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!
Brian and I left Sick Kids today with a huge sense of relief and our hearts full of joy at the results of all of Tyson's tests today. The great news is that there are no plans to stent Tyson's left pulmonary artery or pulmonary veins right now!! The cath lab team wants to stay far away from that area as they feel it would do more harm than good. Every time they mess around in one area of the heart it causes scar tissue, and too much scar tissue is not good for long-term prognosis. The plan is to have another MRI sometime next year, compare results, and make a plan then if things go downhill. Tyson is doing very well from a cardiac stand-point (good energy levels and sats of 87) so they're going to leave him alone for a while :) You don't know how happy that makes us!!
Tyson's dental examination showed only one cavity, so they don't want to do dental surgery for one cavity. Because of Tyson's respiratory and cardiac issues, anesthetic is risky so the benefits must outweigh the risks. In this case, they feel he can handle it with a bit of laughing gas. We have to come back sometime in the new year to fix the cavity, and we hope and pray he wakes up on the right side of the bed that day!!
Tyson hasn't had any nosebleeds in almost 2 weeks, so he didn't even have to see an ENT today which means they decided not to cauterize anything today. Dr McCrindle says that since it's been almost 2 weeks, it's likely that there are no damaged vessels in his nose and that nosebleeds are normal for kids on coumadin, particularly in his age group. So basically we just have to deal with it.
We're looking forward to not having to go to Sick Kids until the new year. It feels like we've been there a lot lately. We will have a dental appointment for Tyson in the new year, and an appointment for Addisyn to look at a few things too, but Tyson doesn't have to go back to the cardiology ward for another six months :)
I would like to share with you one of those awesome 'God moments.' Today on the cardiac floor at Sick Kids, we ran into one of Tyson's Respiratory Therapists who works at Headwaters Hospital in Orangeville. Except today she wasn't wearing scrubs and running room to room to help little children with their oxygen needs. Today she was rocking a crying baby, her own face stained with tears. I still can't believe it, but her newborn daughter was born with a large VSD (hole) in her heart and today 'just happened' to be the day that she was having open-heart surgery to repair it. Nothing happens by chance, and today God allowed our paths to cross so that Brian and I could offer hope and comfort to a new 'heart family' as they prepared to hand their baby off to the surgeons. I know that seeing Tyson as a happy and healthy five year old (when she usually sees him sick and weak) must have offered her some real hope for her baby's future. What's even more amazing is that her surgery was originally scheduled for Monday, but it got canceled and rescheduled for a day that we would be there to give support. Praying for baby Natalie Rose.
I thought it's high time I do another update on Mr. T. Tyson started school in September and is loving every minute of it. It did take time for him to adjust to the classroom routines and activities, and he is definitely exhausted when he comes home but he is thoroughly enjoying the activities and talks about all the things he's learning every day. The teacher says he comes to school with a smile on his face and seems to be enjoying himself. I've been picking my kids up from school almost every day that Tyon goes (Tuesdays and Thursdays) so that his day is not quite so long. Since we live right around the corner from the bus driver and our school's bus routes are quite rural and long, we are one of the first families on the bus at 7:15am and last ones off at 4:50pm. With school commencing at 8:40am and finishing at 3:25pm, this equals almost 3 hours on the bus every day and a 9 1/2 hour school day! So I make sure that on Tuesdays and Thursdays I either bring the kids in to school in the morning, or pick them up in the afternoon. Judging by how tired Tyson is in the afternoons, I know that this is a practise I will have to continue with for quite a while until he settles in completely and adjusts to the long days, if indeed he ever will. The days are long for any healthy child, let alone a child with a heart condition.
Academically he is doing well, keeping up with the class ok (I think?) and is even starting to blend sounds into words. Not bad for 2 days of school a week! He still has big challenges with eating and it sounds like his teacher is almost as frustrated with it as we are ;) We will keep trying. He's probably the lightest one in his class at 34 pounds and is close to the shortest one too. I am not used to that at all, seeing as my other kids are all taller than average and have good meat on their bones. We know that Tyson's heart presents many challenges when it comes to calorie intake, and many, many heart kids we know are fed via G-tube so we are thankful he can take his calories in orally. But man, it's a fight!
