One if the tubes in Levi's groin bleeds every time they sit him up.  Sometime last night it started bleeding and they had to put pressure on it for nearly 2 hours.  A surgeon just came in and put some sutures in to stop the bleeding.  They hope that will allow them to stand him up later today.

He gets to eat solid food today so he had a good breakfast.  He seems more awake than yesterday so I guess a lot of the meds are getting out of his system.

The doctors said again they want to keep him on the ecmo through the weekend because that puts him at a status 1 on the transplant list.  They are hoping for a heart before then.  When they remove the ecmo he will move down to status 2.  But, removing the ecmo allows more mobility so it's a trade off.  As is everything in this situation.

Levi and Jessica have an amazing support system that has been providing meals, comfort items, fun things, letters of encouragement, rides and companionship. 

Levi is still in critical condition but the surgeon said he has the best nurse in the CVICU.

So many positive things happened today. The breathing tube came out; two tubes came out; he sat up and ate (liquids).  He smiled, laughed and held our hands.

But Levi is still very sick. He's weak and in a lot of pain. His heart is doing very little.  He needs a new heart as soon as possible.

Thank you for your prayers!

These are the machines Levi is hooked up to.

The tube is out!

The tube is out! He can't talk for 2 hours so we're trying to use our rusty sign language.  Its so good to see his smile! He doesn't know everything that's happened but he knew today is Wednesday. The doctor talked to us about goals: clearing the lungs, gaining strength, etc.  Because he's had a previous transplant they have to be more picky with this heart. That and weaning him from the ecmo will probably cause a longer wait.

We saw his eyes!!

We just got to the hospital. Levi is still slightly sedated but he looked at us and held our hands. The nurse asked him several yes/no questions and he nodded his head to answer. He is still on the vent but only for support. He's breathing on his own.  Waiting for the doc to come by and decide about taking the breathing tube out.

November 19, 2019 (2)

The surgery inserting the impella went well and he has much better blood flow through his heart.  They have lowered the sedation levels and plan for him to wake up early tomorrow morning and have the breathing tube removed.  We can't wait!

The docs want Levi to be able to get up and walk and gain some strength before having the transplant. 

He is still on the ecmo for now but they hope to wean him from it quickly.  While on the ecmo he is a status 1 for a heart and when it is removed he will move down to a status 2. 

Thank you for your prayers!

November 19, 2019

A few weeks ago Levi had a stress test.  He did worse than the one before, which was to be expected.  The doctors told him they thought he could go 6 months to a year before needing the transplant.

Three weeks ago they did blood work to measure a hormone that affects heart pressures.  Normal is 0-30 and his was 1000.  They wanted him to come back in 2 weeks to have a heart cath and insert a balloon pump to assist his heart function.

That was yesterday.  The balloon pump did not support his heart enough and he went into cardiac arrest.  They resuscitated him, sedated him and put him on life support (ecmo). 

This morning he was slightly less sedated and responding to verbal commands but not fully awake.  He will have surgery soon to remove the balloon pump and insert an impella which will support his heart better and allow some mobility. 

Please pray for his healing and wisdom for the doctors.