Heart Broken….Literally

I have dreaded writing this blog, because I honestly can’t believe that we are here.  I had hoped and prayed that the Lord would “take my cup” from this additional battle, but it is not looking like that is going to happen at this time.  This past Thursday marked a whole month that we have been here at Lurie Children’s.  We had originally hoped that this was an acute heart issue from myocarditis, but that has been ruled out.  Now we are realizing that this is much more serious. Lukas will be considered a heart patient for the rest of his life now.

We still have no idea as to when we will be getting discharged to head home.  We have been inundated with constant visits from so many doctors and teams here at the hospital including: Oncology, Heart Failure, EP (electro physiology), Palliative Care, Infectious Disease, Rheumatology, Psychology and ICU (intensive care).  As you can imagine this has been super overwhelming, and the frustrating thing is that they still have no idea what caused this and what it is!

We do have a few updates.  One is that the CT scan showed that Lukas has interstitial lung process which hopefully will clear up, but we have to meet with pulmonary at some point to check up on his progress.  We also now know that Lukas is now being considered for a heart transplant.  It is hard for me to even type that, because of all that Lukas has already been through.  I was just thinking a few months ago how great it would be that come July, I would not have to administer so many medicines to Lukas anymore, due to the fact that his chemo was due to be done then.  But now I will be administering SO MUCH MORE MEDICINE and it will be for his whole life!  The other tricky part about all of this is that we are still treating his leukemia.  Apparently they don’t like to give a heart to someone who has not been cancer free for a while, because of the fear that the cancer will come back and infect the new heart.  This would be fine if his own heart can hold on that long, but you never know.

The process of being considered for a heart transplant is pretty intense.  They have to interview both parents to make sure that they are willing and able to do the support care that would be required post transplant, as it is extensive!  I don’t really know yet if a transplant will be the best option for Lukas, but it is definitely one of the options in the process of considering what will provide Lukas the best quality of life.  This is going to a long battle for him and for our whole family!  I have heard that some kids have to wait in the hospital for a year or longer for a heart. For others it is just a few months, but either way it will be a long time in the hospital beforehand (waiting) and a long time afterwards (post op care).  To be clear, this does not mean that it is definitely going to happen, but the process to see if he qualifies has begun.

I am sure that a lot of you are wondering how Lukas’ attitude and general outlook have been, being that he has been in the hospital for so long without any break at all, and given that he is sick.  I know that you all see those smiling pictures of Lukas, but this has not been easy for him.  He is upset a lot of the time.  He gets mad at the doctors and nurses.  He gets mad at Joel and me.  He feels as though we are not helping him to feel better and that we don’t know what we are doing. To an extent, that is true.  We don’t know what caused this or what exactly this is, but obviously for good reason he needs to obey and respect the doctors, nurses and of course his mommy and daddy.  This has been a real struggle, as hospital life is really difficult to create solid structure and discipline, but we are doing our best.  We also need to find a balance between comforting him when he feels terrible to pushing him to strengthen his body (as he has lost a lot of weight and his muscles have atrophied.)  We are also trying to find ways for Lukas to just be a playful four year old in the hospital.  This, as you can imagine, is very difficult, but Lurie is an incredible hospital in this regard!  They have activities planned, volunteers scheduled to come play with the kids a plethora of toys and games and of course the tv.

In regards to his actual health, Lukas has lost a significant amount of weight, has a lot less energy, and is in pain often, either due to all the medicines that he is on for his heart failure (a total of about 10!) or his recent surgery.

I am not going to lie and say that this road has been easy.  It has been the hardest month of my life, but the Lord has been so kind to us through it all!  I have been reading to Lukas from the book of John each night, and it has been great to review all the miracles that Jesus did.  We are hoping for those same miracles for Lukas!

So on occasion (at least four times including Lukas’ time) there has been a code blue on our floor, which is a medical emergency!  A nurse pushes the staff assist button and everyone from the floor who is able (doctors & nurses) come running to the room.  This is generally very serious and of course very scary.  On each occasion that it has happened I have turned to Lukas to pray with him for that kid and their family.  The last time we did that he clung to me tightly and it broke my heart.  I realized that he gets it.  A lot of kids on this floor who have conditions as difficult as Lukas’ end up with PTSD.  Lukas is four years old and I believe that he is battling that as well.  This will be something that we will have to  pray over and as he grows older he will have to hand over to the Lord.  That being said, he still has such a heart for those who are hurting.

I sleep in Lukas’ bed with him most nights, because he wants me to, and how could you turn him down?  Last night I must have slept funny because today I couldn’t walk!  I have a bad back as it is, but when I overdo it or sleep on it funny I have a lot of pain and am unable to walk and today was one of those days.  I was wobbling all over and complaining about the pain and Lukas blurts out a prayer asking for the Lord to heal me!   He is learning how to be a boy/man who prays for every need that arises and for that I am grateful!

“Rejoice always, pray without ceasing, give thanks in ALL circumstances; for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5:16-18

We are called to give thanks in ALL circumstances, so through all of this I have been trying to still thank the Lord.  I thank him for choosing me to be Lukas’ mom and for entrusting me to his care.  I thank him for bringing us to Cru right at the perfect moment so that Joel and I could be there for Lukas in a way that we couldn’t have in his previous role.  We thank God for bringing us back to our church home only a month before all this happened so that we would have the support of our amazing church family.  We thank God for waiting to have this happen after Josephine was a year old so that she could be sufficient without “mommy milk.”  We thank God that we live in a city with the 3rd best heart team in the country and one of the best heart failure/transplant teams in the world!  God knew what he was doing when he allowed this to happen and I know that I can trust him through it all.

