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!

Wednesday, March 16, 2011

Rejoice in the Lord always.
I will say it again: Rejoice!
Let your gentleness be evident to all.
The Lord is near.
Do not be anxious about anything,
but in every situation,
by prayer and petition,
with thanksgiving, present your requests to God.
And the peace of God,
which transcends all understanding,
will guard your hearts and your minds
in Christ Jesus.
12:30 pm

Tyson is stable in the O2 nasal prongs, though his sats are still only very low 70s. When he gets upset or he has built-up mucous, they dip into the high 60s. Usually a good cough can clear him up and bring his sats up again.

There is talk about him moving to Step-Down today. They have taken a chest x-ray first, because the air entry into the left lung doesn't sound quite right yet. So we have to wait for the chest x-ray to come back ok first.

The nasal swab test that was done yesterday came back positive for Influenza A, which is basically just a flu/common cold. I'm still a litle skeptical that a common cold can actually wipe Tyson out THAT badly that he gets put into Critical Care!? I am not holding my breath for a clean x-ray....it seems to me there has to be something more going on. The reason I feel this way is because he's been coughing for so long. But hey, I'm not a doctor, what do I know? :) They are keeping him on the antibiotics anyway as a precaution, which I am ok with since his left ear was infected anyway. Hopefully the antibiotics will help get rid of all the garbage he has in his system right now.

The Ng tube I protested against came out last night at our request. The nurse on last night was kind enough to sympathize with our opposition and took it out as soon as he woke up from a short nap. Now to get him drinking and eating more. He is pretty puffy from retaining fluids and will be started on Lasix to help him pee some more of the fluids out.

That's the update for now. Tyson is relatively co-operative and content. He loves t.v. so that is a plus! It makes it easy for us to leave him at night when we retire to get some sleep. Last night we told him, "Mom and Dad are leaving now to go to sleep, we'll see you in the morning ok?" And he goes, "Otay." Then we give him the speech about listening to the nurses and no screaming, and be a good boy. Apparently last night when he asked the nurse for a drink he was very polite and asked for, "Juice. Please," and then a "Tan-too." That's my boy :) He is coping well, but has expressed his desire to go to the playroom on 4D and play with the Thomas trains :) We tell him he can do that as long as he keeps coughing when we ask him to.

5:00 pm
TYSON MADE IT TO 4D! (CARDIOLOGY WARD FLOOR)

The chest x-ray came back looking a little worse in the left lung than his x-ray from yesterday. Despite the x-ray, he was still considered stable enough to graduate to the cardiology ward floor. He does sound very phlegmy and is receiving physiotherapy on his lungs twice a day. He has a very good cough so that works in his favour. He also started to eat again today so once his strength builds up from the sustenance, I anticipate that he will continue to clear out the lungs on his own.

Tyson is still pretty sick and has been lying flat on his back since Monday. I am hoping that tomorrow I can get him out of bed and bearing some weight on his legs? Today he couldn't even stand on his own when it was time to weigh him. He is still pretty O2 dependent so he will probably be confined to the bed for a few days yet. Hopefully in a few days, once he has a bit more strength we can take him to the playroom that he so badly wants to go to!

I looked up Influenza A online and it appears that one complication from it can be pneumonia. Hopefully he can fight hard and keep the pneumonia away.

Tyson is sleeping peacefully now but I probably won't get another chance to blog again tonight. Brian left about an hour ago to go back to work tomorrow. It's so nice to have him around when Tyson is in Critical Care. Once Tyson is more stable, than I am more stable :)

Thanks to everyone who is helping out with our kids. It's their March Break so it's important that they have time to unwind and have some fun. Tyson sure knows how to get sick when the older kids are home for holidays, doesn't he? LOL

If you need to get a hold of me, you can call 4D directly at 416-813-6901 and we are extension 3632. The best time to call is mornings between 9am-1:00pm. If there is no answer, I may have stepped out to grab a bite to eat, so you can try again a little later. Tyson would probably sleep in the afternoon so it would be best to wait till after 4or 5 pm to call in the afternoons.

That's all for now!
Mel:)
10:00pm
So it turns out that because Tyson has the flu, he is not allowed to go to the 4D playroom even if he was strong enough. (Right now he's not even strong enough to lift the Thomas train I borrowed from the playroom for him...so it would be a while before he could play anyway.) Tyson may not use the playroom until he is completely asymptomatic, which will likely mean he won't get to play there until it's time to go home. It's going to be a long stay for me...but at least we have a room with a view to the outside world so there is some natural light coming in. I feel bad for him because in CCCU we were bribing him that the more he can cough, the sooner he will go play with the Thomas trains in the playroom....and now he won't even be able to go there :(
He is being isolated because he is very contagious and our door must remain closed at all times so he doesn't spread his infection to others. When in isolation, nurses must wear a gown and mask every time they enter our room (same as in CCCU) because they don't want to spread Tyson's germs on to other patients.

Tyson on CPAP in Cardiac Critical Care Unit




Mommy shushing him as they poke him for blood



Once he was off CPAP it's easier to hold him.
Back in his Mama's arms, where he belongs :)
Sleeping peacefully
Trying to rest on 4D

4 comments:

Tanya said...

Good to hear some positive news! Hope the X-ray comes back clear even though you doubt it. And don't doubt your thoughts / instincts -- remember Dr. Mom was the one that got him checked out at a week old when the ER Dr. wanted to send him home!!
We are praying for you and for healing for Tyson so you can come back soon. Praying for the other kids as well and hoping they are having an okay week. I'd like to invite Kenni over to play but need to wait until Kate & Alex aren't sick anymore. Don't want to pass anything back to her.
Take care. T

Yvonne Kampen said...

We will keep you and Tyson is our prayers.
I know what a roller coaster you are on- but in a different way.
What a blessing to have the strength, support and love from our Father in Heaven.
If there is anything I can do, let me know.
Yvonne Kampen

Anonymous said...

Good to hear you're on 4th floor already and hoping and praying for a quick recovery.
Too bad it took Tyson getting sick for Wyatt to have Merrick over...I've tucked them into bed, but am enjoying listening to the three boys goofing around and giggling. As long as one can handle the stupidity, it's fun to let them go once in a while (I'm sure I'll pay for it tomorrow)....
see ya
Hetti

nicugradsmom said...

Sweet boy...fight off those bad flu germies !!!! Will be praying for a short stay!!!