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!

ECHO and Cardiology Update


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.

Fall Update

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?
 

The Pre-Plan Plan

I got a call from Tyson's cardiologist on Saturday to go over Tyson's most recent MRI results and discuss a plan for Tyson's future.  It turns out they're not quite in the planning stage yet, but more like the pre-plan stage.

I blogged about the MRI results already, so if you need to review what the MRI found, click here.
I'd rather not talk about it again :P

So, our biggest concern and question for Dr McCrindle is how do we prevent losing function of Tyson's left lung altogether?  The pvs is worse, there's more narrowing in the pulmonary artery...so how do we know he's not going to lose his lung function completely?  Dr McCrindle said that it is very unlikely in this scenario for Tyson to completely lose function of his left lung and that it's unlikely that the lung develops no perfusion.  He also said that the MRI is not exactly the most precise test.  It can give measurements and pressures, yes, but for a full diagnosis of how the disease is progressing you have to compare multiple tests done over a span of time.

When looking at the last 3 or 4 MRI reports, we can see that there is less and less blood flow going in and coming from the left lung.  This obviously concerns us and we don't want things to get worse, so I asked about the possibility of stenting or ballooning the pulmonary veins to widen them and perhaps improve blood flow.  Dr McCrindle feels this is not a viable solution because 9 times out of 10, it needs to be re-stented every 4-6 weeks and this would cause way too much scar tissue. 


He did mention (again) that the current narrowing in the veins is irreversible, they will not just suddenly start to grow,  and then he reminded me (again) that pulmonary vein stenosis can be very tricky.  We are in uncharted territory. There is not a lot known about how to treat pvs. Sick Kids sees about 1 or 2 kids per year with pvs.

Dr McCrindle assured me that the decision-making is always on the table and every time there is a test or procedure which offers differing results, there is a discussion about what to do next.  He said that he plans to pull all Tyson's files and reports together and then he will present Tyson's case to the cardiology interventionists at Sick Kids (the cath lab team) to see if there would be benefit in perhaps stenting his left pulmonary artery, since it also appears to be getting smaller.   There is some evidence that if you stent the LPA, it could prevent further blood flow problems in the small pulmonary veins.

We then talked discussed the Gleevac trial being done at Boston Children's Hospital in Boston, Massachussets and whether or not Tyson can access this chemotherapy drug here in Canada to prevent the progression of pvs.  Dr McCrindle asked me to get a hold of the contact person for the Gleevac study and forward the information on to him, which I have done this morning.  He will contact them to see if there are any reports about results/benefits for children using the drug.  I've been talking to Dr M about Gleevac off and on for over two years, continuing to ask him to keep this therapy in mind if the pvs gets worse, and each time he says Tyson is not at that point yet.  So now that he's asked me for the contact info, I feel like we may be taking things to the next level, if Tyson qualifies and can access the drugs here in Canada.  The ability to afford it may be a whole other story.
At the time that I first discussed the Gleevac, Dr M felt it was not the same type of pulmonary vein stenosis as most of the children in the Gleevac study have.  He felt Tyson's narrowing was more due to other heart anatomy pressing onto his veins, squishing them, and causing them to have lack of flow. But then, during a cath and cardiac MRI in June 2011, it was revealed that unwanted cells are indeed growing abnormally inside his veins, thus causing more narrowing than before.  Tyson only has 18% blood flow from his left lung (even less now!)  At that time the cardiologist recommended intense lung therapy treatments, especially during cold and flu season.


With regards to the decrease in heart function, Dr McCrindle said that although he moved from the 'normal' category into the 'borderline' category, he is still by no means in the 'reduced function' or 'ventricular dysfunction' category.  That would mean congestive heart failure.  Thankfully, Tyson is not there yet.

Dr McCrindle said that his heart function is actually still pretty good considering, and that Tyson's primary problems with his heart are a result of his pvs.  His pvs is causing high venous pressures, poor blood flow in the left lung, and it is also causing his blood to shunt the opposite way across his fenestration (which is also why his sats don't respond well enough when you crank up the oxygen in the hospital.)I asked if pvs is also the cause of his recurring pneumonia, but he didn't think there is a link between the two.  He said from his heart condition in general he has a weaker immune system and that is why he is catching colds and spending time in the hospital.  I do know that once you catch pneumonia, it seems to be easier and easier to develop.  There is no real plan for how to keep Tyson out of the hospital.  Dr McCrindle can't think of anything that would prevent him from getting sick, other than the obvious things.  We do have him on immune system builders, probiotics, and vitamins to build a strong immune system and hopefully keep him from catching every little thing that goes around.

