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 nine 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!

Settling into Routine

The LORD is my light and my salvation-
whom shall I fear?
The LORD is the stronghold of my life -
Of whom shall I be afraid?
Psalm 27:1

Life at home has been wonderful so far! Wonderful, and BUSY, but wonderfully busy :)
Tyson settled in nicely right away. He is definitely a home-body and loves to just spend time in his own surroundings. Once we got home, he needed ibuprofen a few times, but has now been off even that since yesterday morning. He finished off his antibiotics for the infected incision (which is looking and healing great) and he is down to Lasix twice a day now, instead of three times a day. He still takes his Warfarin (anti-coagulant) at dinner time. It's a pill we crush and then hide in a spoonful of yogurt or apple sauce.
The minimal fat diet has been a bit challenging in some regards. He does like fruit and bread and cereal, so breakfast and lunch aren't too difficult. But cooking dinner is a bit different, since he is only allowed low-fat meats like chicken breast or turkey breast (and some fish, which we don't typically eat a lot of.) The thing is though, I cannot cook the chicken or turkey with the skin still on, since the fat from the skin still soaks into the breast. So when I cook a chicken, it has to be without the skin, and not drizzled in oil which I love to do. I thought originally that I could make a pasta casserole and just pick out the meat for Tyson, but he is not allowed to have anything that has been cooked in meat, margarine, butter, or oil. Tonight I am making a chicken fettuccine meal for the family, but will have to boil his chicken breast separately while I fry up our chicken with oil. And Tyson will have to have plain pasta, as the sauce has too much fat in it too. Since he is a typical toddler when it comes to eating, there are times when he doesn't like what we're eating so we serve him a slice of bread instead. So I am hoping he will be fine with plain pasta served as a finger-food, and boiled chicken breast. It is taking some experimenting, and it may mean I have to cook two separate meals at time, but we will figure it out. I bought some boneless skinless chicken breast when it was on sale at No Frills, and I'll boil up some extra and freeze it for those days when we have something like meatballs or ham, so we can use our chicken reserve for Tyson that night. Tyson can eat low-fat deli meats like turkey breast, so we bought some of that and he likes that as well.
The trouble isn't so much with the meals themselves, it's more the snacks. Quite often we serve fruit for a snack in the afternoons, so there we're fine. But we often do crackers and cheese too. There is only one kind of cracker that Tyson can have, and I have yet to find a fat-free cheese. (I found fat-free cheese slices, but not sure if he'll eat "plastic cheese.") I am finding out that a lot of the snack foods that Tyson CAN have, our family CAN'T have, because we follow the Feingold diet (no artificial flavours or colours.) Like licorice, marshmallows, ju-jubes, gummy worms, gummy bears, etc. When we weigh out the options, it looks like this holiday season there may be a few exceptions when it comes to following our Feingold diet. So people just might have to excuse the behaviour of our children for the next little while.
Also, there are NO cookies and only one type of cracker that Ty can have. So I tried some fat-free baking yesterday, and while I find the taste is compromised when substituting the butter/oil/eggs, the kids haven't complained. But at least I have a few varieties of cookies I can serve Tyson when his siblings would like that for a snack. So far the older ones have been great at lunch time about what they can/can't let Tyson see them eating on their bread. If they want peanut butter, cheese, chocolate spread, etc. they make their bread at the counter behind Tyson's back and he isn't any the wiser. So far :) Tyson can have jam and honey on his bread, but he actually quite often prefers it with nothing on it anyway. And he can have "Sunday soup" but we just take out his serving before adding the meatballs, and boil it on the stove right beside our pan of soup. So Tyson can still have his "loop and bum." (Soup and buns...one of his favorites, like a true Dutchman!)
