We were set to go home Monday, but Sunday night Stephen began having some SVT (Supra-ventricular tachycardia). The first instance of it of it began Sunday morning when the nurses were messing with his TT line (the central line that leads directly into his heart). It had been giving them trouble when they tried to draw blood back for days, but when they would apply pressure to the area, or manipulate his arm, they were successful. That would lead you to think in some way they were able to "move" the line. They tried for 45 minutes with no success, but during this they noted his arrhythmia. It happened again later in the afternoon when they attempted for another 30 ish minutes to get blood (they were trying so hard so they could avoid poking him). Fast forward that afternoon and night it picked up a bit. The cardiologist was not too concerned (even agreed with us that it could be the TT line) and said he wouldn't lose sleep over it...a good pace of mind.
That brings us to Monday morning when all the sudden we were told they would begin giving him a new drug to bring his heart rate down (it was getting up to 140-190 at rest). The EP (electrophysiologist) had read through his charts and thought this was necessary based on the amount of arrhythmias he was having. So a little bummed, but no big deal. I take the kids to the Angel game that night, and sleep at the RMH with them.
Monday night/early Tuesday morning things went south. The medicine brought his heart rate too low, and made his sinus node sleepy, so he began skipping beats and eventually he skipped a beat for 3 seconds which is when the docs/nurses rushed in and hooked him back up the the external pace maker. So plans changed again Now the game plan was to give him the medicine to keep the heart rate low, and insert a pacemaker from keeping it from getting too low, or too sleepy. He was having two extremes and they needed to find middle ground.
All along we couldn't shake the thought that the TT line could be causing all of this. We knew it could be coincidental, but it all started when they messed with it. In talking with the EP he agreed that it could be the TT line but that SVT is also very common in Fontan patients and almost 50% of them develop it at some point. We were bummed, but also curious as too why then... why 13 days out did this randomly start. He agreed that the timing was odd, and a little far out, but said it could still happen.
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| The pace maker that would get placed if needed. |
So, Tuesday came and we met with the pace maker team, got all of the info, and discussed the options with both the cardiologist, EP, and surgeon. And again, we brought up the question of if it could be the TT line, and if it would make sense to go the less invasive route first. In the end, we said we would trust their expertise, but in my heart I knew I wanted to try the line first. At first his cardiologist sided with moving forward with pace maker, and then later changed his mind and agreed to try the TT line.
YOU GUYS....I don't want to get too excited....but the TT line was pulled at 8am and it looks like we were right!!!! It (most likely) was the culprit!!!!!!! There is obviously a chance things could change...boy do we know that!!! BUT right now the plan is to cut the medicine tonight and watch him a couple of days. If everything is stable, we go home with NO PACE MAKER!!!! This is a HUGE answer to prayer! And a great reminder to always be an advocate for your kiddo. I try hard to educate myself and listen carfully to what the doctors say. I ask A LOT of questions, but honestly...it pays off.
Cute story, after discussing some of this, the EP asked what I do for a living. Joe and I laughed and said I was a stay at home mom =) He was surprised...and a little impressed. I told him that I give them the credit. They do an excellent job explaining things and I appreciate them taking the time for my questions. It gives me a better understanding of my kiddo and his medical care, and that's really important to me.
So please join us in praying that his heart remains arrhythmia free! I want to say we see the light again at the end of this tunnel...but the nurses warned us not to use the "H" word. But for reals...we may be going "h word" soon!!!
Other good news...Stephen's new heart buddy got to go home today!!! He is a precious 4 year old boy who just had the same surgery this past Thursday and ROCKED recovery. He had a big bump in the road in the beginning, but then it was all smooth sailing! These two were precious together! Yesterday He taught Stephen all about Pokemon Go and they would then go on walks together searching for Pokemon...everyone LOVED it!!! On their walk today they were greeted by some MLB umpires (the ones umpiring the Angels/Padres series down here in San Diego right now). They are apart of a wonderful organization Umps Care Charities and they were passing out Build a Bears and outfits for the kiddos!
After a bummer of a day yesterday...today was like a breath of fresh air!!!
So all in all, day 16 in the hospital was pretty great. We colored, played video games, hunted for Pokemon, had some dance parties and met some cool umpires!
Prayer requests...
That we would ALL remain healthy and "rested" as much as possible.
That Stephen would remain arrhythmia free!!!
For there to be no more setbacks...for reals!
For God to be glorified through all of this.
I am tired. I am happy. I am mostly in a brain fog. I am grateful. I am thankful...and did I mention I am tired?! Boy will we all need some recovery time once we finally go home!
Thank you all for joining us on this journey!!!
May the Lord continue to shine upon our Heart Hero!
Praise the Lord! What a relief! Continued prayers!
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