Given all of this information, I asked Dr M if he could foresee there being a need for another open heart surgery in Tyson's very near future, but I could not get a straight answer.  There was hesitation, and then he finally said, "Immediate open heart surgery is not currently on the table, but I have to first talk to the cardiology interventionist to be sure." 

So that is our news.  Nothing alarming.  But no definite plans as of yet.  I will keep you posted when I hear anything back from him regarding the Gleevac or perhaps a trip to the cath lab :(

As always, we covet your prayers for a healthy season for our whole family.





 

MRI results


Tyson’s MRI results are in and the news isn’t as good as we had hoped.  We’re still trying to process what it all means exactly, and the news comes as a bit of a shock to us considering Tyson has been doing so well.

There are two significant changes from his last MRI to this one.  

First, there is more narrowing in his left pulmonary veins and his left pulmonary artery.  As a result, he has even less blood flow going into and coming out of his left lung than before.  His last MRI indicated a blood flow percentage of 18% from his left lung.  (Most healthy lungs have 45-55% blood flow.)  Tyson’s lung now has even less flow than that and with minimal drainage. When comparing the speed of blood flow between his right veins to his left veins, the blood flowing from his right pulmonary veins (his healthy lung) flow 8-10 times faster than the blood from his left lung. 

Secondly, the function of his heart has deteriorated some.  The doctors diagnose this by measuring the ventricle’s “ejection fraction.”  Ejection Fraction determines how well your heart pumps blood with each beat.  Most healthy hearts will have a left ventricular ejection fraction of 55-75% (because the left ventricle does most of the heart’s pumping) and you would be considered in heart failure if it got down to 40% or under.  With Tyson’s heart, because of the Tricuspid Atresia and Hypoplastic Right Ventricle, the left ventricle is the only ventricle that pumps so it would have an ejection fraction of about 60% at best.  Tyson’s heart is 47%, down from 57% on his last MRI.  This is a significant drop, not enough to consider him in heart failure, but enough that his function changed from ‘normal’ to ‘borderline.’   

So what’s next?  Tyson has another ECHO and appointment with his cardiologist again in November, at which time Dr McCrindle will have had ample time to discuss the findings with his team and decide what to do next.  When I asked him about how close we are to transplant, he said “we’re still a ways away.”  We are very thankful to hear that!  But the possibility of another surgery is not entirely out of the question.   He will have another MRI in 9-12 months, as long as he is relatively asymptomatic.

We are trying not to let this news get us down, knowing that sometimes we have to look past the test results and just enjoy the life that we see right in front of our eyes. He is super healthy right now, is LOVING Kindergarten, his antics make me laugh every single day (and sometimes his antics make me holler too!)  and we haven’t seen a decrease in his energy levels compared to before.   So we will keep our chins up and keep praising God for his goodness in Tyson’s life!

As always, we appreciate your prayers. 
Brian and Melissa and family








Tyson's Cardiac MRI - September 20

Tyson was a very brave boy today and he made us so proud by handling things so very well.  He just never ceases to amaze us.  The MRI at Sick Kids went very well today.  We don't have any results yet and it could be a week or so before we hear anything at all, but Tyson was a trooper and showed so much strength and courage today. 

Brian and I decided that we would not tell Tyson any more info than what he absolutely needed to know. If we had told him weeks ago that he would be put to sleep for the procedure or have an IV in his hand, or have to go through a small, noisy tunnel and lay still for an hour, he would have been very anxious and nervous.  His last few memories of IVs involved long stays in hospital and he wouldn't have liked to think about being slid into a small, noisy tunnel.  We didn't want to cause him unnecessary worry (and we really wanted him to sleep well at night too) so for the past few weeks, Tyson knew he was having an MRI and he knew it was to take pictures of his heart but he really didn't know exactly what was going to happen.  He knew that it was a bit of a big deal because his brothers and sisters had to have a sleep over the night before at friends' houses, and we had to leave very early in the morning, but he didn't know he would have to fast or go under general anesthetic.  He had some apple juice to drink on the way down but he didn't really even ask for breakfast. 

