keep you all in our prayers. May the Lord keep you in HIs care and sustain you! May you get to hold Tyson again soon.
It's awesome to be able to keep in touch his way.
Hendrix and Betty

Ed and Rachel Gansekoele said...

Hi Brian and Melissa! Just a little note to let you know that we are thinking of you and praying for Tyson. May God continue to bless Tyson's recovery and also continue to sustain your family during this time of upheaval!
Ed and Rachel Gansekoele

Ray and Nicole Janssen said...

hey there Brian and Mel (and Tyson).. glad to hear things are going ok. You guys are in our prayers and I think of you guys lots. May God continue to guide and bless the recovery and also continue holding you guys in His hands.
"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""

Anonymous said...

Hi Brian and Melissa:
Thanks for taking the time to write an update every day!! Just a little note to say that we are still praying and thinking about you over here very often!
Take care,
Love,
MaryLynne