As far as Tyson's JP care, it is going well. It is really quite easy to empty and drain, and I have to call Sick Kids with the volume amounts every morning, so they can keep track of when is a good time to pull the tube out. So far he is draining an average of about 130-150 mls per day, which is still way too much yet to consider pulling it on Thursday when we go for post-op clinic. So it looks like we most likely will be having his JP "hangin' around" at Christmas time. Family members, please excuse the sight of it, I don't think it's really that bad, but some kids might think it looks weird. Oh well, better than still being in the hospital!
I was also trained on how to do a dressing change, in case he needs it. They really wanted us to go to Sick Kids on Monday for them to do a dressing change there, but I was not about to let anyone spoil our plans to take Braden and Merrick to the TML game! So Mom and I did the dressing change together on Monday afternoon. It's not really the re-dressing part that's difficult, it was more the un-dressing (taking the existing dressing off.) The JP tube is covered with gauze, then wrapped in a circle around the tube insertion site, and covered with lots of gauze and tape to secure it in place, so that it can't accidentally get pulled out.
I was really concerned for a while about the possibility of Tyson being re-hospitalized over Christmas because the minimal fat diet still doesn't seem to be decreasing the amount of drainage. In the hospital, they give the minimal fat diet 6 days to kick in, and if it still doesn't decrease the draining, they make Tyson go NPO and feed him with TPN intravenously. (IV feeds, no eating or drinking allowed.) But when I talked to Kathleen (the nurse practitioner who got us the tickets) last night, she said they try very hard not to have kids in the hospital over the holidays, so they would probably skip the TPN stage and go straight to the steroids. I haven't done much research on the steroids yet, so I don't know what they are and how they affect Tyson, but I think they are supposed to minimize the draining so that rotten JP can come out. Judging by the drainage amounts for the last few days, it looks like we're headed in the direction of having Tyson on steroids. I can report more on that after Thursday's post-op appointment.
So Thursday's post-op appointment is going to be another busy day. The older 3 kids are going to my Mom's on Wednesday night to sleep over, because we need to leave here at 6am to be at Sick Kids by 8am. Brian is taking another day off to come with me, since it's going to be such a busy and involved day. There's chest x-rays to look at what kind of fluid is still building, blood work to check his INR level (to make sure the Warfarin is the right dose for Tyson's body,) ECG (checking in on the AV block, lower heart rate,) Echocardiogram (non-sedate, checking heart function), appointment with the nurse practitioner, and IF THE DRAINING SLOWS DOWN, then Tyson would need a bolus of morphine before the JP pull, so that would take about an hour or so too.
Last night, my Mom cared for Tyson (and Kenya) so that Brian and I could take Braden and Merrick to enjoy the Toronto Maple Leafs' game at the ACC. They lost the game, but it was great to experience TML tickets, box seats, free food and drinks, and the memories that go along with it all. The boys were thrilled when John Mitchell and Jonas Gustavsson came up to our box to sign their hockey cards for them. It was a pretty personal and emotional night for us, since we were given the tickets by Jonas Gustavsson himself, who donated the box seats and the food/drinks to Cardiac Kids. Gustavsson has a personal reason for doing so much for Cardiac Kids, and he wished Tyson well when we told him Ty's story. Thank-you Jonas Gustavsson and Cardiac Kids! If you want to see more pics of the evening, check out the Cardiac Kids facebook page, we hope to post some pics on there soon. (Once I get a chance...it's been busy here today and it's time for me to sign off and get going around here again.)
Thanks for checking in on us, we're doing quite well! We'll post another update on Thursday night, after the post-op appointment.
Blessings to you all,
Mel:)



Tyson had to wear a jersey too, even though he's not quite old enough to come along (this time)



Yep, life IS good :)



Posing with Jonas Gustavsson after the game. He kindly signed autographs and posed for pics. For more pics of our fantastic evening, you can go to my facebook profile :)


2 comments:

Sara said...

Our family thanked God that you got to go to the game. He is faithful and good and is taking awesome care of Tyson...and so are you. Glad you got that treat and time with your guys. :-)

Joanneke said...

Thanks for the update, Mel! I was wondering how things were going, but I wasn't sure you wanted phone calls. We are so thankful that things are still progressing well, and we look forward to hearing how it goes tomorrow.