When we got to Sick Kids,  we told him that he couldn't have breakfast because he needed an empty tummy for the MRI, and we told him he would be given special sleep medicine through a mask so that he could be sleeping and lay really still for the procedure.  He took the news *really* well and we couldn't have been more proud of how he responded to the information.  He didn't say too much about it but did ask, "Can Mom come with me?" and "You'll be right there?" I told him I would be right there with him while he has the sleep medicine and holding his hand and we'd be there when he wakes up.

Tyson waited patiently for almost two hours without fear or worry.  It helped that there was a Nintendo in the prep room (recovery room.)  So Tyson played Nintendo with his Dad for over an hour until he was finally called in.  He didn't complain once about being hungry or thirsty or scared and he was laughing and having a really good time playing video games with his Dad. 

Once I walked him into the anesthesia room and layed him on the table, he got really scared really quickly.  He kept saying, "I'm scared, Mommy!" and "I change my mind, I don't want to go to sleep."  By the time he had the orange smelling mask over his face it was too late and within minutes he was fast asleep on the anesthesia room table.  I know it's "just an MRI" but the part about leaving your son on the anesthesia table, letting go of his hand and walking away from him *never* gets easier.  It's not easy to watch his eyes as they well up with tears, and the look of panic on his face as he pleads to me with his eyes, "Don't let them do this to me, Mommy!" Thankfully, it doesn't last long and those are memories he won't have because within minutes he's sleeping and the next thing he knows he's awake with us by his side again.

The procedure was just over an hour long and Tyson woke up in quite the tizzy.  He isn't good at being woken up at the best of times, let alone while feeling sick and groggy from anesthesia.  It took about 15-20 minutes of thrashing and screaming and then an IV dose of Gravol to calm him down, and once he actually opened his eyes and realized that we were making plans to take him home, he started to act appropriately again.  Part of his mood I'm sure was the fact that he had an IV in his foot and he probably was thinking he was admitted to hospital and not going home.  We got him dressed and started removing his ECG wires and his IV, and then he snapped out of it and realized he wasn't there to stay for long.  The recovery time after an MRI is much quicker than with a cath because there is less anesthesia involved so patients wake up quicker, and there is no catheter insertion so there's no risk of bleeding.  Once Tyson was awake and had a few freezies and something to eat, we were allowed to take him home.

Overall, we are very proud of our brave boy and all that he has to endure and we are thankful that once again God has provided Tyson with the strength, courage, and peace he needs to sustain his many procedures and tests.  We weren't given any results of his MRI today and it can take a few days to hear anything.  We will likely give the cardiologist a call in a week or so if we haven't heard anything.  We will keep you posted. 
Tyson had to see Mickey Mouse before the MRI.  (Taken with Brian's phone...a little blurry)
Playing Nintendo games made the waiting time very stress-free for all of us.
















First Day of School 2013

Braden - Grade Seven
Merrick - Grade Five
Kenya - Grade Two

Tyson - Kindergarten
Showing Their Excitement for School
Tyson was VERY excited!
One last attempt from Merrick... "Mom, do I HAVE to go?"
Addisyn stays home to help Mommy.  I wonder how much cookie dough will be left to bake into cookies!



Niagara Falls & Darien Lake

Just a few pics of our weekend getaway to Niagara Falls and Darien Lake during the last week of August.
First we did the Cardiac Kids video shoot in Mississauga (pics of that and a link to the website to follow shortly...) 

Merrick took this picture with his camera


We enjoyed dinner at the Rainforest Cafe in Niagara Falls
Taken at Rainforest Cafe with Braden's camera
Time for some craziness at the Ripley's Believe it or Not Museum
Trying to see if we can split our tongue like his

Rides at Darien Lake


Ride of Steel (Braden and Merrick went on that one.)


Some bumper car fun
Addi remained very content in her stroller for a good part of the weekend












It's Almost September...

