Please pray for Stellan and his family...I cannot imagine what they are going through. I pray that the Lord gives them strength as they go thorough this storm.
peace in the storm
It's a whirlwind here and I highly doubt I'll be able to post for some time after this. After an assessment of Stellan's continued SVT from yesterday and today, and an overview of all that has happened these past four weeks, Stellan's electrophysiologists here and in Boston are in wholehearted agreement that a change needs to take place.
My husband was here with us this morning for a few hours in the hospital and in the late morning the cardiologist here delivered the news. Stellan's SVT is intractable. He needs to go to Boston now for, at the very least, hands-on care by the doctors there, med adjustment and weaning, and, at the most, an ablation on Tuesday.
To be honest, I was shocked. You see, a couple of weeks ago, I was all over the whole second opinion thing. I wanted Stellan out of here and into the hands of doctors at a hospital that has dealt first-hand with extremely stubborn SVT in an infant.
When the Boston doctor was brought on board, he agreed that Stellan's case was highly unique but agreed that the risks of surgery on a baby this small were not worth it, if Stellan was getting reasonable control with drugs. The latest plan had been to revisit this idea in four weeks, keep Stellan on meds until then, to go home with a cardiac monitor, with a discharge date of today.
I knew that the way Stellan's heart acted yesterday would throw a wrench in things, but I in all sincerity still thought we would go home maybe tomorrow and accept this level of control and manage things from home. Granted, today, Stellan has been in SVT again, so maybe I was just not seeing the signs and being disillusioned. I think hearing the words "going home" had caused me to focus on that.
Stellan has continued to make it more than abundantly clear that going home is not an option.
Stellan will be going to the OR to get some permanent iv access this afternoon, and we will fly to Boston whenever the medical transport is available and Stellan is ready. The doctor told us that will either be later today or tomorrow morning.
My dad has already re-booked his flight to Boston and will be there with us for a few days. I have been told that I'll be able to stay in the hospital room with Stellan for the duration of his stay, but there are other housing options, too, including a house called the Devon Nicole house for families of heart patients (the Ronald McDonald house in Boston is only for cancer patients' families), and as you can imagine, I am trying to breathe deeply, stay focused on God being in control, and stay calm as I scurry around to make whatever arrangements I need to make before we leave.
I have an unexplainable peace, however.
Actually, if you really think about it, this peace is explainable:
Then they cried out to the LORD in their trouble,
and He brought them out of their distress.
He stilled the storm to a whisper;
the waves of the sea were hushed.
They were glad when it grew calm,
and He guided them to their desired haven.
Posted by MckMama