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...

Here we go again...

Since February Evynn has had excessive edema around her neck, she had a neck ultrasound, echo, heart catheter, diaphragm ultrasound, and blood work to explain... months later her team has decided that her heart failure (edema is the symptom, along with other increasing symptoms) is due to that leaky tricuspid valve.  The team is unclear about what to due.  Options are to surgically replace the valve with a mechanical valve that will need replacing as she grows or to re-list Evynn for a heart transplant.  Both directions are riddled with complications.  Evynn's cardiologists has decided to admitted her tomorrow to the cardiac ward at SickKids to test whether I.V. diuretics will make a difference.  Her cardiologists also wants to gather more information to help inform the decision as to which path to take.

HEARTS 4 HEARTS... A BIG THANK YOU!!!!!!

Thank you so much to all of you who came out and supported our goal of raising money for Ipads for the Cardiac Unit!  So far we have raised $1890!  We have almost raised enough to buy 4 Ipads for the Unit.
It was FABULOUS night and we are so grateful to IL FORNELLO's Ajax for facilitating the event.

For anyone still wishing to contribute, the on-line donation page is still open.  Just klick on the following link; Community Involvement PET pages

HEARTS 4 HEARTS Fundraising link

Community Involvement PET pages

Here is a link for all of you who can not make it for dinner.  Just click on the Community Involvent PET pages title above.  Thanks for your help!

HEARTS 4 HEARTS

We are so grateful to SickKids for the past three years.  We would like to celebrate Evynn turning 3 by giving back.  

Hearts 4 Hearts

FUNDRAISING FOR CHILDREN AT SICKKIDS HOSPITAL

Thank you SickKids Evynn turned 3!

Wednesday, June 25^th 2014

5pm – 8pm

IL FORNELLO

95 Kingston Rd E

Ajax, ON L1S 7J4

With donation, a special dinner menu will be offered for this event.  Choice of first course & second course & soft drink for $15 incl. tax, 1 child per adult eats free.  BYOB Wine only with no dispensing fee.

Reservations required at ajax@ilfornello.com or 905 427 1110

DONATIONS WILL GO TOWARDS PUCHASING IPADS FOR IN-PATIENT USE AT SICKKIDS HOSPITAL