"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!

Appointments & Schedules

Although we’re enjoying a very healthy summer, it seems like this is the summer of appointments.  Obviously we want to try and get as many appointments in before Tyson starts school full-time in September but this is getting a little crazy and the summer is flying by WAY too fast.  Since Tyson’s past pneumonia in June, he has seen the family Dr twice, the Pediatrician, the cardiologist, the dentist,, two ENTs – one local and one Sick Kids ENT, and the respirologist in Brampton. It’s getting harder and harder to fit in all the Sick Kids appointments into one day.  At Sick Kids, Tyson is followed by cardiology, respirology, thrombosis, ENT, dental, and now we can add immunology to the list too. And that doesn’t include the many different tests that need to be done there regularly: chest x-rays, Echos, ECGs, bone density scans, MRIs, CT scans, nasal nitric oxide tests, sweat chloride tests, and occasionally bloodwork.   We’ve already been to Sick Kids twice this summer and now we have to go next week too. 

Tyson had a respirology appointment on Monday in Brampton.  The respirologist is a specialist who monitors Tyson’s asthma conditions and makes recommendations for how to treat and prevent asthma attacks and his frequent pneumonia.  Since Tyson last saw the respirologist in February, he has had pneumonia twice and was also hospitalized once.  He has been seeing this respirologist for over three years but for the first year, we were just trying to manage the number of asthma attacks Tyson was having.  Once we got the medication dosages accurate for Tyson, he still continued to catch pneumonia and was in and out of the hospital.  The respirologist, cardiologist, and pediatrician kept saying Tyson would ‘outgrow’ the recurring pneumonia.  However, now that Tyson is getting older but still catching pneumonia and having to go on antibiotics frequently, he is starting to run other tests to make sure there are no other underlying problems which could cause it. 

Tyson’s heart defect affects his immune system and puts him at greater risk of catching colds and flus. The narrow pulmonary veins could also contribute to him catching colds/pneumonia more frequently than others with his exact same heart condition.  However, usually by the time the child reaches age 3 or 4, or are post-Fontan, they begin to outgrow the constant illnesses and they should require intervention less often.  Although Tyson’s hospital admissions are fewer in number than in the first three years of his life, he is still on antibiotics about 4-5 times per year and the respirologist is still concerned that the recommended therapies (preventative supplements, saline sprays, chest physio, deep breathing exercises) are not helping like they should.  

Last fall Tyson had a sweat chloride test done to test for other lung diseases like cystic fibrosis, to make sure it’s only asthma that he has and not another lung disease.  Those test results came back normal.  He also had a nasal nitric oxide test to screen for NO levels in his breath (to indicate the severity of his asthma.)  Now the Dr is referring him to the Immunology Department at Sick Kids and wants Tyson to have a full immunology work-up done, as well as a CT scan of his lungs to make sure there isn’t something structurally wrong with his lungs.  So he made the referral and I already got a phone call from Sick Kids about his CT scan.  We go next Thursday already.   It’s actually Merrick’s birthday, as well as two days before we leave for our holidays.  There are so many other things I’d rather be doing on that day, but this summer seems to be the summer of appointments.  I’m not being as productive as I usually am in a summer, because summer is Tyson’s only healthy time so we usually enjoy a medical-intervention-free summer, but because of his recent hospital stay in June it’s just not going to be a typical summer. 

Back in the fall his respirologist recommended we start the physio/deep breathing exercises as soon as Tyson starts coughing.   So I  had called up Tyson’s physiotherapist who worked with him when he was learning to roll, crawl, and walk.  She came for a visit and walked me through how to do different percussion exercises on his lungs to loosen up the mucous and prevent it from sticking to his lungs.  We did these exercises 3-4 times a day.  We also learned staged breathing and deep breathing exercises that we had to do 10 repetitions,  every hour of the day.   But during his last two colds, we didn’t really notice that the physio made much of a difference.    Tyson still ended up on antibiotics 4 times last season in addition to a hospital admission which required O2 and IV antibiotics.

Now the respirologist is recommending that we do the physio/deep breathing every day. The whole routine takes about 20-30 minutes.  When we first started physio with him in the winter, I was thinking that in an effort to save time I could do physio at the same time as while Tyson was having his ventolin mask.  But this proved unsuccessful because for the physio, he needs to be head-down for postural drainage, and with his mask he needs to sit up straight or his medicine won’t nebulize properly.   So the whole routine of mask & physio took 45-50 minutes.  3-4 times per day.  Exhausting.   I feel selfish to think that this is too much time to spend with Tyson in order to keep him healthy, but I am a very busy Mom of five children and let’s face it they need me too.  This routine, on top of all his other routines and meds, takes a huge chunk out of my day.  . 

Once Tyson starts school full-time in September, he will have very long days.  We live in a rural area where we are only 10 minutes away from the school (about 14 km of rural driving.)  But we also happen to live right around the corner from the bus driver, so our kids have very long days on the bus,  getting on at 7:15am and arriving home at 4:50pm.  In the winter with slippery road conditions, it can often be after 5:00pm.  Last year Tyson went to Kindergarten on Tuesdays and Thursdays, so we decided I’d need to pick my kids up from school every Tuesday and Thursday so that Tyson’s day would not be too long.   There are just not enough hours in the day to get all his physio/mask/meds done if he gets home at 4:50pm and needs to be in bed by 7:30pm in order to get enough sleep for him to have energy to last all day at school. 

So my options for the upcoming school year are: 
a)      Sell our house and move closer to the school - and then ultimately closer to Orangeville appointments and Sick Kids appointments (a rather expensive option, but not totally out of the question) 
b)    Write a letter to the Transportation Committee asking them to re-route the buses to give our family less time on the bus (Brian serves on the committee so he feels this wouldn’t be fair to ask) 
c)  Suck it up and pick my kids up every single day so that we have enough time in our day to fill Tyson’s needs (also an expensive and timely option but probably the only viable option.)   

      Prayers would be appreciated for patience as we learn new routines.

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