Please continue to join us in prayer for Lukas and for all the other kids battling heart failure.  It is so hard to see all the kids on Lukas’ floor.  What these kids endure is sometimes too much for me to process.  Now that Lukas is a heart patient, it makes me realize how good we had it with just the diagnosis of leukemia.  It is such an easier battle to fight; the diagnosis was clear and the treatment regimen all mapped out. We never thought we would long for the days of “just fighting leukemia.” Now we are fighting both leukemia and heart failure.

You can also join us in this fight by sending little treasures for Lukas to look forward to.  He seriously LOVES getting packages in the mail here at the hospital!  It does NOT have to be expensive or big, but even a book (your favorite) or small figurines or little crafts (he likes the foam sticker pre packaged crafts) would really brighten his day! Please do not go crazy, as we are living in a SMALL hospital room and stuff builds up!  We will most likely donate whatever we are able to the hospital at the end of our stay, so don’t go crazy:)  If this is something that you would like to do, you can send it to:

Lurie Children’s Hospital

Attn: Lukas Settecase RM 2211

225 E Chicago Ave, Chicago, IL 60611

We also have a gofundme that was set up to offset all the additional costs of driving to and from the hospital, eating out all the time, hospital bills, medications, gas, the cost of babysitters and additional expenses that are involved with someone battling an illness like this.  If you feel led to help with this need we would be ever so grateful.  If you have already given or you are partners with our ministry, we are so incredibly grateful and hope to properly thank you very soon!  Here is the link: https://www.gofundme.com/f/help-lukas-beat-leukemia

Thank you, much love!

 

Playing Go Fish with an awesome volunteer!

Lukas LOVES it when Papa visits!

Captain America came to meet the famous SUPER LUKAS!!

Spider-Man did too!

The hospital does such a great job to provide some fun for the kids!

Super Lukas!!! Lukas said he had Hulk powers for this picture!

Auntie Rachie doing her thing, making Lukas laugh!!!

 

 

 

Sicker Than We Realized

It is natural for us to hope for the best.  It is natural for us to want to hear good news. It is also natural for us to assume that something bad, I mean really bad could not ever happen to us or to someone that we know and love.  This is what Joel and I have been experiencing for the last few weeks.  We have heard what the doctors have said “Lukas is very sick…….Lukas’ heart isn’t functioning well…..etc,” but we heard “Lukas WAS really sick but we are treating him and now he is getting him better.”

That is NOT what was actually happening, and we were awakened to that fact when we almost lost him Friday at 2PM.  Lukas’ heart stopped beating.  He had a cardiac arrest, and had it occurred at home he would have died.  They essentially brought him back to life through medical interventions, and for that I will forever be grateful!

Through it all I could see God’s handiwork.  The arrest happened moments after Joel had arrived at the hospital (which had been a last minute decision) so that Josephine could spend time with Lukas and me while Joel finalized his sermon prep (he was planning on preaching today at our church).  So, Joel was able to be with me and Lukas during the arrest.

His arrest also occurred during the normal 9-5 hours of M-F here in the hospital.  This ensured that he received the absolute BEST care immediately, whereas had it been after hours or on the weekend it would have been fewer people available and it would have taken longer.

The Lord also gave me the supernatural ability to be incredibly calm and collected through it all (Joel, unaware of what was happening, was down the hall when the arrest happened, working on his sermon while we tried to get a hold of him). This allowed me to calm Lukas and make him feel safe and secure, which allowed the doctors and nurses the ability and space to do their job super effectively.  I don’t boast in my own abilities, but just as it says in 1 Corinthians 1:31 “So that, as it is written, ‘Let the one who boast, boast in the Lord.'”  I share this to show that my peace and calm was only provided by the Lord.  The team even remarked about it afterward, which is a true testimony to our witness here in the hospital.

After his cardiac arrest his team felt strongly that they needed to act quickly to place a temporary pacemaker in his heart. This would stabilize him and support him if another heart block occurred again.

At that time they also placed an additional pick line, so that they would have some additional access points for more medicine if needed.  They also thought it would be best to leave him intubated over night, so that his body could heal from the procedure well enough, and so that his heart could stabilize well enough that when he was extubated it would be safe. The pacemaker is external, so they feared him pulling at it, which would be super unsafe and negate the purpose of the whole procedure being done.

Leaving Lukas intubated posed its own concerns to us due to the experience that we had recently had when he was left intubated overnight. However, we ultimately trusted that they knew what they were talking about, so we agreed.  Unfortunately they were never able to find the right drug cocktail (that’s what they call it when they use multiple medications to accomplish their purpose) that was effective enough to keep him comfortably sedated.  Even with all the sedatives, he kept waking up!

Eventually I expressed my concern to the doctor that the amount of sedatives that they would need in order to get Lukas into comfortable place would be unnecessary.  Joel and I both agreed that Lukas would handle the incision site fine, so the doctor decided that an early extubation would make the most sense as well.

So, at 2AM Lukas was extubated.  Here is the crazy part, even after Lukas received enough sedatives to put out most adults out, once extubated, Lukas stayed up for hours!  He was completely awake, talking and watching movies and eating ice chips. He was happy as can be!  What a fighter he is!!  He has always been a fighter and this, I believe, has contributed well for him in the past with his leukemia. I know that his fight will help him with his heart failure as well!!

So where does all of this leave us?  If you are like Joel and me, which you most likely are, you are probably thinking, “okay so he has a pacemaker, and he is a fighter, so now he is good, right?”  The answer is no.  We met with his team, and they laid out the honest truth about Lukas’ heart that we didn’t want to hear.  His heart is very sick!  It may never recover, and if it does it will take a very long time.  Not one doctor on the team feels comfortable sending us home without him having a permanent pacemaker.

