Stable

Evynn had a quite night. They attempted to wean the vasopressin (vein & artery constriction med) more but with the intoduction of lasix (durectic) her blood pressure dropped a bit too much. The plan for today is to continue with the iV lasix and wean slowly the support meds. They will do a transesphogile echo (scope to picture heart) to get better images of her heart function because the regular echo is unable to get proper images due to her chest being open. She is moving in the right direction, she is just going to take her time recovering.

Baby steps

We haven't been allowed in her room most of the day because there was a procedure with another child. (Rooms turn into O.R.s if they need)
We just got to see her again. They have removed the pacer, weaned one of the meds and her urine out put has increased. Her blood pressure is remaining stable. All good news!

Rough Night

After having a stable day on what we were told was the maximum dose of the heart support medications, Evynn had a scary night.  Her blood pressure & heart rate were dropping and increasing the medication and pushing fluid was not helping.  Surgeons had to open her chest even wider to relieve any pressure on the heart and they put her on the external pacer to increase her heart rate which in turn increases her blood pressure.  She has now stabilized on twice the medication, wider chest and pacer.  She needs to remain stable all day before they will attempt to wean any thing.  If there is any decline, she will require ECMO, which at this point could greatly reduces her chance of success.

THE BEST BIRTHDAY GIFT EVER!!!!!!!!! (includes CCCU picture)

Evynn received the best birthday gift she could ever hope for!  Sunday night she was given a new heart, it first started beating just after midnight on her actual birthday.  We are so gratefully and truly understand the meaning this gift.

She is currently recovering in the CCCU.  Her chest is still open because of the inflammation.  She still requires a long list of medications (Epinephrine, vasopressin, isoproterenol, norepinephrine, milrinone) to stabilizer her.  She is on muscle relaxant and morphine.  She is on the ventilator.  The plan is to just let her rest.  The team did not expect her to recover quickly as her last surgery, the Fontan, makes adjusting to transplant more difficult.  For now she has avoided ECMO (portable bypass machine).  Although the picture looks like her eyes are open, she is not fully awake.  She does have moments of demonstrating that she is aware of touch and my voice.

HAPPY McHAPPY DAY Instead of Home... admitted, discharged & back

Since the discussion of heading home, Evynn's heart failure symptoms increased and she ended up needing to be admitted to SickKids on Thursday night.  The team increased her milronone (iV med).  She responded well and has been discharged back to the Ronald McDonald House Toronto just in time for McHappy Day.  The whole family was asked to represent families staying at the house during breakfast this morning at a local McDonald's with the B.T. crew.
Check out Ev's photo, go out and buy a coffee TODAY!

Home maybe.....

After 13 long weeks of being away from home,  the Transplant Team feel that we could "try" going home.  Evynn is still on the heart transplant wait list.  She is still on iv and oral medications to manage her heart failure.  She still has again decreased feed tolerance (more vomiting) because of too much edema (fluid) in her belly.  But despite all this the team feels that they can predict her better and that we should try be at home before she declines more.
Sunday, we had to visit Emerge because Evynn was vomiting everything, but after some bloodwork and medication adjustments, she was back to the Ronald McDonald House.  Monday, her picc line was also giving us trouble, resulting in another visit to SickKids for TPA.  She could be home as soon as next week as long as she doesn't pull anymore tricks.

Discharged!!! Moved to the Ronald McDonald House Toronto

After 6 rough weeks, with many ups and downs, Evynn finally has been able to leave SickKids.  She is not ready to be too far from the hospital, as she is back almost every day, so we have moved to the Ronald McDonald House Toronto.  Evynn loves being able to be with her siblings when they visit.  She is still in heart failure but her IV medication and diuretics are keeping her as stable as possible.  Now we wait the unpredictable wait and hope she remains stable...