"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!

Things that Make You Go 'Huh.'

 Tyson had a really good night last night.  He slept quite well.  As soon as I saw him in the morning I could tell that the swelling in his face had gone done markedly.  His morning weight was 15.6 kg.  Much closer to normal again!  He is also peeing normally again too and his belly isn't as big or hard as it was yesterday.  I knew today was going to be a good day because as soon as he opened his eyes and saw me, I got a big smile :)

Dr. Murphy saw Tyson again in the morning and discussed the day's plans with us.  He consulted with the cardiology department at Sick Kids last night, and they were actually surprised that Tyson hadn't made his way there yet as they were all expecting to see him at  Sick Kids emerg!  After Dr Murphy discussed Tyson's symptoms, the treatment course, and a lot of his blood test results, they decided it would be best for Tyson to be transferred to Sick Kids to have an echo, ECG, chest x-ray, and more blood work down there just to make sure the low oxygen saturations and wet cough are not a result of heart failure.  Dr Murphy said that some of the results from the bloodwork were peculiar and certain things seemed "off" to him.  We have to be certain that this issue is not heart-related and that his wet cough and low sats aren't a result of heart failure.  Here is a list of things that make us go "huh."

 #1.  Tyson's white blood cell count has been normal.  Usually with infection, the wbc levels elevate to fight infection.
#2.  Tyson did not present with a fever at any time during this cold, at home or in hospital.  Every other time Tyson catches pneumonia, he gets a fever at some point throughout to indicate that his body is fighting infection.
#3. Tyson's INR level was waaaay too high and when they tested certain levels in his liver (the liver helps regulate INR levels) they also appeared normal.  His diet can sometimes affect his INR levels, but he was eating pretty much normally for the duration of this cold.
#4. Tyson's chest x-ray from Monday to Tuesday did look slightly worse, and his body began to retain fluids until he was given a dose of Lasix to help him pee.  His tummy was distended for most of Tuesday and he also had watery bowels (sometimes an indication that his body is losing proteins.  PLE is a common side effect of kids with half a heart.)  The blood work taken yesterday did show some decrease in his protein levels.

Taking all these factors into consideration, we have to be certain that it's not a heart related issue and the only way to do that is for him to have an echo done at Sick Kids to compare to his last echo.  So we waited AAAAAALLLLLLLL day for Sick Kids to phone Dr Murphy back as to the course of action.  When they did finally re-connect, Dr Murphy was able to speak with Dr McCrindle directly.  Dr McCrindle (Tyson's primary cardiologist) feels that Tyson can continue healing at Headwaters, but they would like to see him in cardiology clinic and get an echo done next Wednesday.   Dr McCrindle also wants Tyson on a heart medication called aldactazide, a diuretic frequently used in patients with congestive heart failure.  This medication will help Tyson flush out some fluids in his body, and especially help the pneumonia (or whatever it is) clear up.  It basically prevents Tyson from going into heart failure before he can get his echo done on Wednesday.

Other than that, Tyson had a really good day!  His mood is much improved from yesterday.  His INR level was back down to 2.0 this morning so we are slowly getting him back on his coumadin.  He is still receiving his ventolin and pulmicort masks every 4 hours during the day and as needed at night.  The IV meds continue to help him recover as well as the oral antibiotics.  The aldactazide will help him pee some fluid out.

Brian picked the kids up from school today and brought them to visit their brother (and sister Addisyn.)  Tyson was allowed out of his room while his siblings visited over dinner.  We congregated in the lounge room on the pediatric wing and it was nice for him to get out of the room, even though "technically" he should still be in isolation because of his pneumonia.  The nurse let him out because she so nicely gave us her opinion that she doesn't think he's contagious because she thinks it's heart failure anyway.  (Nice of her to say so, seeing as she is not trained in cardiology :)  I have my serious doubts      that it's heart failure, but we will find out more next week.

So Tyson was off of O2 for much of today.  From about 11am till 5pm.  He did the same thing yesterday.  As the day progressed he de-satted more and needed to go back on.  Well he can't leave the hospital if he still depends on the oxygen to keep his sats up!  He is only on half a litre of O2, just enough to help a pinch.  Considering when we got here on Monday, he was on the full 4 litres, half a litre is not too shabby.  Brian is there now as I went home with the other kids, and he says Tyson is off O2 again for now.  He still have the nasal prongs in just in case he needs some help overnight.  He does tend to de-sat when he is in a very deep sleep.

I got a phone call on my cell from Stephanie, the cardiac nurse who sees Tyson in cardiology clinic each time we go to Sick Kids.  She was just checking in to see how Tyson was holding up, how the family is holding up, and to give us the heads up about Dr McCrindle's advice to be on the medication for his heart.  It is wonderful that Dr Murphy was able to consult with the cardiac team at Sick Kids and that they now are building a relationship.  It gives us great hope that not every single time Tyson gets sick he will need to be in Sick Kids.  The more our local hospital gets to know Tyson, the more they can help him, and others like him.

1 comment:

Steph said...

I had a bout of deja vu when I look at those pictures and seen those yellow stripped pjs and a cute dutch boy with nasal prongs on. At a quick glance he looks like our son James.

Praying for you during these days of uncertainty as to what is truly the issue at this time. Keep up the good work on advocating for your son. It's as you said ... the hospital has to get to know Tyson and you and know that you are a parent who understands her child's illness and is in tune with what needs to be done to maintain his health. Don't be scared to stick up for what you believe in order to get Tyson the best care he needs.

All the best as you balance family, home and hospital.