This is how they get a chest x-ray on an infant down at Sick Kids - crazy eh? Poor dumpling hates this contraption - can't blame her though really.
We were down at Sick kids again today for Olivia's latest checkup. She had another sedated full echo cardiogram, and ECG and chest x-ray. We met with her nurse, her resident, her cardiologist, her dietitian and a med student as well as a new research team that is studying the genetics of heart disease in children. In a nutshell, the results were good.
Her liver is no longer enlarged, her heart is shrinking (was enlarged and is returning to normal) and the pulmonary edema (fluid in her lungs) is decreasing. Those are all positive signs that her body is having to struggle less which is great. Her gradient number however went down and its a bit puzzling. We were excited last time to hear that it had gone up to 150 but today it was only at 110. Remember the hose analogy that I mentioned last time - the smaller the hole/the higher the pressure/the bigger the noise/the bigger the gradient. They said today that while the gradient is down, all other signs in her body are still pointing toward self repair so they are content with her progress.
Also, she is still not showing any signs of muscular distress in her heart due to the improper flow or any valve damage which were the things that they were watching for that still might have required surgery. All this is good news. Its fairly certain now that surgery is off the cards.
She was reduced by one dose per day on her diuretic (Lasix) and we go back again in 6 weeks time to see about getting her off of it all together.
Ben and I both gave samples today of blood and saliva for the bio bank research. Over the coming years they are going to try and figure out why this happens to certain kids and try and figure out how to stop it from happening. They will be studying all kids/parents with cardiac issues that consent from Sick Kids, London Health Sciences, McMaster and Children's out in Ottawa and a few other major hospitals are due to come on board. It's a brand new study and we eagerly signed up to be Guinea pigs. They will take an extra vial of blood from Olivia the next time that she needs routine blood work for the study as they do not believe in poking the kids unnecessarily. Us adults are another story - they were quite eager with the needles ha ha.
She is growing nicely, 15 1/2 lbs or 7.15 kg now and is at or above the 50th percentile for all her measurements. She is also meeting all her developmental milestones nicely and is beginning to giggle on a regular basis which I am convinced is the best sound on earth.
Her liver is no longer enlarged, her heart is shrinking (was enlarged and is returning to normal) and the pulmonary edema (fluid in her lungs) is decreasing. Those are all positive signs that her body is having to struggle less which is great. Her gradient number however went down and its a bit puzzling. We were excited last time to hear that it had gone up to 150 but today it was only at 110. Remember the hose analogy that I mentioned last time - the smaller the hole/the higher the pressure/the bigger the noise/the bigger the gradient. They said today that while the gradient is down, all other signs in her body are still pointing toward self repair so they are content with her progress.
Also, she is still not showing any signs of muscular distress in her heart due to the improper flow or any valve damage which were the things that they were watching for that still might have required surgery. All this is good news. Its fairly certain now that surgery is off the cards.
She was reduced by one dose per day on her diuretic (Lasix) and we go back again in 6 weeks time to see about getting her off of it all together.
Ben and I both gave samples today of blood and saliva for the bio bank research. Over the coming years they are going to try and figure out why this happens to certain kids and try and figure out how to stop it from happening. They will be studying all kids/parents with cardiac issues that consent from Sick Kids, London Health Sciences, McMaster and Children's out in Ottawa and a few other major hospitals are due to come on board. It's a brand new study and we eagerly signed up to be Guinea pigs. They will take an extra vial of blood from Olivia the next time that she needs routine blood work for the study as they do not believe in poking the kids unnecessarily. Us adults are another story - they were quite eager with the needles ha ha.
She is growing nicely, 15 1/2 lbs or 7.15 kg now and is at or above the 50th percentile for all her measurements. She is also meeting all her developmental milestones nicely and is beginning to giggle on a regular basis which I am convinced is the best sound on earth.
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