Saturday June 20, 2015

Please join us this Saturday to remember Evynn. 

3415 Greenwood Rd, Greenwood, ON L0H 1H0, 1-4pm

Children welcome

Please no formal black attire; white or light summer clothing 

(Evynn's favourite colour is deep purple)

Please no funeral flowers.

 A donation information table will be in place.

Parking available at Greenwood Community Centre: 3551 Greenwood Rd. Shuttle provided. 

If further directions or information required please contact Diana McIntosh at 905-621-6357

Remembrance of Evynn this Saturday

Hello Family & Friends,

We are so grateful for all your love and support.  We are planning a Remembrance of Evynn's Life this Saturday June 20, 1-4 pm at our home in Greenwood (north end of Pickering).  Details will be posted her on the blog soon, just wanted to let you all know now.  This will be an open invitation to everyone, as she has touched so many.

Thank you,
Carol

Sorry

Evynn is no longer fighting this fight...

BIG step in the right direction

These are the tubes that connected the ECMO to Evynn's heart.  We literally waved good bye as the beast left the room!  It saved her life last week... This week will be a different story.

ALTHOUGH we rejoice right now, we are STRONGLY warned that the next 12 hours are EXTREMELY critical.  We have been told that if she starts to crash she will not survive going back on ECMO (and this could be then end of her story).  Her heart remains stiff but is overcoming that for right now, and now being off ECMO she has the time her heart needs.  She remains chest open, and as we have seen that will be a major hurdle.  The inflammation of her heart needs to decrease and closing needs to not squish her IVC.  The stent is still in her IVC and her surgeon says she will not tolerate going to the O.R. any time soon, could be months.  Evynn is high risk for fatal infections, possible lungs issues and a whole host of other potential complications.

Today we give thanks to God and the amazing people he used.

Running out of time...

Evynn will be discussed again on Monday at surgical conference. Although she has made some small gains, we are running out of waiting time for her heart to soften enough to keep her blood pressure up.  Tomorrow her surgeon and others who have been caring for her will look for a plan to give her more time to soften that heart. Unfortunately, from our understanding now the risk of losing her personality and only keeping a body alive will increase with further intervention. We will be forced to weigh the risk.

Patience.

Yesterday, the suregons found two major sources of bleeding. One was an old vessel that needed a stitch, the other was in the IVC where the stent had eroded the wall of the vein. They had expected this could happen and that is why her surgeon didn't like the idea of the stent as a long term solution. They had expected it to last for weeks instead of 3 days though. They had fixed it (not sure how or how long it will hold). Since then, her bleeding has gone from over 100ml/hr to under 35ml/hr. She no longer requires blood product transfusions!  Her blood pressure has climbed to a point that they have had to reduce medication. She is now in a place where it is safer to try remove some of the edema (swelling).  They attempted to clamp off the ecmo and test her ability to maintain her blood pressure. She failed. Still because of the stiffening of the heart tissue. The message today was be patient...

Soften Thy Heart...

Yesterday the surgeons were able to locate a few sources of bleeding that they thought they could resolve.  For a few hours the bleeding had decreased by half, but because of the amount of anti-coagulant needed for ecmo she continues to bleed. She is back to needing over 100ml/hr of blood products. Her body only holds 1000ml so her blood is completely being replaced in less then a day or days in a row now. That alone is extremely hard on a body.

They were able to get a ectopic biopsy done without upsetting her heart. Results are not back 100%, so far seem as though there is no rejection.

The echo showed that her heart squeeze is back to where it was before the arrest which is good.  But the relaxation of the heart (how much it can fill up to then push out) is getting worse. They say her heart needs to 'soften' as it is still too stiff.  If they can get the bleeding under control, the stiff heart will be her biggest issue as the only thing that can help that is time and Evynn herself.

Last night we had the joy of seeing her off of muscle relaxers for an hour. She moved all her limbs, asked for water and nodded answers to questions. Amazing signs that her brain is still healthy!

Today they are investigating the bleeding again hoping to caughterize and resolve bleeding sources.  If they can't then she doesn't have a hope.  They are doing another echo and will clamp off the ecmo to see what her heart can to on it's own. They doubt they can take her off ecmo yet, but wish they could as that would also help the bleeding because of the anti-coagulants.

Praying for a softened heart...

Update... Found more bleeding sources and attempted fixes, so far (only been hour) really good. Heart still stiff.

Biopsy & Bleeding

Evynn remained 'stable'. Her underlying heart rate has gone from 50 yesterday morning to high 90s and is a sinus rhythm (normal). Even though for her that is an appropriate rate, right now it is not enough to keep her blood pressure up, so she remains on the pacer at 130. She has had excessive bleeding and is being infused about 100ml of blood or blood products and hour. At 10am, surgeons will investigating if the sutures for the ECMO are what's causing the bleeding.  They will also test her heart function and do a biopsy to eliminate the possibility of rejection. Doing the biopsy is high risk in her state but necessary. Later today they will also do another 'awake test', by stopping the muscle relaxer.