So tomorrow Lukas will be undergoing heart surgery to place the pacemaker.  This is a permanent placement, as the only way to remove it would be exposing his heart again, which wouldn’t be worth the risk.  This will forever limit his ability to do certain (full-contact) sports. He will also have a four-inch scar where the incision was done on his chest. Otherwise, though, he will be able to function like any other kid.  What the pacemaker will do is protect him if he ever were to have another arrest (which he actually did immediately after his temporary pacemaker was placed. The pacemaker did its job for around 40 minutes before his heart took back over.)

Lukas having a permanent pacemaker will give us peace of mind that he will be covered when at home and away from the doctors, nurses and monitors.

We will be in the hospital for a minimum of another two more weeks, maybe even longer depending on how he responds to the medications.  We will have to continue ongoing heart failure care. There was even talk that if things don’t get better he may be a candidate for a heart transplant.

This is some huge stuff, especially considering the fact that he still needs to complete his leukemia treatment.  What is that going to look like?  Is his leukemia going to come back while we try to stabilize his heart and are holding off on his chemotherapy?  Our son is not even five years old and his heart is failing; that’s not supposed to be happening, but it is.  I wish I could give better news, news that we could flood the heavens with praise and thanksgiving, but we are not there yet.

All this being said, I know that although I need to prepare myself for the truth of what is in front of me, I need to remember that we serve a Father who loves us more than we can imagine.

I think of Ephesians 3:20, “Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us….” God is able to do more than we can ask or even imagine!  So, I am holding tight to the fact that God is with us.  God hears our prayers, and knows our hearts and he LOVES Lukas, so we are holding on to hope.

Psalm 55:22 says “Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.” We know that Jesus is sustaining us and he will never let us go.  Also, your continued involvement is the Lord’s will as well.  In Galatians 6:2 it says “Carry each other’s burdens, and in this way you will fulfill the law of Christ.”  Thank you for loving us through this season.  We could not have done this alone.

Once Lukas’ heart was under control all he wanted was his sister Josephine! Yes, those are defibrillator pads attached to Lukas’ chest!

Heading down for Lukas’ emergent pacemaker placement. He was still finding a way to smile through it all!

After some fighting, they allowed me to go into the OR with Lukas in order to be with him until he was fully sedated. This really helps him be calm when he goes to sleep.

This was my get up that I had to wear in the OR!

Tanta Susie brought Lukas this St. Paddy’s fedora, and he loves it!

Prayer Needs:

1. Pray for Lukas and our whole family as we try to navigate a way to create some normalcy amidst all this chaos.
2. Pray for Lukas to respond beautifully to the medicine so that we can head home sooner than expected.
3. Pray that his inflammation markers would go down and his heart function would dramatically improve.
4. Pray that the Lord would comfort Lukas and keep his attitude strong throughout all this.
5. Pray that a miracle be done and that the Lord would be glorified by our suffering.
6. Pray also for my extended family who also has to process this as well.  This is hard for us all!
7. Pray also for the surgery scheduled for tomorrow.  Pray that the Lord would be with the surgeon and anesthesiologist as the connect the pacemaker to Lukas’ heart.

 

Still not sure

I wish that I could shed some more light on what is happening with Lukas, but unfortunately the doctors are still not sure.  One thing that I feel that I am able to share is that they not do not believe that his heart has been infiltrated with leukemia!  Unfortunately the biopsies that they got the second time around was a lot of dead tissue.

What I am realizing is that we may not know for sure what caused Lukas to go into heart failure, ever!  Although no answers can be frustrating and hard, we are not promised all the answers.  Sometimes God doesn’t respond to us in the way that we were hoping and praying.  In fact, in James 4:14 it says: “Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanished away.”

It is because of this that we should not focus on the bad that we are going through, but to focus on the good.  We have so very much to be thankful for!  Although Lukas’ heart is still not super strong and is dependent on medicine right now, he has not had a fever for close to a week now!!!  Lukas is getting his appetite back and with that, his energy as well.  We have been so abundantly blessed by family, friends and even acquaintances who have been praying for Lukas and have been helping with meals, making his room cool for when we return and letters and gifts while in the hospital!

Lukas and I have been reading in the bible together from the book of Acts.

“He said to them, “It is not for you to know times or periods that the Father has set by His own authority. But you will receive power when the Holy Spirit has come upon you, and you will be My witnesses in Jerusalem, in all Judea and Samaria, and to the ends of the earth.” Acts 1:7-8

We are not to know everything in regards to the future, but what we do know is that we are to by on mission sharing the Gospel message with all of those we are in contact with and we are equipped with the Holy Spirit in order to do so.  It is through the Holy Spirit that God uses ordinary people like us to have an eternal impact on someones life!  Pretty cool, right?

As a mom to Lukas it has been so hard to watch him suffer and to think back through all he has been through in his short 4.5 years can be disabling, but I know that although I may never know on this side of heaven why we have been through all of this as a family, I do know that I, we, have been given a clear mission.  Our mission is the same as all of yours, to go and share the good news of Jesus with everyone!  You know what this clarity does?  It gives what we are going through great purpose and direction.  The doctors may not know what is going on, but I know that this is not a mistake, this is all part of His perfect plan to help us to know God and make him known.

Eating a BIG breakfast!! His appetite is back!

Paw Patrol Fire Truck from his buddy Domenic!

Basket full of goodies from Greenville College Friends! Face paint from Aunt Rachel!

Mommy snuggles are the best medicine!

 

The Good & the Bad

This has been a really good and a really bad weekend.  As I was laying in bed with Lukas last night who was sobbing because he wanted his brother and sister to come back, I became incredibly upset about how much this is tearing our family apart.  This has been really hard on all of us and we now know that this trip to the hospital is not close to being done.  We are going to have to find a way to stay close as a family in an environment that is so very difficult.

