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.

Homemade...

 Evynn is now 17 months old and has enjoyed the last couple of months at home.  She thinks she is so funny climbing the stairs when she knows she shouldn't.  She had another sedated echo which showed no change, her valve is still leaking and still needs a heart transplant, but she is stable and growing.  Evynn is still to weak to learn how to stand or walk but that doesn't stop her from getting around.  She finally had her g-tube size changed, which means we are now experimenting with homemade purees.  This has been a lot of trial and error.  It has required careful analysis of all the nutrition in common foods to maintain her high calorie diet.  She has been tolerating a higher volume of food in each feed, which has allowed her to be free from the tube & pump for more of her day.  Her SickKids team is happy with her stability right now (things can in an instant).
We ask again for thoughts and prayers for another little friend waiting at SickKids for a heart as well... she is not doing as well...

Admitted again..

Evynn was admitted to SickKids Sunday after not being able to tolerate any of her feeds.  They now have reduce the concentration of her formula & put her on continuous feeds. She gets 30mls per hour.  The vomiting has subsided but she still has moments of complaining about her tummy. Tomorrow she they will do a gastro emptying study to see how well her tummy is working.  We are also waiting to have a sedated echo.

Waiting Again...

Evynn was discharged from SickKids on Thursday last week.  Her random discomfort seems to be under control with the increase of her reflux medication.  She continues to vomit and retch daily.  There does not seem to be a pattern to what will make her vomit, some times even offering her food will make her retch.  After searching for every reason for the vomiting and changing her formula to a more 'broken down' kind, the consensus is that she is just showing more CHF symptoms.
The transplant team, cardiologists and the surgeons discussed Evynn on Monday and decided to re-list Evynn for a heart transplant.  She is considered a moderate - to high risk transplant because of her condition, past surgeries and sensitivity to other tissue types.  So we wait....