Today was Levi's fourth post-transplant heart cath/biopsy/echo checkup.  The doctor's are happy with how things are going.  

Levi has noticed some skipped heartbeats over the past few days but the doctors didn't see anything today so he'll just keep noting when they happen.  They adjusted his medications a little bit again today and reminded him that his immune system is very suppressed so he needs to be careful when around others.  He always wears a mask and carries hand sanitizer with him.  

The doctors also told us today that Levi's kidney is working very well.  In fact, they said it has never tested so well as it is now.

Biopsy results came back at Grade 0 - the best it can be.  Two pounds of extra fluid off.

1st Checkup Visit

Went to the hospital at stupid o'clock this morning for:

Heart cath & biopsy
Removal of staples & sutures
Echo of the heart
Chest x-ray
Medication adjustment

Levi gained 10 pounds of fluid in one week.  The docs said part of the cause is that the heart is not working at full function yet, but is improving.  A diuretic was prescribed to get rid of the fluid.  They don't like to do that because it is hard on his kidney.  

There is fluid in his lungs so not only does he need the diuretic but needs to continue breathing exercises to help the lungs re-inflate when the fluid drains.

When the nurse finished taking out all the staples in the picture below he was leaving and I said, "Levi, don't you have more staples?"  The nurse said, "Oh yeah, I forgot how sick you were."

Removing staples

Morning meds

Day 10 -- He's HOME!

The nurse told Levi this morning she was going to have him discharged by 1:00 today.  Of course, that made time drag.  Educators from dietary, pharmacy, rehab, social work, etc. all had to make an appearance.  Stitches needed to be taken out.  Paperwork had to be completed.

I was standing out in the hall while sutures were being removed and started listening to the heart failure team who were discussing Levi while they waited, too.  I overheard one say, "I'd like to wait."  Whoa!! 

Me:  "What do you mean "wait"?" 

Doctor:  "Until tomorrow."  He went on to explain to me why he wanted to wait. 

Me:  "I understand.  We want the best, too.  But he is ready to go home so you can tell him, not me."

Doctor:  "That's fine."  Goes into the room.

5 minutes later, he comes back out.

Doctor:  "I caved.  I couldn't say no to those sad eyes."

So, HE'S HOME!! 

He's very tired and hoping to get some good rest now.

Thank you, Everyone, for all the prayers!!  Please, continue to pray for healing and strength.

Day 9 (posting a day late, again)

Hey, Guys -- sorry I've been having trouble keeping up with these posts!

Day 9 (Monday):  All of the tubes and lines were removed and Levi really thought he should be let go.  He is extremely tired of the hospital and bored. 

A friend of theirs brought a friend of hers who is in a quilting guild.  There are about 50 women in this guild and they make quilts for foster kids, sick people, veterans, etc.  They call them prayer quilts because as they tie them, they pray for the person it is for.  They saved a few ties to do with us in the hospital -- it was such a sweet time.  Below is his picture with the quilt and the "label" that was sewn into it. 

Days 7 and 8

Day 7 (Saturday) was pretty quiet.  Levi walked laps around the unit twice, had breathing treatments, blood sugar tests, blood pressure tests, etc.  Other than that, he got some rest.

Day 8 (Sunday).  They pulled the "baby" chest tube out today.  They took an x-ray a few hours afterward to see what is happening around the right lung.  No results yet.  They are talking of sending him home tomorrow or Tuesday, depending on what the biopsy tomorrow shows.

Day 6 -- Out of ICU!

The heart pacer wires were removed today and Levi is moved out of ICU!!  He still has one "baby" chest tube to let out the remaining air from around his lungs and a PICC line in his arm.  He has lost 15 liters of fluid and looks like himself again.

Please pray that the recovery continues to be smooth, and for healing.

Day 5

Today was a busy day in Levi's room.  The final 2 chest tubes were removed.  His right lung had compressed some, possibly from those large chest tubes.  A much smaller one was inserted into his chest to get out the last of the air out.

The central line was taken out of his neck and a picc line inserted in his arm.  He can move out of ICU with the picc line but not the central line.

The dressing was removed from where they opened his chest.  It looks as good as something like that can look. 

He walked another 3 laps around the unit. 

There is talk of moving out of ICU in a day or two and possibly going home next week.  He told us this morning, "It seems they want me to go home, like I've overstayed my welcome!"

Day 4

Levi had some air around his lungs that the doctors said needed to come out.  Therapists came in, got him into the chair and had him do "chair acrobatics" to get it out.  Levi said, "I didn't know I could pass air through the holes in my belly.  Belly farts!"

He then walked 3 laps around the unit.

This afternoon Levi was having some intermittent arrhythmia.   It was determined that his magnesium levels were low.  After getting an infusion of that he then walked six laps around the unit.  Half a mile!!

Day 3

Levi spent most of the day sitting up in a chair and he is no longer on a liquid diet.  We watched a doctor remove three (of five) drainage tubes from his chest.  Yikes!  This afternoon he walked two laps around the unit.  He is absolutely amazing!!

Day 2

Levi spent most of the afternoon sitting up in a chair.  He now has a magic pain relief button that has helped a lot.  He also got a heart shaped pillow to hold against his chest when moving / coughing / etc.

