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.