Saturday 29 October 2011

Off Ventalator!

Evynn was extibated today!  She tolorated the chest closure and is now breathing on her own.  Her nurse thinks they will take out her chest tubes tomorrow.  Evynn's blood pressure is a bit high which they are controlling with meds and her heart is still not functioning well... also being controlled with meds.  The valve which caused all this drama is still leaking.  Her surgeon continues to mention heart transplant as a possible route... so we continue to play the wait & see game.  BUT it was wonderful to hold her today!

Thursday 27 October 2011

Closing her sternum again...

The surgeon is going to close Evynn's sternum today.  It will be a waiting game to see if she tolerates it.  Her heart is now in a sinus rhythm (good), but still on the pacer maker because when they attempted to remove it her heart rate was too low.  Her valve is still leaking and will need more surgery and for now her heart squeeze is not great.  Still on many iv drugs... More waiting...

Saturday 22 October 2011

Stable?

Evynn has managed to stay off of ecmo so far.  Her chest is still open, she has sixteen different drugs running... still on a tone of morphine and muscle relaxants.  She was being cooled to 34o, but they are going to slowly warm her up to 35o to see how she copes.  Her heart is being paced at 145 beats per min., they are hoping warming up does not increase the JET rhythm above the pacers.  They say she's having a good day... they call her stable...

Thursday 20 October 2011

Not a good day

Evynn's heart has gone into a JET (junctional ectopic tachycardia) rythm, with a high heart rate, and decreased heart function.  They are agressively trying to lower her heart rate so they can bully it into a good rythm with an external pace maker.  Evynn's heart rate goes up every time we talk to her or touch her.
Later today Evynn had her chest opened back up to give her heart more room to "do what it needs to" because she was not responding to the drugs. She may need to be put on an ECMO (extracorporeal membrane oxygenation.)

Wednesday 19 October 2011

Cardiac Critical Care

Evynn came out of surgery last night after 10pm.  Her surgeon was able to improve the function of her valve from severe to mild/moderate.  He expects it to be back to moderate within the month.  He was sucessful at lowering the pressure in her lungs and preformed the planned Glen stage (removing the shunt).  She is recovering in the CCCU and is being watch closely.  Her heart squeeze is not good but they are trying to give it a boost with Epi.  She has a list of drugs including morphine and musle relaxents.  She is still intebated.  When they lifted the relaxents she opened her eyes and was moving around but they don't want her to move too much yet.  A long term plan has not been established yet, the surgeon wants to see what her heart will do after recovery.  We've been told it's going to be a long road...

Tuesday 18 October 2011

Big Day

Evynn went into surgery at 3pm today.  The surgeon is unsure at this moment what he will accomplish, he is aiming to repair her valve and proceed to the Glen.  He is not expecting to come out of surgery until after 8pm tonight. We won't know much for the next 24 - 48hrs.

Friday 14 October 2011

Not the best results...

Evynn has recovered from the heart catheterization, but has been admitted to SickKids again.  The catheterization showed her leaky valve has gone from moderate to severe.  This is causing the pressures in her lungs to be too high.  The doctors and surgeon have decided to discuss her case this coming Monday when the surgeons and other specialist consult about up coming surgeries.  They are expecting she will now have surgery this coming week instead of the end of November.  The leaky valve has to be repaired to bring the pressure down, before she can have the Glen stage surgery.  They will debate whether they think they can do this all at once or whether it needs to be two separate surgeries.  The hope is that her surgeon will be able to repair the valve and proceed with the Glen all at once.  For now, Evynn is stable and still smiling...

Wednesday 12 October 2011

Heart Catheterization...

Evynn will be having her Heart Catheterization Test tomorrow at SickKidds.  They do this in preparation for the Glenn surgery.  The will check the structure of her heart, pressure in the chambers and oxygen level in the chambers and blood vessels.  It's done by putting a long thin tube into her heart through an artery or vein through the groin.  Like with any procedure it comes with risks... praying all goes well.

Thursday 6 October 2011

4 Months & finally 9lbs!

Although it's time consuming our new feeding system is packing on the pounds.  Evynn has finally reach 9lbs or 4.1kg, she still needs to get to 11lbs or 5kg before the next surgery but the way things are going, that shouldn't be a problem.