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....

Frustrations

It has been a challenging week for Evynn.  She has had many blood tests trying to find the proper does of Coumidan (warfarin), which is needed because of the fenestration in her heart.  She was put on the minimal fat diet due to the chyle thorax.  Her chest tube has been clogged, leaking and causing pain.  Evynn has had numerous x-rays because of the chest tube being blocked and causing fluid to build up again around her lungs. Yesterday, there was much debate as to whether they should remove the tube because it wasn't draining but after the surgeons injected tpa it started draining this morning, and has drained over 120mls today.  Her saturation levels are still fluctuating.  Although it looked hopeful, she will not be discharged this weekend.

Special visitors

Wednesday, Evynn had a special visit from four of the Maple Leafs.  It was extra special because  two years ago, after her Glenn surgery, two of the same players held her for a photo.

Evynn has been improving slowly.  She was able to get away from needing oxygen regularly and I.V. meds.  Today she had a chest x-ray that showed the fluid around her lungs is mostly gone and what is there is draining.  She did although test positive for chyle thorax (a complication of the surgery, which allows fat from her diet to leak into her fluid and can cause her to drain continuously).  So far her drainage is fairly low, so they have decided to wait and see if she will require a minimal fat diet.  Hoping it won't be long before the rest of her chest tube can come out.

Ups & Downs

Evynn is in her own hospital room and improving. She had her pacing wires and one chest tube removed. The removal was terribly painful. She still requires morphine.  Her saturation levels keep going up & down and therefor requiring anywhere between 0.5L -3L of oxygen.

Chest tubes needed...

Yesterday morning after another x-ray, it was clear that the diuretics were not enough for remove the fluid build up.  Evynn had another chest to put in under her left arm.  The procedure went smoothly and the tube emidiately drained over 150mls of fluid. Within an hour Evynn's saturation levels were up in the 80s, her breathing was greatly improved and they were able to ween her oxygen down to 3L. By the evening she was feeling well enough to ask for toys and to go home.