They found a heart!

It's a go!  Roughly around 9 tonight Levi will be getting a heart!  The docs haven't seen it yet so that's the only hurdle but it's a match!  We're thrilled and excited but prayerful as we move toward major surgery.  And it will be a tougher recovery so pray for him and his doctors!

Also, he will probably be out for a while and on support so pray for our family since we will be making decisions and being here.

Since Levi's impella continues to have suction, basically breaking up blood cells and damaging his kidney, the doctors are going other ways. They came to fix it and have decided that by Monday, at the latest, they will put in an ECMO, this time in the chest wall so he can walk. It's nicknamed a sport ECMO and would take him back up to a 1 on the list. This is what we want and hope for it sooner rather than later. Levi is a bit frustrated and wants to get it done so pray for peace and endurance for all of us as we wait for the doctors and for rest.

A few different updates today. Levi is walking more and more which is great! 

The Impella is not working properly and is going into suction. This just means it’s not creating good flow so the doctors are watching and may transfer Levi to a more mobile version of the ECMO. This would go through his chest wall so he can move around about as well as now and it may work better. They are still conferring but pray! 

Also, they are getting calls about hearts but his antibodies are an issue so we may have a longer wait. I feel the struggle in both of us. Pray for peace, a good holiday together, and endurance as we wait and he may have to go through yet another surgical procedure. God is good!

November 27th

So, it turns out Levi's antibodies are a little high which is making it harder to find a donor.  Levi is in great spirits, sleeping well and regaining strength.  

Pray for a heart still and that we will trust His power!

November 26th (posting a day late)

Levi is sleeping well, finally!  There is a minor issue with the impella machine when it moves position, etc.  They are working on a solution for that.  Pray for wisdom!

Levi walked around the ICR four times today!  Two in the morning and two in the afternoon. 

The doctors have put him on nitros oxide to help his right ventricle work properly.

Keep praying for more and more strength and that everything will keep going smoother and smoother.  Pray for a heart.

With the ECMO out, Levi was able to walk to the bathroom and sit up without any pain in his feet and feels so good!  We're so grateful for mobility and for him to have more energy! 

He also received two liters of blood and one of platelets.

He loved today and is so excited to be up and not waiting for a heart in bed!

This morning, one of his connections was faulty and came loose and he gushed some blood so the hospital is calling the manufacturer and making sure that doesn't happen again. He's fine and doesn't feel weird or anything. 

Apparently that's the only cord that could have done that without taking in air which is majorly bad so praise the Lord for that!

The ECMO comes out at 11 today so he will lay flat for a while after that then it will be done which will be good so he doesn't keep losing blood. He'll get some transfusions today and some platelets.

Over the past few days when the nurses would get Levi up to walk, he could only take a few steps.  This morning he walked 80 feet!

When PT came this morning he wasn't feeling well. They got him standing but he couldn't take any steps.

This afternoon, Levi felt much better.  He got up and into a chair. He ate lunch and stayed up for 2 hours.

Levi got a lot of fluid out yesterday and his lungs are better.  They had a blood doctor come yesterday and he has decided they cannot give Levi a blood thinner.  This may cause the blood going through the ecmo to clot. If that happens they will have to remove it.

PT is coming soon. They hope to get him sitting in a chair.  He says his feet are sore this morning and thinks it's from standing and walking yesterday. 

Standing/Walking

PT and OT did some exercises with Levi in the bed.  Then they stood him up and he took a few steps!

Sitting up eating real food!

The hospital served free Thanksgiving lunch to everyone at the hospital today. It was ham, turkey, green bean casserole, stuffing, mashed potatoes, bread roll, choice of pumpkin, pecan or apple pie and a drink. 

Also, the cafeteria was decorated and there were tablecloths on the tables.  All the cafeteria workers were wearing turkey aprons and hats.

It was a delicious and fun break for us.

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.