The Labatt Family Heart Centre at SickKids

These people are Evynn's extended family.  They are the reason she is with us today.  Doctor VanArsdale is her surgeon.

Heart catheterization done.

Evynn had her heart catheterization today.  Her cardiac team as all concerned about what they might find and whether her heart would even tolerate the procedure.  They didn't find anything unusual.  The surgeon decided the only explanation was her large fenistration in her heart (intentional hole from the Fontan).  They tested closing it during the cath and found her pressures to be good.  The surgeon closed her fenistration which stopped the mixing of her red & blue blood.  She is back in her own room on the cardiac ward.  She is pink!  Evynn's oxygen saturation levels are 98%, her heart rate & respiratory rate have both come down.  We were warned that it could be weeks to months to know whether she tolerates this step this early.  We have to watch that the plural effusion (fluid around lung) doesn't come back and that her blood pressure doesn't drop too low.  Today, she is recovering well.

Home & Back

Evynn was home for a short stay.  She was discharged last Thursday because although not perfect, she seemed to be improving and could recover at home.  She spent the week at home on the couch or in someone's arms. Her energy progressively got lower and she continued to vomit in her sleep once a day. At her clinic visit on Wednesday, she saturation levels were all over the place depending on her position and which limb the prob was measuring.  Her left leg was also cool compared to the right and she complained of pain in that leg.  She did have pluses in both legs but the left was weaker.  Her cardiologist did not like any of her symptoms.  First thing Thursday morning Evynn had a sedated echo, followed by a chest x-Ray, ultrasound of leg and blood work.  Echo showed no changed in function of her heart, and no change in the leaky valve (mild/moderate).  X-Ray showed lungs look great with no fluid around them. Blood work was also good. Ultrasound showed there is an arterial clot with collateral arteries that have formed around it allowing some blood flow.  Evynn will be having a heart catheterization some time next week to look for more answers.

I am 1 in 100

Evynn got to go out to watch the Santa Claus parade with a few other kids from the cardiac ward.  

Evynn's chest tube is block & leaking again.  Her team has decided it's too compromised and needs to be removed but because her INR level (warfarin) is gain way too high, we have to wait a few days. We are hoping, but doubtful she won't need a new one. 

Chest tube saved by the CCCU nurses...

Last night, the cardiologist team decided to do more x-rays to see if Evynn truly needed a tube before re-inserting one.  The x-ray looked good so they were going to repeat one in the morning, but two of the CCCU nurses had come to the ward and thought they had a solution. After a very long day of waiting, evynn's tube was back in working order by midnight.  THANK YOU creative thinking nurses!

Another chest tube!!!

Just to add to the weeks events... The CVS (surgeon) on call came to switch the large Pleur-evac (large box for vacuum section for chest tube) to a small ball so that Evynn would have more mobility and less problems.  Unfortunately, the connections won't seal and her tube was cute in a way that it can not be fixed.  So it's back down to the CCCU  for a new chest tube again.  We just keep going backwards....