I've had butterflies in my stomach now for almost a week, just thinking about the fact that September is almost here.  In two days the calendar page flips over and a new month begins.  On September 3 my half-hearted warrior will step onto the big yellow school bus for his first day of Kindergarten and be apart from me all day long.  All day long.  ALL. DAY.  LONG.  I'm so not ready to let him go, and I honestly don't think he's even ready to enter the big wide world yet, but I know I have to let him go.

Tyson on the other hand is SO EXCITED!  The fact that he is so excited is definitely helping me cope, but I still want to cry.  I think most of my emotions are from the anxiety and fear of letting him go, of what could happen when I'm not around, and of what kinds of illnesses he could pick up at school.  But I have to trust that the staff at DACS understands the seriousness of his medical needs, that the school society as a whole understands, and most of all I have to trust that Tyson is always in God's hands, even when he's not holding onto mine.

I wanted to share with you something that I stumbled upon tonight that is making me feel a lot better about it.  I don't know what it was that led me to the big white binder on my shelf containing Tyson's Hospital for Sick Kids medical records, but in any case I started leafing through the pages tonight for the first time in probably over a year.  Whenever Tyson has a medical procedure like an ECHO, ECG, chest x-ray, MRI, cath, or open heart, I ask the records department for copies of his reports.  I like to know exactly what's going on in his heart and how his pressures are changing or stabilizing, or what have you, so that there are no surprises for us down the road. I also like knowing what the cardiologist is talking about and what kind of questions to ask when he explains Tyson's heart to me.

Anyway, this is what I came across in a letter written by Tyson's cardiologist to his family doctor (he updates the family Dr after every clinic visit or ECHO to keep the family Dr up to speed on Tyson's heart health.)

Report to Family Dr on Tyson's June 23 heart catheterization
"At this point in time the surgeons were reluctant to readdress the pulmonary veins through surgery ...however it was felt that he should be referred to the cath lab again to have the pulmonary veins reassessed for any progression of the stenosis...In the meantime however, a longer term plan would involve cardiac transplantation either into a right lung only or with concomitant transplantation of the left lung."  

For those of you who may not understand, this means that there is nothing more that can be done about Tyson's pulmonary vein stenosis, and he will eventually need a heart transplant - which would either be connected to only the right lung (his good lung) or they would do a heart and lung transplant at the same time.

This is absolutely no surprise to us.  We've known about this since that cath in June 2011.  He had another cath in January 2012 - the one when I was 8 1/2 months pregnant with Addisyn - and this cath confirmed that indeed, there was nothing more that can be done for his heart.  When his heart starts to fail, he will need a heart and lung transplant.  This is so scary to put into words. 

But I am pleased to say that it's been two years since the surgical team came to that conclusion.  We've enjoyed two more years with him, without even being listed, without going into heart failure, without any major complications.  Ok, so they can't close his Fontan fenestration because his pressures are too high.  Ok, he's been hospitalized twice since then because of pneumonia.

BUT IT'S BEEN OVER TWO YEARS and he still has the SAME heart! 

Another reason why entering September is making me nervous is because on September 20th, Tyson will be intubated and put under general anesthetic for a cardiac MRI at Sick Kids.  I'm very anxious for the results of this MRI to find out if his pulmonary veins are behaving themselves!  (Echos aren't a good picture of his pulmonary veins - veins that carry oxygen-rich blood from the lungs to the heart.)  More info about his MRI here.
Tyson will miss some school because of this, because if he catches a sniffle the procedure will be cancelled.  I'd really like to have the MRI done and over with and get the results by his next cardiologist appointment in November.  So he might only get to go to his first week of school before our house goes in lock-down mode :(  It's been a long time since we've been in lock-down and I sure don't miss it. 

Please pray for health and strength for Tyson as he starts school, and for health for our whole family so he can have his MRI in good timing.

Pray also that Tyson will not be anxious about his procedure. We haven't told him yet because he hates needles and IVs and every time we mention Sick Kids he thinks we're going there for the doctors to open his heart.  I don't want him to be uptight about it for weeks beforehand.  We will obviously have to tell him something when he realizes he's missing school.

We will pray for the right timing and the right words.