On Friday evening we learned some new information about the MRI results.  The doctors informed us that after further review by some additional specialized doctors they now do not believe that what Lukas has is myocarditis after all.  His heart is very damaged in a spot that makes them believe that it is actually a leukemic infiltrate of his heart.  Here is the crazy thing, Lukas’ oncologist, who is one of the most respected doctors in the nation, has not seen this EVER and the hospital hasn’t seen this in over 55 years and it happened to a patient with a totally different type of leukemia (AML) and the kid was WAY more sick than Lukas is.  All that to say that it has them all very confused and concerned with what is going on.  They want to take an additional biopsy of Lukas’ heart that is more focused on the damaged area.  This would let them know if it is in fact leukemia or just a very different showing myocarditis.  This procedure would be harder on Lukas, because it would be an incision right over his heart and being that currently his heart is still sick and is having very frequent irregularities it is dangerous to put him under.  So, now they have to figure out if the biopsy is important enough to risk the dangerous procedure.  This was all VERY hard to hear on Friday night as I was trying to leave the hospital for the first time in over a week to go spend some much needed time with Jakob (7), AnnaSophia (5) and Josephine (1) who all miss their mommy terribly.  Joel and I both felt much peace while hearing the news, but it is also very difficult to hear that the cancer that we have (well Lukas) been fighting off for 3.5 years could be back and in heart of all places.  If this is the case, which I personally do not think that it is, it would mean Lukas would need much more chemo, full body radiation and a bone marrow (or stem cell) biopsy.  This would probably mean months in the hospital.

Please pray to our mighty father, that the doctors would have great wisdom on how to move forward with treating Lukas.  Please also pray that Lukas’ heart beats would even out so that if they do in fact decide that they need the surgery done Lukas’ heart would be strong enough to handle it.  Please also pray this this is NOT leukemia!!!

So earlier I said that this was a great weekend.  It was great because I was able to spend wonderful time out of the hospital with Jakob, AnnaSophia & Josephine.  I also spent time with two of my sisters and two of my nephews!  This was really great, but it also gave me a taste of the outside world that made me crave it all the more. It made me so sad to come back to the hospital and know how badly Lukas wanted out, but is unable!

The other great part about this weekend is that I brought all of Lukas’ siblings to the hospital to spend time with him!  Lukas LOVED seeing them so much!  We played with legos together, we read stories, ate dinner and we finished out the night with a movie.  They stayed until 8PM and Lukas didn’t want them to leave.  He was sobbing uncontrollably they they had to go.  Lukas LOVES his brother and sisters and time with them is so good!  That being said, it is stressful to provide an easy environment for them to spend time together.  Please pray that Lukas’ attitude would change here in the hospital and that he would find a way to stay positive while feeling sick and in the hospital.  I have personally been praying daily that Lukas would decide to love his nurses and doctors, rather than hate them!  It would make our witness here in the hospital with his team all the more great, plus it would be better for Lukas’ moral as well.

On a totally side note, I have to say that we have been so incredibly blessed by all of our friends and family who have been praying, making meals, sending gift cards, financially donating to the gofundme and who have been helping make Lukas’ room and Phia and even our room better!  Thank you especially for Meg from MegMade for your leadership and amazing donations and time!  It has been so great to have something to focus on, other than the BIG stuff.

A HUGE Thank you to Taylor and the whole Boka Restaurant Group who have provided dinner for us the last few nights!  Yummy!!!

I am reminded daily of the verse Deuteronomy 31:6 “Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”  The Lord has never left our side, not even for a moment, which is so very comforting.

Happy with his chocolate sucker!

Dinner & a movie!

The girls going on a comfy walk

Phia & Josephine playing in the playroom on 12

Josephine was tuckered out!

On the right path!

He loves his new sword!

Lukas freaked out when he saw this gift!!

Lukas’ favorite visitor, his little sister Josephine!

We went on a walk down the hallway.

After a bite of yummy steak donated by GT Prime Restaurant!

Music therapy time!

He did it!!  He made it through the cardiac catherization and the MRI!  It was a rough wake up for him, as they left him intubated for many hours afterwards, because they wanted to make sure that there would be no need to have to go back into surgery again for any need.  After some additional tests, like an X-ray and a heart echo they decided that it was okay to take out his drainage tube first and then to extubate him.  This would have been fine if he wasn’t so resistant to the meds, but he was fighting to wake up beforehand and we were unable to right away, because they wanted to make sure that he could breathe well enough on his own and also that he wasn’t going to just past out once they intubated, so we had to wait another hour or so, which felt like an eternity!

When they did finally extubate him, it was really tough on him.  He was in a lot of pain and acting a little erratic.  He eventually did calm down though and towards the end of the night even had a hankering for some popcorn!

The next day was a day of catching up on lack of sleep.  I personally had only received a few uninterrupted hours in over 48 hours, so I was EXHAUSTED and although Lukas was put under, the quality of sleep I don’t think was great, because he was still super tired and his schedule was off, so we had a rest day on Tuesday.  It was later in the evening that Lukas started acting a little more himself.  We took him on a walk, read lots of stories, he watched his favorite Paw Patrol and we even FaceTimed with his brother and sister.  Unfortunately he wasn’t fully better.

He spiked another high fever and he continued to have irregular heart beats.  After his procedures Lukas had three peripheral lines in order to receive all his medications (above and beyond his central line) and one by one they all started failing him.  The first one was almost right after he was extubated, the second was while he was receiving a blood transfusion and started feeling pain at the sight and then they realized that the blood was spilling out of the line and into the tissue of his arm.  The third one was a hard one.  He had complained about it hurting, but when the nurse looked at it it looked fine, so they kept using it, even though I told them that they should stop using it.  They didn’t want to loose the last peripheral line if they didn’t need to though so they kept using it.  Unfortunately it did break and the medicine that he was receiving in that line was one that can be very harmful if it infiltrates the tissue!  So, they had to put 5 shot of medicine at the sight to try to counteract the damage done!  We are praying that it heals up and that no long term damage occurs.  What a hard balance it is to be a “mama bear” and also trust the doctors and nurses.

