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....

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.

Evynn is in the CCCU awake & extubated.  She is miserable and on pain meds but clinically doing well.  Her cardiologists & surgeon are pleased so far....

In O.R.

Evynn went into the O.R. at 7:55am.  Dr. Van Arsdale feels it will be a longer than usual Fontan due to her complex anatomy. We will not hear updates until after 2pm most likely.  He called Evynn a 'boarder line candidate', due to the amount of diuretics she requires. He is not confident she will tolerate this way of blood flow, but feels it's the best option for her... If she does not tolerate he will have to 'take it down' back to the way it is now and try something else later.

Change of plans again...

Just got the call, the Fontan surgery is now set for this Thursday, October 31st....

Fontan rescheduled..

Evynn's Fontan surgery was cancelled for today due to her surgeon needing to be somewhere else.  She has been rescheduled for November 13th.  More waiting...

Fontan

Evynn's surgery, the Fontan, has been set for October 24th.  Now we need to keep her "healthy" until then... as we head into cold and flu season...

Forward to Fontan

The SickKids cardiology team has decided to go straight to the Fontan surgery.  They reviewed her echos and heart catheter data and decided the only surgery that will solve Evynn's low saturation issue is the Fontan.  They feel that her valve is probably not leaking as bad as the reports say (reports are subjective) and that the blood pressure in her heart are as good as any pre-Fontan candidate.  A date for her surgery has not been set yet, we will find out soon.  It will be sometime in the next 2-3 months.

Sarah McLachlan....ANSWER....Live, HQ!

Still waiting...

Evynn was discussed on Monday to determine what they want to do surgically for her.  After the discussion, the team wanted to review more data regarding the tricuspid valve before making a decision... so we are still waiting to hear what the plan is...

Surgery soon...

 Evynn had a heart catheterization on Friday.  The cardiologists were looking to see if she had created venovenous collaterals (new arteries), which could have explained the increase in cyanotic spells (turning blue).  They did not find any but did find that there is narrowing of her aorta, which could explain a lack of energy.  She still has moderate leaking of her valve, and after exploring all other reasons for her increase in CHF symptoms, her cardiologist has concluded that it is time for surgery.  The team of cardiologists and surgeons will discuss Evynn on September 9th to decide if a mechanical valve replacement is still her best bet.  They will then set a date for surgery soon after that.  Evynn has been discharged to wait at home despite the fact that she continues to de-sat into the low 60s with minimal activity.  For the most part she is happy and tolerating her condition.  But no one is comfortable leaving her this way for long.

Back to SickKids....

Evynn was admitted to SickKids on Tuesday.  She was working hard to breath and sating in the low 60s.  She developed a fever of 40.0 and was extremely miserable.  All her blood and urine cultures came back negative, so we are unsure why she wasn't doing well.  Although over the past month her CHF symptoms have again been increasing.  She is still admitted, her personality has returned but she still has oxygen saturation a in the low 60s when she is playing or walking around.  Monday, her cardiologist will be investigating father.

Annual de-listing...

Evynn finally had her heart catheterization last week.  The results showed her ventricle pressures are better then expected.  The surgeons discussed possible options for Evynn considering her valve is still leaking and she still requires a fair amount of diuretics.  At this time they feel she should not remain on the heart transplant list because a valve repair or replacement maybe a possibility.  So she has officially been taken off the wait list again.  Her surgeon and cardiologist do not want to rush into anything, so for now we are back to having no set plan except "wait and see what she does".   Evynn continues to have low saturation levels fluctuating around 75%, random vomiting and cyanosis.
Despite all this... she is full of personality and joy.

Ups and downs

Evynn's CHF symptoms have continued to increase.  She had a sedated echo done a couple of weeks ago.  The echo showed no changes to her heart function and still a moderate leak of the tricuspid valve. So no real explanation as to why she is showing more symptoms.  On top of that, Evynn picked up one of those bugs that have been getting everyone.  For almost 2 weeks, she was having a hard time keeping any of her feeds down, lacked all energy and was miserable.  We struggled to keep her hydrated, resorting to feeds consisting of mostly coconut water.  She has turned a corner now and is feeling a bit better, although still showing her CHF symptoms.
Evynn was presented recently to the SickKids team of cardiologists and surgeons to re-discuss her plan.   For now they feel transplant is still her only option.  Considering she is one of the more "stable" children listed, she will continue to wait.  The transplant list continues to grow, two more cardiac friends were listed for heart transplants last week.  Evynn will be having a heart catheterization done with in a month to better understand what's going on inside her heart.  After that, the team will decide whether a valve replacement would be beneficial in helping Evynn through the long wait.

Update on a long wait.

Since February is heart awareness month, an update on Evynn is in order.  Evynn is currently still waiting on the heart transplant list.  Being that she was doing well she has been waiting at home, Evynn has been passed by when hearts have come available.
Evynn had been doing amazing since we started homemade puree feeds through her g-tube.  She has gained weight, going from being in the 3rd percentile to the 15 percentile.  She was feeling strong enough to stand and dance without holding onto something and attempt taking steps on her own.  She managed to take 17 steps consecutively!  She has her first appointment with Grandview Children's Center this week for a speech consultation.
Lately, Evynn has been more tired and does not have the energy to practice walking.  She has been vomiting randomly, she stats have gone down to 75%-76%, more cyanotic, and more irritable.  She has an appointment this week at SickKids to see if we can figure out if we can find solutions.