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!

Tyson's Own Room on 4D

Wednesday, December 17, 2008

"But for you who revere my name, the sun of righteousness will rise with healing in its wings." Malachi 4:2

TYSON AND I HAVE A PRIVATE ROOM ON 4D!!!!

Last night after I had just finished updating Tyson's blog, I got the exciting news that we would be moving to a private room afterall! So Tyson did get to skip the "Step Down" room and we were moved into a private room at about 9 pm on Tuesday night! It isn't as big as the rooms at the Orangeville hospital and the bed is more like a couch. But nonetheless it is quiet and private, I get my own
bathroom, a phone, and a tv, but more importantly, I get to be near
my son all day and all night.

It feels so good to finally be involved in his care and as dumb as it sounds, I was happy to get up with him overnight and even happier when he awoke on his own crying for food this morning at 6:20 am.

We have a room right by the rising sun, so when I opened the blinds this morning, we enjoyed the beautiful rays of sunshine beaming into our room! It was a gorgeous and bright morning! I was happy to see God's glory in the beautiful sunshine too.

If you need to get a hold of me, you can call the Sick Kids floor 4D direct line at (416) 813-6901, press '2' for patient information, and then ask for Melissa in room #6. I should be in there most of the time but if you don't get an answer I am most likely out for a coffee, lunch, or on the computer updating my blog! If you don't get me right away, try again in half an hour or so.

Tyson is doing pretty well. The bottle feeding is going ok, but not spectacular. He takes between 20-30 mls orally before I have to add the rest to his Ng tube. The head cardiologist on this floor says that Tyson has a lot of work to do before we can go home, mostly just his breathing. She says he is still breathing quite fast and this can only get better once he gets bigger and stronger. He needs to keep eating and start putting on weight. The only thing I can do for him, as far as that goes, is help him eat on time so that he is taking in enough calories in a day, and maybe skip the bottle feeding in the middle of the night and put the portagen directly into his Ng tube, so that he doesn't work too hard at nights and can save his energy for eating during the day. She thinks he has a lot of work to do yet before we can count on going home for Christmas. I am a little disappointed by this news but I know that Tyson has surprised us in the past, so you just never know! I don't want to get my hopes up too high but I am still praying that we can spend Christmas at home.

Today I enjoyed a visit from Joanneke and her mom. I spent the rest of the afternoon quietly enjoying my son, smothering him in kisses, and praying that he continues to eat well.

On rounds this morning, the doctor mentioned that we would go with a 4 week course for the portagen, instead of the 6-8 weeks we were originally counting on. She will give me an end date so that I have a date in mind for when I can begin nursing again. I am excited to hear that news and am eagerly awaiting this day! This will also help with his weight gain.

It is very possible that if Tyson doesn't figure out how to drink enough from a bottle, he may still have the Ng tube once he goes home. I have already been taught how to do the feedings through the tube and how to flush it out afterwards, but I will also need to learn how to place the tube once it needs replacing or if it ever gets pulled out. This involves inserting it through his nose and making sure it gets placed into his stomach and not his lungs. I would have to buy a stethoscope so that I can hear the little "pop" that can be heard when a small amount of air is forced into the Ng tube. It's kinda neat to hear the "pop" but the thought of having to insert the tube myself is a little overwhelming! I guess I will need to learn, unless Tyson can figure out how to drink enough through the bottle.

Please continue to keep Tyson in your prayers, asking God that Tyson can learn how to drink well, so that he can put on some weight and come home soon! Please continue to pray for the rest of Tyson's family who need patience and strength to endure whatever God has in store for him and us.
Till next time,
Mel:)

8 comments:

Tanya said...

Loving the pictures of Tyson with those bright eyes!! Keep them coming. Can't wait to see you both tomorrow!! Tanya

Eric and Jaclyn said...

that's great you have your own room!
love the pics! hopefully i can figure out a time i can come and finally see you!
love, jac

Aukema family said...

Yeah great news, in the room with your son... How awesome is our God ! the Aukemas

the Kampens said...

"Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:23. How exciting to hear of the new mercies every day! Blessings and love to you all ~ Ed and Gwen and kids

Melanie said...

I LOVE LOVE LOVE that picture of Tyson...WOW he looks like Braden! I am so glad he is doing so well and I can't wait to see you both tomorrow morning!! YAY!

Anonymous said...

We were alerted to this blog by my Mom. Wow you've been through a lot in the last while! A blog is certainly an amazing way to record your experiences and keep others informed; nice job:)! Each entry is a beautiful testimony to God's love and faithfulness and mercy! And what a blessing that you may witness of your hope and comfort to those around you. In this way God is praised in many ways over and over through all this. We will keep you all in our prayers and wish you daily strength to continue on the path God has laid out for you. May He grant improvements each day and good health to Tyson! Greetings from Miriam and James Slaa and kids, Smithers, BC.

marge said...

Hi mel good to hear that all is going so well. So great that you have your own room. 'Little' gains are so gratefully received when you're going through hard times. One of the things that glorify God in these situations without even needing to think about it. We'll keep praying for you and your little guy (as well as the rest of the family). Mark and Marge

Anonymous said...

It is exciting to hear of Tyson's progress and he appear's to be doing very well. We will continue to remember you in our prayers as our children continually remind us to pray for Tyson.

Kindest Regards,

Gerard and Joc.