Although the road hasn’t been perfect, we have MUCH to be grateful for!  We now know that his leukemia is NOT back!!!!!!!  They did not find any leukemia in his bone marrow or in the fluids around his heart and his CBC (complete blood count) all looks great, so they are not at all concern that the leukemia is back!  That being said, we still don’t know 100% what this is or what caused it.  They are hoping to figure that out over the next few days and weeks, but they still believe that it is Viral Myocarditis.

So, what does all this mean?  This means that Lukas needs to stabilize and get better.  It also means that we might get to go home earlier than we had originally had thought, if he responds well to the medication regiment they have set up for him.  So far he hasn’t responded super great, as he had additional irregular heart beats and he is not eating anything.  In fact, he has lost 5 lbs in the last 3 weeks!  So, in order for us to get home and be together as a family, Lukas needs to gain weight, respond well to the meds (stabilize) his heart and he needs to be fever free for 24 hours.  The could take 3 or 4 days, but it could be much longer.  It just depends on Lukas.

I will say that there have been some amazing things to lift Lukas’ spirits while has has been here in the hospital fighting for his life!  The first one is that his Grandma and Omi & Papa and his Aunt Rachel have taken on watching Lukas’ siblings so that he could have mommy and daddy with him almost the entire time!  This has been a HUGE blessing, to thank you so much to my family who has really stepped up in that way!  The second way is that our friends Meg Piercy, Megan Kudzia, Jeanne Niu, Marissa Covert, Kim Samford, Katie Swanson, Jenny Wright and Lukas’ Aunt Julie have been working together to redecorate Lukas and Jakob’s room!  Lukas is SUPER excited to see his new super hero themed room!!  He has also be so incredibly blessed by all the videos, pictures and comments of people wearing their shirts backwards for him and praying for him!  Seriously what an immense comfort it has been to him and to us!  Another way that he has been encouraged is through cards and gifts that have come in the mail here at the hospital!  His face literally lights up at the sight of a package!!!  He also really loved music therapy today!

All this to say that we are not yet out of the woods, but we are walking on the path on our way out!  It is so wonderful to see Lukas’ million dollar smile again!  Thank you for your extreme help and prayers for my little guy, Joel and myself and the other three kids!   We are reminded daily how the Lord is near to us through all of you!

 

 

Not out of the woods yet

Thank you for all of your prayers!  Lukas is out of the procedure and he did GREAT!!!  The surgeon was hoping to accomplish four things while in there.

1. The first thing was draining the fluids from around his heart.  He was able to do this super fast and there was A LOT of fluids around his heart, 160 milliliters!  It was also at this time that they placed a pericardial drain that would allow him to continue draining those fluids so they do not build up any more.  They also sent some of the fluids out to be checked for leukemic cells and any other viruses or bacteria that may be the root cause of this.
2. The next step was to do a coronary angiogram, which is a special X-ray test to find out if the arteries are blocked or narrowed .  Thankfully this showed that his coronaries were totally fine and not at all blocked!
3. They also looked at different pressures throughout the heart.  They found that his pressures were actually WAY better than what they had originally expected them to be.  They found that his pressures are actually in the normal range for the amount of blood that the heart pumps in a minute (cardiac output) which is really good news!
4. They also biopsied three different part of the heart in the hopes of gaining insight on what is causing the heart failure.  Those were sent out today and they will be reviewing them over the next several days.

They still believe that this is myocarditis, but that will be confirmed or denied tomorrow during the MRI.  If is is myocarditis he could totally recover from this and this can be a terrible memory of the past, but he would be better!  You might be wondering how in the world he could have gotten this!  That is a great question and one that we are hoping to gain insight on after tomorrows MRI, but it seems that they think that this was something that started fairly recently (the last week or so.)  They think this because a virus like this wouldn’t be in the system that long.  They also know that even though he is measuring in the normal range in regard to his cardiac pressures that his heart is still quite sick, because they found that the pressure in his lungs was high.  This means that his body is working abnormally hard to make sure that his cardiac function is working properly.  For example, a healthy heart is like an olympic runner running 10 mph which is not much of a strain, on the other hand an unhealthy heart is like a normal person running at the same speed (achieving the same result) but with far greater strain and effort.

Another outcome of the MRI could be that this is not myocarditis at all, but in fact cardio myopathy which would have occurred from the chemo that he has received over the years.  They really don’t think it is this, but we will have a better idea after the MRI tomorrow.

Here is what we can expect to learn from the MRI tomorrow:

1. They should be able to tell when someone has myocarditis because they will be able to see the inflammation from an infection on the heart.
2. They will also be able to quantify the function of the heart during the MRI.
3. They MRI will also allow the doctors a chance to see things that the echo is unable to show.

All this being said if they find out that this is in fact myocarditis there is nothing that they would change for his treatment, they would just continue to support his heart while he fights off the infection.  So, we will need prayers that Lukas has gotten through the worst of the infection and that he will just continue to improve from this point forward.

Also, our URGENT prayer need is that he would make it through the night without waking from his medicated slumber.  Due to the fact that they decided to split up the two procedures (due to lack of availability) they wanted to leave him intubated until his procedure tomorrow.  This obviously is NOT ideal and when we first heard about this as the plan we though that they were CRAZY for even suggesting it.  But, they went on to explain that due to his heart being quite weak they didn’t want to have to put him through being intubated and put under two days in a row, because that is the hardest part on his heart.  So, they felt as though this was the best option.  There is also the fact that after receiving the cardiac catheterization he would need to lay flat on his back for 4-6 hours in order to allow his groan area to fully heal from the incision.

