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!!!!!