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.

Update on a long wait.

Since February is heart awareness month, an update on Evynn is in order.  Evynn is currently still waiting on the heart transplant list.  Being that she was doing well she has been waiting at home, Evynn has been passed by when hearts have come available.
Evynn had been doing amazing since we started homemade puree feeds through her g-tube.  She has gained weight, going from being in the 3rd percentile to the 15 percentile.  She was feeling strong enough to stand and dance without holding onto something and attempt taking steps on her own.  She managed to take 17 steps consecutively!  She has her first appointment with Grandview Children's Center this week for a speech consultation.
Lately, Evynn has been more tired and does not have the energy to practice walking.  She has been vomiting randomly, she stats have gone down to 75%-76%, more cyanotic, and more irritable.  She has an appointment this week at SickKids to see if we can figure out if we can find solutions.