This all sounded well in good in theory, but we just experienced something I am praying we will NEVER see again!  Lukas just woke up two times due to the meds not being strong enough for him.  The reason that I believe the meds didn’t work for him is because Lukas has built up a resistance to the fentanyl (their drug of choice) because that is the same medicine that he has received every time that he has gotten a spinal tap and he has had around 30 taps in his lifetime.  What we saw was a little boy trying to scream, but unable and crying in fear and or pain and we as his parents could do NOTHING for it!  PLEASE I beg of you to pray that they are able to figure out the perfect combination to keep him in a safe state the rest of the night.  Please also pray that Joel and I are able to have peace through all of this AND that Lukas would have no memory of what just happened!

I know this may seem scary, and believe me it was, but I don’t want to oversight the fact that the news we received earlier was good!  Praise God for watching over our little guy and guiding the doctors hands through the procedure.

 

 

Hardest Night Yet

So, before I share what was the hardest night yet, which says a lot considering all that we have already been through as a family, I want to preface it by sharing how kind the Lord was through it all to us.

Yesterday morning I awoke to some pretty sad/scary nightmares.  It made me very concerned for Lukas and made me realize that as much as I want Jakob, Phia & Josephine to have their daddy during this tough time, I thought that Lukas needed his daddy and I needed Joel way more.  It got me to start setting things in motion for our kids to be well cared for with our family so that Joel could be here in the hospital.

This was a very good call, because having Joel here really put Lukas in a better mood.  He felt so much more safe having both mom & dad by his side.  We had a pretty good day together.  Before Joel arrived I took him on a walk down the hall in a WAY to small car wagon, which was nice for Lukas to get out of his bed and room for a change.  We also read the bible together, sang songs, laughed and watched a lot of paw patrol together!

Another way that the Lord was looking out for ALL of us, was that right before Joel arrived I put Lukas down for a nap which ended up being close to four hours!  Joel and I also took a nap as well, which was wonderful, because I really haven’t slept at all since we have been here.  This was so good, because of what was in store for us.

Because we took such a long nap, and all the procedures that Lukas had to have it was late by the time he went to sleep for the night, and once he did, Joel and I walked to the end of the hallway to spend a little time together and start making plans for what we are going to do with the kids moving forward.  We were quickly interrupted by Lukas’ nurse who came to tell us that Lukas’ heart rate became irregular and they would have to do an EKG to get a better picture of what was going on.  The EKG showed us that Lukas was having Ventricular tachycardia, which is a heart rhythm disorder caused by abnormal electrical signals in the lower chambers of the heart.  When this happens, your heart may not be able to pump enough blood to your body and lungs because the chambers are beating so fast or out of sync with each other that they don’t have time to properly fill.  This can cause cardiac arrest.  

Essentially the whole team was by Lukas’ bedside before we were even in the room and they were acting quickly to get his heart back to normal.  There are two ways to treat it.  One way is to administer a lidocaine infusion, which they initially tried, but it didn’t work. So, they administered him with amiodarone which helps with stabilizing unstable arrhythmia’s, but it can also cause further heart failure, so they had to have a crash cart and team standing by just in case.

They also had to give him an IV because they couldn’t give the amiodarone in his port with the other meds he needed, so that was pretty hard for Lukas.  Joel and I were trying to stay strong and calm amidst all the chaos surrounding Lukas so that he could feel safe, so we read a lot of books to him.  One of the books that I read to him when most of the team was in his room was “God is better than trucks” which is such a great book AND it shares the Gospel message, so all of the doctors and nurses standing by heard it and the also saw that even though we as parents were experiencing some pretty scary stuff we had peace.  God was so very present!

Thank the Lord Lukas responded well to the amiodarone medicine right away and his heart went back into a normal rhythm, but it caused the doctors to have concern for waiting an additional day for his procedure.  So, he is now receiving his cardiac cauterization today in the latest spot and because they are unable to get him in for the cardiac MRI until tomorrow they are going to leave him intubated and sedated until the MRI tomorrow morning.  This was NOT something that we wanted to do and we almost said NO!  We thought it would make a lot more sense to wait and do both procedures at the same time and they agree that that would be the best option, but because that was not an option that we had they HIGHLY recommended that we do the procedure today and the additional procedure tomorrow.  Joel and I turned to James 1:2 again (If you remember, this was our go to verse when Lukas was first diagnosed and it is again,) but this time we focused on 2-6, because we needed wisdom.   It says:

“Consider it pure joy, my brothers and sister, whenever you face trials of many kinds, because you know that they testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete not lacking anything.  If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.  But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.  That person should not expect to receive anything from the Lord.”

After we prayed and asked for His wisdom Joel and I both were in agreement that he needed the procedure done today.  We needed to move forward with getting answers on how we can be helping Lukas get better.  We then called a cardiac doctor who works at a hospital near by just to get some additional insight and he agreed that we had made the right call as did our team.

So, here we go.  Lukas will be undergoing heart procedure which is quite dangerous, so we need PRAYERS!!!  How can you be praying?

1. That the angiogram would give a better picture of his heart than what has been showing in the EKG’s.  Better in the sense of more information and that his heart is doing better.
2. That his heart function would improve after they drain the fluids from around his heart.
3. That his heart rhythm would remain steady and that his heart would remain stable during the procedure and during the time that he is under continued intubation.
4. That the doctors would come up with a good plan moving forward with what they learned from the procedure.
5. That Lukas would sleep comfortably for the duration of the time that he is intubated or at-least that he wouldn’t wake up afraid and upset.
6. That Lukas would be able to fully heal from this!

Update on Lukas’ moral.  The videos and pictures of people wearing their shirts backwards really did help!  A few of them even made him giggle.  Thank you so much for your partnership in cheering up our sweet little guy!  He is so amazing and I am so thankful for the Lord choosing me to be his mommy.