August Update

Tyson has had a pretty good summer.   After he fully recovered from a bad cold in June (one that I thought he would have needed some oxygen to help him get over...but he made it through!) we managed to wean him off his nebulizer mask and switched him over to puffers instead.  He did really well with that and we enjoyed most of July with him only using his aerochamber, which was an awesome time-saving tool in the mornings and evenings.  Instead of a mask that takes anywhere from 10-30 minutes, he would just have a few puffs through his aerochamber each morning and evening!  It was great! 

In July a really nasty cold went around and Addisyn caught it as well.  She is finally getting over it now, and it's been 4 full weeks since she started her symptoms.  Within 2 weeks or so, despite my efforts to keep him away from Addi, Tyson caught it as well. But we weren't as willing to let him ride it out for the full 4 weeks like we can with our other heart-healthy children.

He started symptoms of coughing two weeks ago, so we immediately switched him from his puffers back to ventolin & pulmicort through his nebulizer mask again.  We went camping for a week at Albion Hills with the Kottelenberg family, and during that time he managed ok.  His energy levels were still fine then, and he even learned how to ride a two-wheeler that week!  (A very proud day for us all!)  

At camp, we kept up with his ventolin & pulmicort 4X day and he was coping ok.  Once we got home his cough started sounding very wet and it sounded to me like the virus was settling into his lungs and he was starting to come down with pneumonia.  Having said the same thing during his last cold in May but seeing how he got over that one on his own alright, we decided to give Tyson's body a chance to fight this cold on his own before rushing him in to the Dr.  But by early the next week he had a low-grade fever, was starting to really slow down, and he didn't want to go and play outside anymore.  Once a cold messes with his energy level, his sats drop, and his nailbeds turn blue, it's time to admit he can't fight it on his own and may need some help. Since he's so prone to pneumonia, we knew he'd likely either
a) need antibiotic help if he does have pneumonia
or
b) be admitted to hospital if we don't see a Dr soon.  

Since I know how much fun it is to be in a hospital, on Tuesday I took Tyson in to see his family Dr to make sure he was still ok.  Dr didn't hear any pneumonia specifically, but admitted it's very difficult to hear on Ty because his heart murmur is so loud.  Sats were 86 in Dr office, which isn't horrible for Tyson.  Because of his past history with pneumonia and how wet his cough sounded, and considering how long Addisyn's cold lasted her, Dr prescribed oral antibiotics to try improve his symptoms.  The plan was to try the oral first and if we didn't see any improvement within 24-48 hours, or if his condition deteriorated at all, he'd have to be admitted to Headwaters to start IV antibiotics.  We took him home, prayed the drugs worked and...within 24 hours Tyson's energy levels improved greatly and the cough slowly started to go away.  We're thankful that the oral antibiotics worked so quickly and that Tyson could bounce back without a stay in hospital!  Tyson's pneumonias can sometimes be stubborn and take time to improve even on IV antibiotics and oxygen therapy in hospital, so we're thankful the oral meds worked well this time :)  Especially because we have a very exciting weekend planned this coming weekend! 

Our family has been asked to participate in a promotional video for Cardiac Kids.  On Thursday, our whole family is making the trek out to Toronto for the video shoot where there will be hair stylists and make-up artists on set, activities for the kids between shooting, and snacks & lunch provided.  The video will be put up on their website to increase awareness about Congenital Heart Defects and what Cardiac Kids does for children & families affected by CHDs.  We are so excited to get to participate in this exciting event!  Stay tuned to this blog where I will for sure post a link of the video.  This could be an emotional day for us, because we have to speak about how CHD has affected our family, and everything Cardiac Kids has done for us, so please pray I don't blubber like a fool through the whole filming :)

Then from TO we are heading to Niagara Falls for one night to take advantage of free admission to 9 different attractions, generously donated to us when we left the GKTW village after Tyson's wish trip to Florida in February.

Then from Niagara Falls we travel into the USA to Darien Lake for two days of amusement park and waterslide fun!  Again, park admission generously donated to us when we left Give Kids the World.  

With Brian being so busy with work this summer, he's worked a lot of evenings and most Saturdays too, so we're thankful for the opportunity for our family to get away together.  (Brian didn't even get to camp with us at Albion Hills with his family - I went on my own with all 5 kids and a puppy....so we're both looking forward to this mini-vacay!)

