Saturday June 20, 2015

Please join us this Saturday to remember Evynn. 

3415 Greenwood Rd, Greenwood, ON L0H 1H0, 1-4pm

Children welcome

Please no formal black attire; white or light summer clothing 

(Evynn's favourite colour is deep purple)

Please no funeral flowers.

 A donation information table will be in place.

Parking available at Greenwood Community Centre: 3551 Greenwood Rd. Shuttle provided. 

If further directions or information required please contact Diana McIntosh at 905-621-6357

Remembrance of Evynn this Saturday

Hello Family & Friends,

We are so grateful for all your love and support.  We are planning a Remembrance of Evynn's Life this Saturday June 20, 1-4 pm at our home in Greenwood (north end of Pickering).  Details will be posted her on the blog soon, just wanted to let you all know now.  This will be an open invitation to everyone, as she has touched so many.

Thank you,
Carol

Sorry

Evynn is no longer fighting this fight...

BIG step in the right direction

These are the tubes that connected the ECMO to Evynn's heart.  We literally waved good bye as the beast left the room!  It saved her life last week... This week will be a different story.

ALTHOUGH we rejoice right now, we are STRONGLY warned that the next 12 hours are EXTREMELY critical.  We have been told that if she starts to crash she will not survive going back on ECMO (and this could be then end of her story).  Her heart remains stiff but is overcoming that for right now, and now being off ECMO she has the time her heart needs.  She remains chest open, and as we have seen that will be a major hurdle.  The inflammation of her heart needs to decrease and closing needs to not squish her IVC.  The stent is still in her IVC and her surgeon says she will not tolerate going to the O.R. any time soon, could be months.  Evynn is high risk for fatal infections, possible lungs issues and a whole host of other potential complications.

Today we give thanks to God and the amazing people he used.

Running out of time...

Evynn will be discussed again on Monday at surgical conference. Although she has made some small gains, we are running out of waiting time for her heart to soften enough to keep her blood pressure up.  Tomorrow her surgeon and others who have been caring for her will look for a plan to give her more time to soften that heart. Unfortunately, from our understanding now the risk of losing her personality and only keeping a body alive will increase with further intervention. We will be forced to weigh the risk.

Patience.

Yesterday, the suregons found two major sources of bleeding. One was an old vessel that needed a stitch, the other was in the IVC where the stent had eroded the wall of the vein. They had expected this could happen and that is why her surgeon didn't like the idea of the stent as a long term solution. They had expected it to last for weeks instead of 3 days though. They had fixed it (not sure how or how long it will hold). Since then, her bleeding has gone from over 100ml/hr to under 35ml/hr. She no longer requires blood product transfusions!  Her blood pressure has climbed to a point that they have had to reduce medication. She is now in a place where it is safer to try remove some of the edema (swelling).  They attempted to clamp off the ecmo and test her ability to maintain her blood pressure. She failed. Still because of the stiffening of the heart tissue. The message today was be patient...

Soften Thy Heart...

Yesterday the surgeons were able to locate a few sources of bleeding that they thought they could resolve.  For a few hours the bleeding had decreased by half, but because of the amount of anti-coagulant needed for ecmo she continues to bleed. She is back to needing over 100ml/hr of blood products. Her body only holds 1000ml so her blood is completely being replaced in less then a day or days in a row now. That alone is extremely hard on a body.

They were able to get a ectopic biopsy done without upsetting her heart. Results are not back 100%, so far seem as though there is no rejection.

The echo showed that her heart squeeze is back to where it was before the arrest which is good.  But the relaxation of the heart (how much it can fill up to then push out) is getting worse. They say her heart needs to 'soften' as it is still too stiff.  If they can get the bleeding under control, the stiff heart will be her biggest issue as the only thing that can help that is time and Evynn herself.

Last night we had the joy of seeing her off of muscle relaxers for an hour. She moved all her limbs, asked for water and nodded answers to questions. Amazing signs that her brain is still healthy!

Today they are investigating the bleeding again hoping to caughterize and resolve bleeding sources.  If they can't then she doesn't have a hope.  They are doing another echo and will clamp off the ecmo to see what her heart can to on it's own. They doubt they can take her off ecmo yet, but wish they could as that would also help the bleeding because of the anti-coagulants.

Praying for a softened heart...

Update... Found more bleeding sources and attempted fixes, so far (only been hour) really good. Heart still stiff.