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.

Back to CCCU

Evynn is back in the CCCU. She has a chest x-ray this morning which showed fluid building around both lungs. The right lung had the most and was causing it to collapse.  After having an ultrasound of her lungs, they decided to bring her back to the CCCU in case they need to insert a chest tube. Her surgeon is hoping that treating with aggressive diuretics will remove the fluid. They have also increased her oxygen back to 5L (she was down to only needing 1.5L).  She is comfortably sleeping now and we pray this is only a small bump.

Fluid Overload

Evynn is still really uncomfortable & miserable.  Her morphine has been increased to try to make her more comfortable. She is really fluid overloaded.  Which is making it harder for her to breath. They have ordered a chest x-ray to see if there is fluid building up around her right lung (because they couldn't get a chest tube in during surgery).  May have to have one put in if there is fluid.  These bumps were expected though.

Out of CCCU

Evynn was discharged from the CCCU to the cardiac ward this morning. She has been weened for of her heart meds, but is still needing oxygen and morphin.  Her surgeon is keeping a very close eye on her. She is still at risk of having set backs but has been recovering well so far.