Bumpy road

Evynn has had a bumpy few days. Chest is still open with retractor. Still on ventilator. Still on ini-tropes and vasopressin, which had been weaned but needed it back after her blood pressure dropped. It has been a tricky push/pull trying to reduce the fluid in her tissue without drying her inside out so much that her pressure suffers. They say her main issue is being vasoplegic (weak/large veins). Yesterday morning she was in a better position and they were going to trying close her chest today but now they are thinking they won't be able to close for at least 5 more days.  She is completely off the muscle relaxer and has been complaining of pain. Her morphine has been increase and they have added other meds to help make her feel comfortable. She has been awake a lot and mouthing the words. Even mouthed 'I can't talk' when we were asking her where she felt pain. Hoping with the increase in comfort meds she will get the proper rest she needs. Over being a 'failing FONTAN' going in, they are happy with where she is now.  It's going to be a long slow road for her.

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!