I'm sure I'll post lots of pics soon!

Summer Days

Tyson and two of my other kids were enrolled in 2 weeks of swimming lessons in early July.  Despite the heat wave we're experiencing right now, the weather for the 2 weeks of lessons was not very conducive to a child with a heart condition.  Tyson has a hard time with body temperature regulation, and the weather for the 2 weeks of his lessons was cold, damp, and rainy on all but 3 days. As a result, he was not a happy camper during his lessons.  He was cold and blue and did not have a very good time at all!  But his teacher Alison made the best of it and handled him very well. 

I managed to take a few pictures on one of the nice mornings we had.  

Blowing bubbles
Starfish
This is how Tyson spent most of every lesson.  He was cold and blue and not very happy.  His teacher made the best of it, and laughed because despite his tears, he still did everything she told him to and even said a tearful 'thank-you' at the end of each lesson, even though it was clear he was not enjoying himself!
He was too scared to jump off the diving board, so Caely, his teacher from last summer helped him down while Alison caught him
For his last lesson we let him take Mickey Mouse off the diving board with him.  I'm so thankful the weather was warm on his last day.
Here is Alison keeping Mickey Mouse dry as they swim across the pool to the diving board
All done with lessons and trying to warm up
Kenni

Kenni jumping off the diving board
Merrick diving over a noodle
It's too bad that the weather wasn't extremely warm for swimming lessons.  He really does enjoy the pool at home.  The kids are in it EVERY day!  The scuba gear was a small investment considering that it keeps the kids entertained for literally hours every day.
My scuba kids.  (Devon in the background)
Tyson with big brother Braden. 

Summer is going very well so far.  Tyson is healthy, so what more can we ask for?  We enjoy life so much more when he's not coughing and we're not worrying about whether or not he has pneumonia again.

The kids spend most of their time poolside, or on the trampoline. They like to have the sprinkler running underneath the trampoline as they play mini-sticks or bounce around.  Even Addisyn enjoys the slippery, wet sprinkler.



 They also enjoy spending time with our new puppy Tazer.  He is a pretty easy-going puppy so far. 


Isn't he SOOOO cute?!?!

Braden sure adores him

And Tazer sure adores Braden too!

Braden trying to teach Tazer to come down the deck stairs.  He goes up but won't come back down.
The heat and humidity of this week has pretty much worn us all out, but for a kid with asthma AND a heart condition, imagine how much more tired he is! Tyson suffered a bit of heat stroke late last night, after three days of extreme humidity.  Any asthma sufferer can attest to how difficult it is to breathe when the air is so thick.  Combine that with a heart condition, and that's a brutal combination.  We let him go to his soccer game on Tuesday night to see how he would do, even though there was an extreme weather advisory.  We thought it was a good opportunity to see if Tyson really knows when he needs to slow down.  Well, he was only able to play about 10 minutes of soccer before he was completely out of energy.  The first half wasn't even over and he was by my side because he needed a break.  We dosed him up on ventolin to see if that would help but he sat on the sidelines for a long time. Then when he finally went back on the field again he only lasted a few more minutes before he gave up entirely.  I'm glad that he knows his own body well enough that he knows when he has to slow down.  He loves soccer so much, and I didn't want to let the other kids play and not let him go, but I am still glad to see he knew enough that his body couldn't handle it.  

Wednesday was another very muggy day, and Tyson spent most of the day sluggish and red-faced.  We spent most of the day in the pool and we try to hydrate like crazy on these days, but then we had the misfortune of our well pump breaking down.  So, we had no water!  Brian called a few uncles for help/advise and Uncle Willy came over to help dig out the well pump.  It turns out that the hose had corroded from the pump and Willy happened to have a spare part at home to fix the problem. So after a few hours of work and minimal cost, our water pump is fixed and is now running again.  We're so thankful that the problem wasn't too serious!