I also wanted to let you know of another way that we are being blessed.  I had reached out to a couple of my girl friends about a project that I had started to decorate their bedroom, but obviously couldn’t compete the job due to being here in the hospital.  So, they all stepped up and stepped in to designing and decorating a SUPER COOL SUPER HERO room for Lukas and Jakob while we are here in the hospital.  Hopefully it will done  before we head home!  We have a lot for him to look forward to, which is great!

Lukas getting some much needed rest.

Lukas and mommy

Lukas getting mommy!

Lukas with his lightsaber made by his amazing sister Phia!

This is how mommy & daddy were able to talk about scary things in front of Lukas with the doctors.

Wearing our shirts backwards for LUKAS!!!!!

 

Faith in Prayers

For Valentine’s Day the playroom here in the hospital had these super cute build your own heart shaped pillows.  We picked one up for Lukas and as I was tying the heart up and stuffing the pillow with the stuffing I was hit with the fact that I wish it were that easy to heal Lukas’ heart!  I wish there was something that I could do to fix him!  I was overwhelmed with this sense of sadness and as I was completing his pillow for him, he fell asleep.  Now I know that our heavenly Father is able to heal Lukas’ heart, and that I can help by praying for Lukas and having faith that he will heal him, but as a mom it is so hard to not be able to help more!

Just as a reminder to all of you, this blog is to keep all of you updated, but it is also like a journal for me and the kids to look back at later.  I am hopeful that this will be something that will encourage Lukas and the other kids later in how the Lord came through in some BIG ways!  That being said I want to share some details on what is going on right now.

Last night was a little tough for Lukas because he spiked yet another fever and was coughing quite a bit.  The coughing actually caused him to throw up, which was pretty upsetting to him, but nothing that reading some Berenstain Bears wasn’t able to cure!  He has had fevers for over three weeks now which has been really miserable for him.  I asked what they think that the fevers are from and they believe that it is due to the heart failure.  When your heart has to work overtime it causes fevers.  We also found out that his potassium levels were low due to the lasix he was taking to help him pee, so they gave him an infusion of that to get him back to normal.  We also found out that he currently has acidosis, which is when your body fluids contain too much acid. Acidosis occurs when your kidneys and lungs can’t keep your body’s pH in balance and this is happening because he is not breathing properly right now.  So, they had to assist him by giving him some bicarbs.  Medicine is amazing!  

His appetite is almost non existent right now, which is a combination of the continual fevers and the heart failure, so we are going to giving him something to assist with that.  Hopefully we can get his body a little stronger before his procedures which are scheduled on Tuesday.  The medicine seems to be helping, because his EKG showed slight improvement, which they were really pleased with!

The heart pillow that I made for Lukas.

Lukas receiving an EKG like a pro!

I learned that they may want to do a bone marrow aspiration in addition to the Cardiac Catheter and the MRI on Tuesday to make sure that the leukemia isn’t back.  His oncologist doesn’t believe that it is, but they just want to be very thorough.  We will know after the procedures if this is definitely myocarditis or not and if it is, which they think it is, the outcomes are not great, but they are hopeful that since he is as strong as he is he will have the best outcome.  The fact is that 1/3 of patients with it are totally fine, 1/3 need a heart transplant and 1/3 don’t make it.  Not great odds, but all we can do is PRAY PRAY and PRAY some more and have faith that our prayers will be answered, which is the hardest part!  

“Trust in the Lord with all your heart, and do not rely on your own understanding; in all your ways know him, and he will make your paths straight.  Don’t be wise in your own eyes; fear the Lord and turn away from evil.  This will be healing for your body and strengthening for your bones.” Proverbs 3:5-8

“Daughter,” he said to her, “your faith has saved you. Go in peace and be healed from your affliction.” Mark 5:34

“If you remain in me and my words remain in you, ask whatever you want and it will be done for you.” John 15:7

I am holding tight to John 15:7!  Jesus said this himself!  Ask whatever you want and it will be done for you!  That is powerful words!!  Now of course I have to remain in Him and His words, so I ask that all of you boldly ask that Lukas is healed and abide in the word and with Him yourself as you do so.  

Also, attitude is HUGE in health improvement and Lukas’ is not the best right now (rightly so) so I want to do something that I think will lift his spirits!  

I was hoping that we could all, in honor of Lukas, wear our shirts backwards for him this Monday, February 18th! He chose this because Lukas ALWAYS wears his clothes backwards, because it is super cool and he says that it is like the front of the shirt then becomes a cape!

If you want to join in on this, take a picture or video of yourself with your shirt on backwards and share it on facebook with me and Joel tagged also make sure to #prayforlukas as well so that we can easily track all of the activity!

Then throughout the day if people tell you that your shirt is on backwards or if they ask you why your shirt is backwards it will be an opportunity for you to share Lukas’ story and be reminded to pray!  So who’s in?!  

“Therefore encourage one another and build up one another, just also as you are doing.” 1 Thessalonians 5:11

Also, if you want to send cards, letters of encouragement, books or small gifts to Lukas’ bedside you can send them here:

Lurie Children’s Hospital

Attn: Lukas Settecase RM 2211

225 E. Chicago Ave.

Chicago, Illinois 60611

 

Thank you so much for your continued help with this!!

 

 

 

Breaking my heart

As I watch my four-year-old son struggle to breathe, I wonder why?  I ponder why we are going through this again.  Yesterday was a whirlwind of a day.  I brought Lukas in for an echo of his heart.  He was receiving this echo due to the doctors seeing a slight shadow around his heart the week prior during a chest x-ray that he received due to his diagnosed RSV (a respiratory virus).  The doctor assured me that it was most likely just because he didn’t breathe in during the chest x-ray, but also informed me that it would be wise to get one done anyway, because it is part of the normal protocol for leukemia patients due to the effects of the chemo he is on.  This was all reassuring, and as someone who does not worry often, I didn’t worry about the echo.  I assumed it was no big deal, and that he and his heart would be just fine.

