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 One Post-Fontan: Wed. December 8




"You are my God and I will praise you;

You are my God, and I will exalt you.

Give thanks to the LORD for He is good;

His love endures forever."

Psalm 118: 28, 29



10:00 am

Praise God, Tyson was on 2 litres of O2 last night since they extubated, but since then has been weaned off! His sats were in the low 90s on O2, now in the mid 80s off O2. They like to see above 85 at this time.

His catheter was removed last night, as well as one central line in the neck, and one arterial line in the arm, and one art line in the foot. He still has one central line in the neck and one art line in the hand. The art lines are used for drawing blood which they still do regularly, and meds are administered in the central line at this time. He is still on blood thinners and pain meds (and I'm not sure about the heart meds...) They've also removed his hands from the restraints (brave nurses) and he seems to be much happier with free hands. The restraints are not cruel; they are just velcro hand bands with ribbons tied loosely to the crib rail, loose enough that he can move his hands around but tight enough that he cannot grab anything to pull out. His three chest tubes/JP drains remain in for a day or so, until they are draining minimally. His chest x-ray this morning looked good....no chylothorax suspicions yet....YAHOO! (I was a little concerned about that one, since he's had it before and it is pretty common post-Fontan.)

Tyson still has his pace maker attached, which is setting the correct pace for his heart. This is something he didn't need post-op with his other surgeries, but it is common after a Fontan. I remember him always having the pace maker wires still attached with the other surgeries, but his heart never needed the pace maker. After the Fontan, it takes a bit for the body/heart to get used to the new direction of blood flow, so sometimes the heart needs some help pacing itself. This morning, it is on back-up mode, so if his heart rate drops a bit, it helps speed things up a bit. The heart rate is "set" for 140. It is allowed to go faster than that, but if it dips much lower, the pace maker kicks in and gives the heart a jump start.

He is a little grumpy, with reason. The nurse said he slept well last night but did stir easily by other children's cries in the night or other noises. There are three other boys in the room with him, two are 3 yr old boys and one is an 18 year old.

When I arrived this morning, he right away started crying, "Mommy! Mommy!" He just wants Mom to rescue him from all his troubles. The Ng (feeding tube - which was never even used once) is out, and he is taking some fluids by mouth but they have to start slowly. He is having one ounce every hour or so, but only clear fluids yet. Later today maybe some milk and mayble some food. They want to make sure he is sitting up well and coughing out any mucous that is building up before they start him on milk, which would only worsen mucous. He sat up for a few seconds in bed, with me holding him up, but he din't enjoy it at all yet, he kept saying, "owie." Hopefully later today I'll be allowed to get him out of bed and cuddle with him.

Write more later...


TYSON IS IN STEP-DOWN ! ! !

How wide and long and high and deep is the love of Christ!

The tears of joy were just flowing out of my eyes and down my cheeks today as we walked alongside Tyson's bed as he was wheeled into the Step-Down room on 4D :)

Step-Down is the "in-between stage" between Cardiac Critical Care (ICU) and the cardiac ward floor 4D. In CCCU, there is one-on-one nurse care. The Step-Down room has about 4-6 patients with a number of nurses that float around from bed to bed. Tyson will receive slightly less care here than in CCCU, but more care than in his own room on 4D.

I am so not used to this feeling! With past surgeries/pneumonias, Tyson suffered from prolonged intubation so he spent most of his time in CCCU and then a short period of time on 4D. This time he has spent less than 24 hours in CCCU, but we anticipate a longer stay on 4D than he is used to. Normally once he moves to 4D, he is so strong and well that he goes home within a few days of being there. But no, we don't expect to be home in a few days. Yes, Tyson is doing very well, but he is still very sick. He is back on O2 as needed; usually while he's sleeping they can turn it down, but when he's awake he needs a bit of extra help. Both the central lives in his neck are gone, one art line in his arm is gone, the PIVs in his hands and feet are gone. He is basically down to an art line in the wrist, and one PIV in the foot. Soon we hope to administer his meds orally too, once he is tolerating his drinks/food well. We've ordered him some soup for lunch, but only if he keeps his fluids down.

Tyson is currently suffering from a bit of post-op pain/hunger/anger issues...he just guzzled 4 oz of apple juice in about 30 seconds flat and then he whipped the cup when it was empty. Then he thrashed himself around the bed for a while, yelling "More apple juice!" So his true colours are slowly shining through :) Brian and I had to leave the room because the nurses think he would probably behave better for them than us. We left to grab some lunch while the nurses try to coax him to sleep.

We hope to update again at the end of the day.

Thank you all so much for your prayers! THEY ARE WORKING! Keep lifting them up :)

8:00pm

Tyson is having a difficult time keeping fluids down, so they have him on a fluid only diet for now, until he tolerates fluids better. Juice, jello, soup broth, but no milk or anything to heavy yet. He took in too much juice too quickly, even though we were trying to pace him. The end result was a total bed change, clothing change, and one load of laundry. Usually we leave him in hospital gear and use hospital bedding until much later on...but we brought him his pillow from home, pajamas, blankie, and hockey blanket so he'd feel more "at home." Well that was a dumb move!

