Forward to Fontan

The SickKids cardiology team has decided to go straight to the Fontan surgery.  They reviewed her echos and heart catheter data and decided the only surgery that will solve Evynn's low saturation issue is the Fontan.  They feel that her valve is probably not leaking as bad as the reports say (reports are subjective) and that the blood pressure in her heart are as good as any pre-Fontan candidate.  A date for her surgery has not been set yet, we will find out soon.  It will be sometime in the next 2-3 months.

Sarah McLachlan....ANSWER....Live, HQ!

Still waiting...

Evynn was discussed on Monday to determine what they want to do surgically for her.  After the discussion, the team wanted to review more data regarding the tricuspid valve before making a decision... so we are still waiting to hear what the plan is...

Surgery soon...

 Evynn had a heart catheterization on Friday.  The cardiologists were looking to see if she had created venovenous collaterals (new arteries), which could have explained the increase in cyanotic spells (turning blue).  They did not find any but did find that there is narrowing of her aorta, which could explain a lack of energy.  She still has moderate leaking of her valve, and after exploring all other reasons for her increase in CHF symptoms, her cardiologist has concluded that it is time for surgery.  The team of cardiologists and surgeons will discuss Evynn on September 9th to decide if a mechanical valve replacement is still her best bet.  They will then set a date for surgery soon after that.  Evynn has been discharged to wait at home despite the fact that she continues to de-sat into the low 60s with minimal activity.  For the most part she is happy and tolerating her condition.  But no one is comfortable leaving her this way for long.

Back to SickKids....

Evynn was admitted to SickKids on Tuesday.  She was working hard to breath and sating in the low 60s.  She developed a fever of 40.0 and was extremely miserable.  All her blood and urine cultures came back negative, so we are unsure why she wasn't doing well.  Although over the past month her CHF symptoms have again been increasing.  She is still admitted, her personality has returned but she still has oxygen saturation a in the low 60s when she is playing or walking around.  Monday, her cardiologist will be investigating father.

Annual de-listing...

Evynn finally had her heart catheterization last week.  The results showed her ventricle pressures are better then expected.  The surgeons discussed possible options for Evynn considering her valve is still leaking and she still requires a fair amount of diuretics.  At this time they feel she should not remain on the heart transplant list because a valve repair or replacement maybe a possibility.  So she has officially been taken off the wait list again.  Her surgeon and cardiologist do not want to rush into anything, so for now we are back to having no set plan except "wait and see what she does".   Evynn continues to have low saturation levels fluctuating around 75%, random vomiting and cyanosis.
Despite all this... she is full of personality and joy.

Ups and downs

Evynn's CHF symptoms have continued to increase.  She had a sedated echo done a couple of weeks ago.  The echo showed no changes to her heart function and still a moderate leak of the tricuspid valve. So no real explanation as to why she is showing more symptoms.  On top of that, Evynn picked up one of those bugs that have been getting everyone.  For almost 2 weeks, she was having a hard time keeping any of her feeds down, lacked all energy and was miserable.  We struggled to keep her hydrated, resorting to feeds consisting of mostly coconut water.  She has turned a corner now and is feeling a bit better, although still showing her CHF symptoms.
Evynn was presented recently to the SickKids team of cardiologists and surgeons to re-discuss her plan.   For now they feel transplant is still her only option.  Considering she is one of the more "stable" children listed, she will continue to wait.  The transplant list continues to grow, two more cardiac friends were listed for heart transplants last week.  Evynn will be having a heart catheterization done with in a month to better understand what's going on inside her heart.  After that, the team will decide whether a valve replacement would be beneficial in helping Evynn through the long wait.