That all quickly changed when during the echo, which was super miserable for Lukas, the technician said there was fluid around his heart.  I don’t know much about the heart, but I know that this is not good. I immediately started crying out to the Lord on my own and through some faithful prayer partners and family that the fluid would just be due to the RSV that he has been fighting and the fevers that he has had for the past two weeks.  Unfortunately that was not the case.

We went to the oncology floor to meet with his team to discuss what the plan would be for Lukas and while there; he spiked a fever and became tachycardic (his heart rate was beating way faster than normal and he was having a hard time breathing.)  This was really hard for me to see and even harder to process.  We had already been hit by lightning when Lukas was diagnosed with Acute Lymphoblastic Leukemia (ALL) at only 10 months!  So how could this be happening again?

After further tests and consults, we found out that Lukas is most likely suffering from viral myocarditis, which affects the heart muscle and the heart’s electrical system, reducing the heart’s ability to pump and causes rapid or abnormal heart rhythms (arrhythmias).  In addition to that, he has pericarditis, which is inflammation of the pericardium, which is what caused the fluids around the heart.  They both could have been caused by a viral infection, but it could also be from the chemo that he has received over the last several years.  So what exactly does this mean?  It could mean that after some medicines and treatments and lots of prayer that Lukas can recover fully, but it could also mean that he has heart failure and he could start getting worse and worse pretty quickly.

So, I want to address something that many of you may be thinking, as it has been something that Joel and I have wrestled with as well……..some of you may be thinking…… “What the heck, why is this happening to Lukas!?  Hasn’t he been through enough?  Isn’t three years of fighting leukemia, breaking his leg, having hip dysplasia and growing up in the hospital enough for one kid to endure?” From a worldly standpoint you would be right to think that what he has been through is enough, but as Christians we know that we are NOT promised an easy road.  In fact, we are assured that we will have suffering, which is why Jesus and the disciples taught us how to endure and persevere through trying times.   I am not saying that this hasn’t been hard.  This is the hardest thing Joel and I have been through thus far, which says a lot. There are a lot of questions, a lot of unknown factors, and yet, through it all we have peace.

We have peace for multiple reasons.  One reason is that we have the Holy Spirit residing within us,

“Cast all your anxiety on Him because He cares for you” 1 Peter 5:7.  

A second important reason is that we have a HUGE network of believers who are joining us in flooding the Lord with our intentional requests and the Bible says:

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.” Philippians 4:6

Another reason that I have peace is that I am residing in the comforting words of Scripture.  One of my favorite verses right now is:

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.” 2 Corinthians 1:3-5

So what does all this mean?  What is the plan for Lukas?  This is what we know right now.  Lukas’ heart is not pumping at the level that it should.  The normal Ejection Fraction (how much blood the left ventricle pumps out with each contraction) is  greater than 55% and Lukas’ level was 41%.  Thiscauses shortness of breath, fatigue and weakness, irregular heart beats abdominal discomfort and mental confusion.  He has experienced all of these side effects except for the confusion.  Another side effect is that he is retaining fluids due to the lack of heart function, so he is taking laxis, a medication that helps him pee, which will take the pressure off of his heart.  His blood levels dropped, so he received a bag of blood to assist with that and he is also receiving IVIG, which gives him antibodies that his body is not making on its own so that he is able to fight off the infection that he most likely has.  The plan is to let his body heal up on its own (with the help of the medicine) so as to make him strong enough to endure some procedures that he will have to get done on Tuesday.

Tuesday will be a big day.  Lukas will receive anesthesia (which can be dangerous in the state he is currently in) so that he can receive a Cardiac catheterization, which is a long tube (catheter) that is inserted into his groin, and threaded through your blood vessels to your heart.  They will take a small sample of the heart to gain some additional intel on what is going on and then drain the fluids around the heart.  They will follow that up with an MRI.  These two procedures will give the doctors way more insight as to what exactly we are dealing with, and thus the best way to move forward with treatment.

Prayer Requests & Needs:

1. Pray that the Lord gives the doctors and nurses wisdom on what labs to order and what tests are needed in order to find the answers.
2. Pray that the Lord would work a miracle and restore Lukas’ heart to normal quickly!
3. Pray that Lukas would not grow weary and discouraged and that I would be given super natural powers to aid in keeping him comfortable and happy throughout this.
4. Pray for Jakob, Phia and Josephine who will not have their mommy around like they are used to for an elongated period (we will likely be here for several weeks)
5. Pray that the Lord would use Joel and myself to share the good news of Jesus with hurting parents, nurses and doctors. Just as Paul was used even in prison.
6. Pray that the Lord would cover Joel and me with His amazing grace and His healing love.

Thank you for following Lukas’ journey!

1. 

   Lukas receiving oxygen when he first went tachycardic

   

   Lukas finally relaxing and resting in the ER after a lot of fighting!

   

   Lukas sleeping in the ER waiting for our bed on floor 22

   

   Lukas receiving a chest X-ray

   

   Lukas is always able to smile! Happy Valentines Day!

   

   Due to the fact that Lukas is in the ICU, the lights are always pretty bright, and Lukas likes it dark while sleeping, so mommy made a tent!

   

   This is how the tent was underneath. Lukas LOVED it!

   

   This picture is a HUGE victory and a BIG answer to prayer. Lukas has needed pretty consistent oxygen since we have been here, but he HATES putting on a mask or wearing these things, but after some hefty negations, Lukas finally did it!

   

   Going for a little walk down the hallway, which is a great sign that the medicine is already working or God is!

   

   Papa came to visit which really made Lukas happy!

   

   We FaceTimed with Jakob and Phia and it was so great to get the whole family talking (except Josephine)

Thank you for following Lukas’ journey!