There is still something going on with his heart rate. The pace maker is still attached and set on back-up mode, so it can't go lower than a certain rate. The ECG revealed that the upper atriums in the heart are not pumping as hard as they should. But it can take a few weeks for the heart to regain its proper sinus rhythm. There is the possiblity of pacemaker surgery in the future if his heart doesn't figure it out on its own. I'm not sure what exactly that means as far as length of stay here, but we are not worried about it quite yet. I'm so not even worried about that yet, because it's only just ONE day post-op. Besides that, being in Step-Down is 20 times better than in CCCU. It's lighter and brighter, the rules are less stringent, it's less stressful, and it obviously means he's getting better :)

The plan is to move him along to 4D in his own room tomorrow sometime. But it would all depend on Tyson's dependancy on the nurses, and the availability of rooms.

His mood isn't as bad as we had anticipated, which is a blessing. He does get grouchy when he's only allowed to drink a certain amount. They've given Gravol to calm his tummy, and hopefully it helps him keep the fluids down too. He still sleeps a fair amount, but it woken easily by noises from others. That's a big disadvantage to sharing a room with others. It is difficult to see Tyson like this, demanding things from us that we can't give him, and he has smacked me in the face a few times....and I couldn't really discipline him for that one! LOL The ONLY time in his life he will be "allowed" to get away with terribly inexcusable behaviour! It's all so understandable considering what he's been through. And only just yesterday.
Someone has asked about the pvs and how the Coles went. I read some reports today from Ty's heart cath done in August. There appears to be no stenosis in the rpv, but the lupv is severely stenosed and the llpv is mildly stenosed, giving only 18% blood flow to the left lung. The Coles was not as effective as Dr V had hoped, but it's better. (Anything is better than 18% blood flow.)

Tyson has been sitting up a little bit in bed, but he mostly complains that it hurts so it only lasts a minute or so before he pushes back on my arms to lay back down. We did get a few minutes of snuggles today, so I enjoyed it while I could.

That's it for tonight. He's fighting on, so we're happy for God's answer to prayers there. We are so thankful that his life has once again been spared, and God is granting us more time for us to enjoy him. Keep praying for a smooth recovery and that he will start tolerating foods soon. And please pray that his heart will begin pacing itself properly on its own, so that he won't need pacemaker surgery in the future.

Thanks!
Brian and Mel:)






16 comments:

Mel said...

So exciting to see him progressing so well!! He is doing great...and you both are doing great!!! Continuing to pray that things keep progressing so well!!
Love you!

Sara said...

I just want to cry when I read the 'owie" word. When he couldn't talk he would cry but couldn't tell you how he is feeling...now he can express his pain to you but you can't make it all go away. Hope you get to cuddle him soon.

Joanneke said...

I can't believe how quickly things are progressing. You'd think after open heart surgery he would be so much less responsive, but I guess 2 year olds are pretty resilient! We praise God with you for making everything so well so far!!

Anonymous said...

I love getting these updates. It helps us to "live" right along with you! God bless you all!
Marg

Aukema Family said...

Praise God for all these great updates happening for Tyson,praying all continues to go well this aft/eve... if this continues you'll be home in days :)

Uncle Jerry & Aunt Rita said...

thanks so much for keeping us all posted. It's good for us to know what exactly to add in our prayers of thankfulness and for future healing. AMAZING how it is going thus far! SO much to be thankful for.
All the best to you and Brian AND the whole family.
*hugs*

Anonymous said...

Love You Mom

Leanne said...

Thank you for having this blog Melissa! It is so good to hear he is doing so well. Our thoughts and prayers continue to be with you on this difficult journey to recovery for all of you. We love you and will continue to pray for a speedy recovery for Tyson, you and your family.
With lots of love
Nathan and Leanne

Tanya said...

Happy to hear all the great news. Keep hanging in there and gather up your strength to get you through the rough patches. We are continuing to pray to our Awesome God for healing and for patience and understanding for Tyson. Hugs from us.
Scott, Tanya, Kate & Alex

gerryandmargaret said...

Awesome!!!! So glad to hear of all this progress - may it continue! glad Tyson is feeling like himself and yeah i guess it's a good thing that 2 year olds are stubborn:)way to go Tyson!

Anonymous said...

Wow. I can't believe how well he is doing. Out of CCU so quickly. I am very familiar with everything you are saying and understand how very encouraging these things are. Things really couldn't be going better. How do they feel the Cole's procedure went? How did his Pulmonary Veins look?
Melanie Gillis

Anonymous said...

Hey Brian and Mel,
We've been eagerly running to our computer among these busy days (Streetlight) to get your updates - your joy shines through in your writing - so thankful that things are going well. Keeping you close in thought and prayer,
Garth and Alida and family

Anonymous said...

So glad to hear Tyson is progressing so well! Praise the Lord for His boundless mercies!
Betty Bouwers

Anonymous said...

Hey Brian & Mel

Glad to hear that everything is going well. Sounds like Tyson is letting his true colours shine through... guess he just wants to live up to his name as a "fighter". We'll continue to pray that everything will continue to go well and that he will have a speedy recovery! Praise God!

Jaron & Erin

Anonymous said...

Glad to hear that everything is going well for Tyson!! We will continue to pray that all continues to go well and he will recover very quickly!!
Gerald, Michelle and Family.

Sara said...

Good to see his energy and determination...enough to lash out at you! He's strong and a fighter. So happy that things are going so well and praying there are no setbacks.