ECMO.....

Evynn did not have a successful heart catheter, although they did manage to place the stent in her IVC.  She arrested 4 times and had many more complications. The last arrest was over 20 mins but full chest compressions with good cardiac output. Her heart was not beating on it's own. She was put on ECMO extra corporeal membrane oxygenation, portable heart by-pass. The chances of her surviving because she is a 'failing Fontan, post transplant on ECMO' is very slim. No one is sure if she still is in that category or in her own as they have not had to put anyone on ECMO 14 days post transplant. When she was brought back to CCCU her heart was still not beating.  ECMO is keeping blood going the her organs and brain. Withan hour it her heart began beating but at an extremely low rate of 50.  Her heart is being paced at 130. She is being treated for fungal uti, which was the infection that cancelled her surgery and added in an unsecessful procedure.  She remains on many medications. She is being muscle relaxed. They allowed her to off the relaxer for a few hours and she moved her limbs and mouthed 'water'.  Small victory. For now the plan is to wait and rest her heart. It will be a few days before anyone can give us a better sense of survival. Her surgeon has promised if he feels we are in a prolonging death situation he will tell us. For now he says we need to wait. Wait...

Going for heart catheter today...

To help stabilize Evynn the team has decided to do a heart catheter to gather information and to put in a temporary stent while waiting to see if her blood cultures declare infections.

Just to make this more difficult...

This morning we were called at 3am as Evynn was struggling with her blood pressure. She had a low grade fever and her limbs were extremely cold.  The staff struggled to keep her blood pressure up by increasing her ini-trops(meds) and giving her blood volume with albumin. There are a few theories as to why all this has occurred. One is that she just needs the surgery, another is more clotting, or that she may be septic (infection).
She was scheduled to go to O.R. at 8am, but now her surgeon is concerned about the risk of her being septic.  They are currently debating other plans and possibly delaying surgery 10days to 6 weeks.

Back to O.R.

After surgical conference today, the team has decided it is best for Evynn to do surgery tomorrow. As of tonight she is booked for 8am. The plan is the re-route her inferior vana cava (IVC), using a conduit (gortex vein) behind her liver. She will need to be opened right to her pelvic bone so they can remove her liver to access the route planed. Please pray for all the risks she faces again...

Set backs....

Friday, Evynn was able to tolerate a CT scan. In order for Evynn to safely go the CT she had to have a cardiovascular surgeon go with her and hold her chest strings up until the very moment the scanner was on. She had to stay stable for 1minute unsuspended. It was quite a production.
The team was hoping that using a stent in a heart catheter procedure would correct the problem with her IVC. Unfortunately, Evynn's suregon feels the stent would not work as a long term solution. So instead tomorrow Evynn will be discussed at surgical conference and they will decide when she should go back to the O.R. for another open heart surgery. The debate is balancing minimizing the risk of infection by doing it sooner vs giving her body more time to recover from the massive trauma of having a transplant. The CT also showed more clots have formed in her jugular viens, which could explain the swings in blood pressure.
For now Evynn remains chest suspend, vented and fully sedated. Her journey is going to be much longer before she is safe and home.

Still suspended and having issues....

Evynn remains suspended. After another echo, there is concern about the spot where the IVC (vein) from new heart connects to old. It is tight and she needs a CT scan because she will most likely need a stent put in to widen it.  But they couldn't do CT today because she was too unstable to not be suspended. She has also been having massive blood pressure swings from hypotension of to hypertension of 181/110. They have tested her iV lines to see if they are the issue. Could have been medication delivery issue, but all line, pumps, syringes are good. No one really understands what is causing the fluctuations. It's going to be a long night.

Chest closed but suspended.... (picture warning)

Evynn was able to have her chest closed this morning.  She tolerated it well but later in the evening her blood pressure started dropping too much and they needed to "suspend" her chest.  They literally pull up on her chest by attaching thread to her ribs and that hang from above.  Since then her blood pressure has been stable.  They also found clots in her right groan from a femoral line.  Her pain management medication continues to be increased as she is becoming tolerant to the effect.  Evynn doesn't do recovery the easy way.

Retractor out.

Over the past few days Evynn has been weaned off most the blood pressure support meds. She continues on the durectic sand was able to get enough fluid off that yesterday they were able to get the retractor out of her chest. Now she is only partially open.  Her surgeon thinks they will try tomorrow for a full closure. If her blood pressure tolerates a full closure then she will be able to be extubated and we could hold her! They have increase her comfort management as yesterday she was quite aware of all the discomfort. Today she was finally able to sleep restfully. She continues to improve one day at a time.