Today is a laze-around-the-house kind of day.  The kids are watching a movie downstairs while I sit and blog.  Last night Tyson spent several hours tossing and turning in his bed, crying and complaining of a sore tummy.  He complains of a sore stomache from time to time, and we keep a close eye on him to make sure the symptoms are nothing more than just that.  (Fontan kids will develop liver problems so we're always on the alert for weird symptoms or complaints of pain in that area - or the chest area.)  After several hours of him not sleeping and either Brian or I going to his bedside to comfort him, I gave him some Tylenol to knock him out. Later on he did throw up a little, but not much for what you'd call the flu.  I finally crawled into bed with him at 5am and then we both slept till 8am.  I'm pretty sure it wasn't the flu because the first thing he asked for in the morning was his hot chocolate, and then proceeded to wolf down a pancake for breakfast.  He's definitely not himself yet but I'm almost positive it was heat stroke.  We're working hard to hydrate him better today. 

We're hoping and praying that the humidity calms down very soon.  These poor heart babies never catch a break.  In the winter it's nothing but colds, flus, and pneumonia, and in the summer they can't breathe through the humidity :(  Praying for a break in this heat soon.

Melissa
































Three Wonderful Milestones

When you have a child with serious heart defects, every small milestone is worth celebrating.  Depends what you call a 'small' milestone, I guess.  Today we are celebrating three wonderful milestones. 

One is that Tyson has been discharged from the Wee Talk program!  We said a tearful, bittersweet ‘good-bye’ to his speech/language pathologist this afternoon.  We’re very sad because we LOVED him and will surely miss him. This is a man who would lay on the floor beside Tyson as they played their ‘boy’ games together.  He knew exactly what made Tyson tick,  he knew how to push Tyson’s buttons to get him to focus, to get him to continue on with the learning.  Most of all he made learning fun!  As hard as good-byes are, we are SO THANKFUL that Tyson no longer needs to see a speech therapist and will not be referred to CCAC for speech therapy once he starts school!  This means we have one less therapist and one less appointment every month!  I’m so proud of Tyson and how hard he’s worked on his sound and word articulation and how well his language skills are developing and improving. 
The other thing we’re celebrating today is that Tyson has also been discharged from the Infant-Child Development Program.  Obviously, once a child starts school, they would be let go from the Infant Child program as the name suggests.  But to top it off, Tyson will not need further referrals to any other programs.  He definitely has some areas we need to work on with him, particularly his social skills, self-help skills, attention span, memory, impulse control and mood changes J  But we’re getting there.  One step at a time.  The psychologist who signed off on Tyson’s report did indicate that, considering his complex medical history and the number of procedures he has undergone, she is impressed with how well he’s doing.  Man, that’s music to a Mama’s ears J  Tyson’s Infant-Child Development Worker, Chris, will visit us one more time in the fall, and we will indeed be sad to say ‘good-bye’ to her too.  She has been coming into our home almost monthly since Tyson was 10 months old.  She has poured out her heart and soul for Tyson’s well-being, monitoring his development to make sure he’s on the right path, and giving encouragement and support where needed.  She has showered Tyson with love and with gifts, and she even visited when Ty was hospitalized in March/April.  She also facilitated “The Spirited Child” workshop that I attended to learn how to cope with ‘spirited’ kids like Tyson.  We both love her.  (And I happen to know she reads this blog…so to Chris: THANK-YOU FOR EVERYTHING!  Thank-you for loving Ty, and accepting him, and working with him when he wasn’t always willing to work with you.  You will always have a special place in our hearts and you will be greatly missed! 

One last thing we remember today.  Today marks 18 months that Tyson has been free from any heart procedures, surgeries, or interventions.  Of course this doesn't include his regular tests like the ECGs, Echoes, x-rays, etc - those are very common still and will very much be a part of his life forever. But we also pray that someday we can celebrate 18 months hospital-free, or 18 months oxygen-free!  If the LORD wills it, we'll get there someday too.  
Eighteen months ago today,  Tyson had his last heart cath procedure (his ‘last’ but probably not his ‘last.’)  I remember that day so well.  I was 38 weeks pregnant with baby #5 and I'll admit it:  I was a STRESS-CASE.  How could we possibly be having another baby, knowing that the likelihood of Tyson needing a transplant was so high?  For the first three years of Tyson's life, there was *always* another surgery looming in the future...always another heart cath needed to assess his heart status or attempt a fenestration closure...always another hospital stay right around the corner.  What was I doing having another baby?  And Brian and I were both exhausted with all kinds of extra appointments for Tyson and for our unborn baby.  Stress levels in this house were an all-time high.

