"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!

Sunday, March 20, 2011

God is our refuge and strength,
an ever-present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging...

The LORD Almighty is with us;
the God of Jacob is our fortress.

Psalm 46: 1-3, 7

The above Psalm is one of my favorites. It was good to sing from part of it in church this morning and also celebrate the Lord's Supper with the communion of saints.

It was also nice to have a bit of a break from the hospital life so that I could go home and spend some time with our 3 other kids too, especially considering I spent much of their March Break in the hospital with Tyson. I was able to get a ton of laundry done too, since I had left a week's worth of laundry sitting at home in baskets....and I also did a quick vacuum to make myself feel better :) Very therapeutic weekend :)

Brian stayed with Tyson this weekend. When I left on Friday evening, Tyson still had the nasal prongs in addition to an O2 mask over his mouth and nose. Brian said it went relatively well overnight, but in the morning the cardiologists/nurse practitioner decided to take away the nasal cannulas altogether since he was tolerating the mask well. So he stayed on the O2 mask that morning and afternoon, but during his nap he started de-satting again. So they decided to put him on a full flow O2 mask...which forces more air into his lungs, and is much noisier. He was on 60% O2 for most of yesterday, but it has been turned down to 50% for all of today. Once it gets down to 25% flow, it is much like having 2 litres of O2 through the nasal prongs again. So if he can tolerate the O2 going down 10% per day....then he should be able to tolerate the nasal prongs back again by Wednesday or Thursday??? Right now his sats are sitting comfortably at about 72.
Because the O2 mask has a relatively short leash, he is tied to the bed a little more now. He seems to be fine to play with his toys in his bed, or watch tv or read books. But it's still good for his healing to get him out of bed a few times a day. When he's chillaxing watching tv, he's got one knee bent up and the other ankle crossed over his bent knee...totally chilled out :)
Tyson is actually co-operating quite well considering he has to keep an annoying mask over his mouth and nose full-time. He can still suck his soother under the mask while he sleeps, and he moves the mask down to take a bite to eat or drink from his sippy cup, and then replaces it over his mouth when he's done. A. Ma. Zing.
It was nice to see his happy, goofy personality back again today. He LOVED that Braden, Merrick, and Kenya came for a visit. I am glad that he is a happier boy now than when I left on Friday. I am looking forward to a good week with him.
As far as company goes, I have visitors coming Tuesday and Wednesday, as well as Tuesday & Wednesday evening. If anyone wants to come up Thursday or Friday, you are more than welcome!
That's all for now :)

1 comment:

Steph said...

I remember when James was in the hospital the short "leash" they had. We eventually got smart and took his O2 extension from home so that he could roam the entire room, take a bath, etc while on his "leash". Since we had homecare we got the extension through his O2 provider, but I wonder if you would be able to purchase one from a local O2 service ... it would certainly make life a bit more bearable and give Tyson more room to roam. We also had our own O2 monitor which made it easier as we could just check his SATs whereever he was at the moment, but they may be kind enough to let him off the monitor for short periods so he can move around a bit more ... or just have him come back every 5-10 minutes or so to check where he's at. I'm not sure if the extensions work with the high flow, but definitely with the regular flow, sometimes you will find you have to bump up the O2 level a bit because of the extra tubing length it has to go through.

Hang in there. It's not easy being isolated, but if you can just remain focused on the positive it will help to get through the long and trying days. We can be so thankful to live in a country that has a hospital like SickKids. As far as isoloation goes you have a big room compared to many hospitals. I wonder if they have (I'm sure they have) ever done studies to show if infection spread is down in a hospital like SickKids since almost all patients have their own room. Hospitals are the perfect place to pick up an infection so it must be helpful that the kids are not in Wards where they can easy spread things. It sucks being in isolation but it's great to know that they do take the precaution to prevent others from getting sick. It's great to hear that Tyson is slowly making improvement, we pray there will be any setbacks and that in due time you may go home again.