World Transplant Games

Take a look at the new link posted above.  Many of the staff in the video know Evynn...

Endless Testing...

As part of the work up to transplant, Evynn has had to undergo many tests & scans.  Yesterday, was the GFR (glomerular filtration rate) scan to measure her level of kidney function.

Her blood work included; type + screen, anti-HBS IgG, cmv IgG semiquantitative, cmv IgM, cmv PCR, EBV serology, Hepatitis B surface AG, Anti-HBc AB, Anti-HBe AB, Anti-HBs IgG, Anti-HCV IgG, CBC, IgA, IgG, IgM, HBeAg, HBsAg, HIV Ag/Ab combo screen, HSV IgG, HSV/CMV/EBV PCR, Isohemagglutinin Titre, LMWH (enox level) Toxoplasma gondii IgM, VZV IgG, VZV/HHV6/HHV7 PCR.  She has blood work done almost every other day and sometimes twice a day, which lead to needing a 70ml blood transfusion.  Her cardiologist attempted another try with captapril (heart function med), the first time it dropped her blood pressure to 40/p.  This time she tolerated the first dose, they will continue to up the dose for the next few days.  They are still thinking that once her meds sorted out she should be able to wait for a heart at home.

Listing....

Evynn's cardiologist has decided not to wait any longer.  They are moving forward with putting Evynn on the heart transplant list.  She is still waiting in hospital to sort out her medication, they haven't been able to find a heart med that doesn't drop her blood pressure too low.  The plan is to get her meds figured out and then wait at home... fingers crossed.  Waiting can be anywhere from weeks to months...

Ng is back.

Evynn had an Ng tube put back in yesterday.  She is so annoyed with it, but she needs to increase her intake.  They tried to increase her heart meds but her blood pressure won't tolerate it.  So much for going home today...

Home... And back again.

Evynn was discharged on Thursday, and was so happy to be home with her family.  But by Saturday morning her CHF symptoms had gotten worse.  She could barely keep her eyes open & was having a harder time breathing.  She was re-admitted Saturday night.  She has reduced her bottle feeding and may have to have the Ng tube back.  After adjusting some of the meds & doing blood work we should be allow home again.

Looking forward to heading home...

Evynn's improving each day.  Wires & tubes have all come out, including her Ng tube today.  She has proven she has enough energy to drink her whole bottle, a sign that she is responding well to the eight meds helping her.  The plan is to let us go home possibly Tudesday.  She still needs to wean off the morphine and have a detailed echo.  Transplant still looks like the most likely next step... but when will be up to Evynn's heart.

Out of the CCCU... for now...

Evynn moved out of the ICU and up to the cardiac ward today.  She is still being weaned off the morphine and will remain on meds to help her heart function.  Tomorrow we meet with the transplant team to discuss whether heart transplant would be a better path to take.  The surgeons and other specialist will review her case Monday morning.  Their hope is that Evynn can wait for the next step at home.