As far as colds and flus, Tyson has had two very minor colds since starting school. We had a bug hit our house last week which affected Braden, Merrick and Kenya but surprisingly it didn't hit Tyson. We have him on multi-vitamins, extra Vitamin C, probiotics and immune system builders, as well as his regular asthma meds and heart meds. I am hopeful that the supplements are building his immune system so that he can avoid the hospital this year.
We got the results from Tyson's bone density scan (called a BMD) that he had at Sick Kids last week. Kids who are on long-term coumadin are at risk of developing osteoporosis in their bones. The BMD is measured in T-scores. A normal T-score is 0 or above. Tyson's T-score was -1.5. (Once you hit -2.0 you are considered osteopenic (pre-osteoporosis) and once you hit -2.5 you are considered osteoporatic.) Tyson's score is low, not dangerously low, but he does have what we call 'low bone mass.' This means that Tyson is not getting enough calcium and Vitamin D from his diet alone, and his multi-vitamins obviously don't contain enough of them either. So we started to supplement him with 1000 UI Vitamin D and 300mg calcium per day, in addition to what he gets in his diet and other supplements. This kid now has enough medications, vitamins and supplements at each meal time to serve as his dinner alone. Maybe that's why he doesn't eat much ;) The next scan will be in another year or two, depending on how well he is managing. If he breaks a bone between now and then, they will do another scan sooner.
The biggest challenge we have been facing this fall is Tyson's nosebleeds. It's very common for kids on coumadin to experience nosebleeds, but Tyson has been struggling with them off and on for over a year, particularly in the dryer seasons. We're doing all the right things to prevent the nosebleeds, but unfortunately with his blood being 'thinner' than others, once one nosebleed starts it takes a long time for the nose to heal completely and his bleeds typically last 20-40 minutes long. We've been adjusting his coumadin dose to try to achieve a goal INR level of between 2.0 and 2.5 but this is very difficult to do with a 4 year old who doesn't always eat consistently and gets sick from time to time. When we saw the thrombosis team at Sick Kids last week, I thought the coumadin dose decrease was successful becase we hadn't had a nosebleed in over 8 days. But lo and behold, the very next day I was called to the school (twice!) to help the teacher control a nosebleed and calm Tyson down.
Here at home the bleeding is causing him to wake through the night, have decreased appetite, upset stomach, and vomiting. With the lack of sleep and lack of appetite, Tyson is also lacking in energy, and it's also very difficult to maintain therapeutic INR levels if he isn't eating well. I've been in contact with the thrombosis team at Sick Kids again, and she has referred Tyson to an ENT (ear-nose-throat specialist) and told us to see his family Dr ASAP. He saw Dr Cormier today to have a look inside his nose and make sure he's still ok (which he is - but he thought Tyson may be coming down with a cold based on the treasures up his nose ) Dr Cormier also wanted him to be seen by an ENT (ear nose throat) specialist but feels he may be a little out of Dr Riddell's league. So the thrombosis team is referring him to ENT at Sick Kids, and they are hoping he can be seen on November 27 when he goes to see the dentist and cardiologist. (He will now be seeing 5 different departments at Sick Kids and it is getting harder and harder to get appointments all on the same day. This will mean more trips to the city this winter.) It's possible that on Nov 27, an ENT may be able to cauterize the vessels in his nose that are causing problems for him. We're so thankful that for the most part, the staff at Sick Kids really try hard to have multiple appts filled all in one day rather than us going back so often for every little thing.
Please pray that this is the answer because we are about *done* with nosebleeds, night-waking, hand cramps from holding his nose closed for so long...and the interference that it's causing in Tyson's sleep and day-to-day living. He's learning to stay more calm during the bleed, but when he's at school it's difficult because he really just wants him Mommy. I am so blessed to be a stay-at-home Mom who can 'zoom' out to the school when needed. I also have the opportunity to volunteer at the school every Thursday afternoon and fill in a yard duty for staff as well as help out in various classrooms for the afternoon.
Please also pray that Tyson's appt with the dentist, cardiologist, his ECHO, and potential appt with ENT go well on Nov 27. And also pray for patience as we wait for information from Tyson's cardiologist with regards to the plan for Tyson. We're praying it's a plan of 'watch and wait' rather than a 'plan of action.'
|Last time we were at Sick Kids, the Toronto Maple Leafs were there too. They signed some autographs for us and gave Tyson hat and mittens, which he didn't take off all day.|
|Please can I wear them to bed, Mom?|