But look how God has so richly blessed us!  Addisyn turned out to be the best thing for our family (doesn’t He always know what’s best?)  She was a very happy baby right from the start, sleeping well though the night, and very happy during the day.  Tyson was hospitalized when Addisyn was four months old, but Tyson was able to stay at our local hospital so it was much easier for Brian and I to take shifts at the hospital, and my Mom took some night shifts too.  So it all worked out, as it always does. God has a way of doing that, doesn’t He?  Thank-you Father!

I’m getting side-tracked.  Back to the 18 months.

Let's face it.  Eighteen months without any heart procedures is a long time for a kid with Tyson's complex anatomy.  18 months without a general anesthetic.  18 months without a breathing tube shoved down his airways.  It's not just the HRHS which would be reason for multiple heart procedures, but Tyson also struggles with pulmonary vein stenosis, which is our biggest concern right now.  His extremely narrow pulmonary veins cause high pressures in his heart and lungs, which is why his fenestration can’t be closed.  The high pressures also cause his blood to ‘shunt’ through his fenestration left-to-right instead of right-to-left as it should.  The cardiologists aren’t really sure how or why it seems to be working for him, but for now it is working for him.  For the past 18 months, God has given Tyson a 'break' from any open-heart surgeries or heart cath procedures.  And our whole family has been given a break from that worry and stress.  (Ok, so the two hospital stays in the past year haven’t been very fun but at least he hasn’t had another heart surgery.)  We are SO thankful.  
 Speaking of procedures….

UGH.

Tyson has to have a cardiac MRI at Sick Kids in September.  MRI gives a better picture of how his blood is flowing in and out of his lungs.  Compared to open heart surgery, this is a cake-walk.  But since Tyson is so young, he will have to be intubated and under general anesthetic for this.  I asked (begged) the MRI department if they could just sedate him with chloral hydrate (same stuff they used for his echoes when he was a baby) instead of intubating him.  The chloral hydrate makes him sleep for 4 hours and he wakes up a very angry drunk…but at least they aren’t intubating him and messing around with his airways!  Tyson is very prone to pneumonia, so anytime they mess with his airways he’s at risk again.  But MRI department told me they need Tyson to lay perfectly still and calm for over an hour, and at one point during the test he’ll need to take a very deep breath and hold it for about 15 seconds.  If he was sedated with chloral, he can’t take a big breath.  If he’s intubated, they can control his breathing and can get the pictures they need.  *sigh*  I can;t picture Tysonlaying still and calm as they slide him into a tightly enclosed tube...and apparently it's very loud in there too.  Tyson would not be good in this situation at all.  So it looks like on September 20th, he will be intubated and put out again.  Which also means we have to keep him healthy for the procedure, so if he catches a cold they will cancel the MRI and re-schedule.  He’ll likely have to miss a week or so of school to ensure good health prior to the MRI.

Then in early November Tyson will go back to Sick Kids for a bone density scan, some blood work, and an appointment with the thrombosis team.  Kids who are on long-term Coumadin are at risk for bone density so they need regular scans to monitor his bones.  They usually start scanning when they turn 5.  The scan itself is much like an x-ray, so he won’t need sedation or anything for it.  Tyson won’t be too worried about that.  The blood work is another story though.

Then late in November we go back to Sick Kids again for his regular six-month cardiology appt, Echo, ECG, etc.  We have to wait over two months to find out results from his cardiac MRI.  Last MRI he had (exactly 18 months ago!) he had 18% blood flow to his left lung.  I am really hoping and praying that the number does not get any lower.  18% is a really crappy number.  They did try to repair his pulmonary veins when he had his last open-heart in December 2010, but it didn’t go as well as planned, and it didn’t do much to improve his blood flow.  We’ll see what the next MRI in September shows and I’m sure we’ll need prayers as we wait 2 months to find out the results.

Not wanting to end this blog post on a sad note, let me repeat again why I started this update today.

Eighteen months procedure-free!  No more Speech therapy!  No more Infant-Child Program!

God is good.