He's in a good mood and talkative.  We have to put on gowns, gloves and masks to be in the room with him and can only stay for 15 minutes at a time.

Pray for pain relief

Levi is in quite a bit of pain, as would be expected.  They are controlling it the best they can with meds but please pray for relief.

December 1, 4:25 AM:  The heart is in! Another hour maybe hour and a half of closing things up and finishing up the surgery!  It went well! The heart physically fit well, and the swelling was low enough that they are going to close up his chest, unlike the plan!

1:30 PM:  Levi is still sedated but they are lowering the sedation, starting to wake him up.  The nurse said he is moving his hands and feet when asked to.  She thinks they'll take the breathing tube out in about an hour.

2:30 PM:  The doctor that did Levi's surgery just came by.  He said he's very happy how things went and that Levi is doing very well.  He also showed me a picture of the old heart.

3:10 PM:  He's awake and off the ventilator!  They let Jessica and I go in for about 5 minutes. The nurse said, "We never get them off the ventilator this fast."

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.

Monthly Donation Request

We would GREATLY appreciate your help in paying for Levi's upcoming heart transplant (we assume our portion will be approximately $150,000).  Rather than buying a product you don't really want that nets us only a few dollars we are asking you to consider making a monthly donation to Levi's Medical Fund (see below for donation options).  Please know that we appreciate every prayer, every uplifting word and every financial donation.


1.  Mail a check made out to Levi Shultz Medical Fund to:

Pinnacle Bank

c/o Tellers

PO Box 676

Keene, TX  76059

2.  Mail a check made out to Levi Shultz Medical Fund to:

Chris & Annette Shultz

1015 Elm Street

Eudora, KS  66025

(we will forward it to Pinnacle Bank)

3.  If you want your donations to be tax deductible you can make an online donation through Help Hope Live here.

Or, you can make checks payable to:  Help Hope Live

Note in memo:  In honor of Levi Shultz

Mail to:

Help Hope Live

2 Radnor Corporate Center

Suite 100

100 Matsonford Road

Radnor, PA 19087

Amazon Account Terminated

We are no longer an Amazon Associate.

We received notification from Amazon today that our Amazon Associate account was not in compliance with their requirements so it was terminated.  Thank you to all of you who used that as a way to contribute to Levi's medical expenses!

Kidney Transplant?

During one of Levi's hospital visits in the past few months the transplant surgeon mentioned doing a kidney transplant at the same time as the heart transplant.  Levi only has one kidney and we know that heart failure affects kidneys and that the transplant medications are hard on kidneys.  Still, we kinda just blew it off since no one has ever said his kidney was not functioning properly.

Well, this past Monday (August 5th) he went for a kidney transplant consultation.  They did a ton of tests (not quite as many as for the heart transplant consultation) and determined that his kidney is working at 44% of capacity.  It has to be down to 20% to be considered for a transplant.

So, it's good news that he doesn't need a kidney transplant but also concerning to know that it is not working as well as we had assumed.

We have more questions now than we did before .... and no answers yet.  But we know God is in control!

A Long Day at the Hospital

Levi had his heart transplant evaluation today.  He met with a social worker, a transplant coordinator, a dietitian and had more tests run.  The tests included blood work, an ultrasound of his carotid artery in his neck, a check of the pressure in his legs and a CT of his brain.  He has to go back for an abdominal ultrasound.

He is on the transplant list at a Status 4 -- Status 1 is the most urgent and Status 7 is the least.  We are assuming that means a transplant is not imminent at this time.

With the recent changes in his medication he is feeling pretty good.  Thank you, everyone, for your prayers!

Defibrillator

The condition of Levi's heart was causing the doctors to be concerned that he didn't have a defibrillator.  So, he had one implanted last week.  He was quite sore for a few days and has lift restrictions for four weeks. 

Stress Echo Test

Levi had a stress echo test this week which verified that his heart is under performing and does not show any signs of improvement. So, they are getting him on the transplant list. They'll be performing a heart cath within the next couple of weeks along with implanting a defibrillator as they don't feel it is safe for him to continue without a defibrillator for much longer.  They've tweaked his medications some more, too. The heart cath will most likely give us a clearer idea of what the time frame is for transplant and probably determine whether or not they want to keep Levi in ICU while waiting for a heart.

American Heart Association

I've been unable to find any information about the AHA helping individual heart patients.  Does anyone have any information?

Prayers needed for Levi!

In November, Levi began struggling to breathe because of fluid around his lungs.  His doctors determined that his heart was failing due to rejection.  They took action to reverse the rejection and he felt much better and was able to visit family for the holidays.

So far in 2019 Levi has had a few hospital stays due to heart failure symptoms.  These symptoms are due to restricted blood flow to and from his heart.  The doctors have put him on new meds and adjusted others.  His heart is somewhat stabilized but still considered to be in failure. 

At this point he is doing okay and trying to do things as normally as possible since he's not technically on the list for another transplant yet. We should know more within the next couple months.

Please join us in praying for healing for his heart, wisdom for the doctors, and financial support.