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...

Adjusting to life in Hospital

Evynn has not been discharged yet.  After getting her picc, it seems that the original dose of milrinone is not doing the trick any more.  Over the past week, she has struggled to keep her feeds down.  Vomiting some days as much as 800 ml total.  Her stomach is just not digesting and she has been getting puffier (edema).  Her team decided to increase her diuretics and her milrinone.  They won't be talking about discharging her until she is stable on her medications and increases her feeding tolerances.

Her cardiology team has also decided they need to discuss the option of replacing her tricuspid valve again.  They fear the 2 year wait for a heart transplant may be too long of a wait...

In true Evynn style she is fully enjoying all the attention, and loving the play opportunities that Child Life and her nurses provide.

PICC in!

Evynn had her PICC (peripherally inserted central catheter) inserted this morning.  She was put under a general anesthesia. Every thing went well and she is now recovering. The plan is to discharge her tomorrow but we won't be able to go home until the CCAC nursing managers stop their strike. So instead we will go to the Ronald McDonald House, truly a home away from home as they say.

A Long Over Due Update

So much has happened since the last update.  After weeks of tests & discussions, we decided we preferred to list Evynn for a heart transplant again (3rd time in her life).  She was officially listed in October.  Since then she has had an increase in her heart failure symptoms.  Evynn has been struggling to tolerate her g-tube feed,  she has been vomiting far more often.  The thought is that she has so much fluid in her belly that she isn't digesting her food.  In effort to decrease that edema she was given another diuretic but this caused her become extremely dehydrated.  We ended up at SickKids emerge.  Evynn's heart rate was 54 and her blood pressure was extremely low and she had junctional escape heart rhythm.  The feeling in the room was that they were anticipating her to code at any moment.  They immediately gave her a dose of calcium which instantly raised her heart rate.  She was then admitted to the CCCU, her electrolytes were completely out of whack and her kidneys had quit working.  She received a blood transfusion along with other interventions.  They were able to get her kidney function back and all her electrolytes have almost recovered.  

Evynn has now been moved to the cardiac ward and is receiving a med iv continuous infusion called Milrinone.  Usually, once a child is on this medicine they are unable to be discharged from the hospital.  Occasionally, if a child responds well and stabilizes they can go home and have nursing visits to care for the PICC line (more long term iv, running close to the heart).  She will need to be on the Milrinone 24/7, while she continues to wait for a heart transplant.

On a positive note, her personality is returning...