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.