We went into Swedish yesterday (Thursday) to have Jaylie's MRI done.
We (along with the Dr's) were hoping the Dr's would be able to use a
light sedative to keep Jaylie sedated while the MRI was performed...
Well, Jaylie had other plans for us. They started the sedative and
started the MRI but partway through they had to stop because Jaylie
was not cooperating. Jaylie started moving around which is a no-no in
an MRI. Fortunately they were able to reschedule the MRI just an hour
or so later with heavy sedation and inbutation but, what this meant
was we had to stay another night in the hospital while they allowed
Jaylie to recover from the sedative and remove the breathing tube
inserted for the MRI.
Now, if you are counting we were in the hospital Monday, Tuesday,
Wednesday, Thursday and Friday of this week. I got no more than 3
hours of sleep at a time before I would have to get up and attend to
something, welcome to parenthood Nathan...
Rewind a couple of days from today to Wednesday, to add more favor to
our already boring lives, the neurologist came back into the room on
Wednesday and advised the ACTH drug was not going to be covered by
insurance and the the cost per vial would be $30,000 and that Jaylie
would need 4 vials total amounting to +$100,000 out of pocket. At that
moment in time I can say I started to feel a level of panic. We were
advised this treatment was the best possible treatment for our
daughter but now the desperately needed treatment seamed completely
out of reach, there was no way we could pay $100,000 for medication. I
asked the Dr to check again and see what could be done. She agreed and
went off and checked again. The neurologist came back and said the
insurance company would cover part of the cost but ultimately it would
end up costing us $3,000 per vial for a total of $12,000 out of
pocket, she then went on to advise there were other treatments we
could try that would be more cost effective if we had too. The
neurologist advised she would continue to look into the costs and get
back to me, in the mean time I went down to the in house pharmacy to
pick up the medications we needed right away to take Jaylie home.
While I was at the pharmacy picking up the medications and going
through the routine of having the pharmacists explain how to take the
medications properly the pharmacists explained he had this other
prescription he was working on filling, the order for the ACTH. The
pharmacist was excitedly concerned because as he explained it was
$30,000 a vial and he had to get like four levels of upper management
approval to even order the medication. The pharmacists advised even if
he were able to get the approval he would not be able to get the
medication until Monday. Jaylie and I left the hospital not knowing as
to whether we were going to be able to start the recommended treatment
for Infantile Spasms or not...
Fast-forward to now, in another display of Gods grace and favor, we
find out after all the right people talked to each other our insurance
would pay for the ACTH needed and that the vials would be sent to us
over night. We received the vials next day as promised. Is God awesome
With all that said and done, all the meds have been received and the
tests completed. We are on track to start the ACTH medication Saturday
morning. We have throughly sanitized the house thanks with my moms
help, thanks mom! We will start the ACTH medication at 5am Saturday
There are some serious side effects of ACTH, the most prevalent being
a compromised immune system.
Please keep us in your prayers!
We need safe passage through this time of Jaylie's immune system being
compromised and for the ACTH medication to permanently stop the
infantile spasms with little or preferably no negative impact to
As always, thank you all for your love, prayer and support!
YOU are priceless!
Nathan, Kristina and baby Jaylie