It seems like it was justÂ yesterday I was killing myself trying to find a way to take Parker out of state to have his pull down surgery performed by someone who knew what they were doing.
Yes, the scars of frustration are still that fresh.
We got luckyÂ and found an amazing surgeon here who was not only willing to work with the doctor we had hoped to take Parker to at CCHMC, our surgeon even KNEW the guy.
It’s called Tender Mercies.Â And I believe.
Lately I’ve been thinking about taking Parker out of state (Denver or California) to see an actual specialist in the area of Pulmonary Hypertension.Â I have the blessing of both Parker’s Pedi and Pulmo.
Not just a cardiologist who has an interest in PH, but someone who has made it their life’s work.Â Someone with a proven track record of keeping kids with this awful disease alive.
The biggest road block staring me in the face is the same one I couldn’t move the last time:Â Our insurance doesn’t cross state lines.
Seeing a PH specialist wouldn’t be the same as having a take down surgery done in a different state.
First of all both Denver and California are within driving distance. My Mom and I would go and I would hire a nurse to accompany us.Â There would be hotel costs, food costs, fuel costs, and costs I’m sure I’m not even thinking of at the moment.
And while right heart caths are pricey, they are not as pricey as a surgery that connects a kids intestine to his tush. Parker’s hospital time would be significantly less.
We could go once, have the cath performed, meet with the specialist and then be followed from here in Utah, making trips back up if and when necessary.
What has my heart really leaning in this direction is that Parker’s liver panel has been spiking up the last three months.Â It’s most likely from his PH meds.Â But the only way to know for sure which med is the culprit is to slowly reduce one med at a time until better liver panel results are achieved.
The question that keeps floating around in my mind is what if we have to totally remove him from one of his PH meds?Â What does that mean for his disease prognosis?
Then you add in the catastrophe that was Parker’s last right heart cath, and well maybe you can understand where I’m coming from a bit better.
It’s not that I don’t really like our cardiologist.Â We do.Â We owe him so much.Â Twice he has gone to bat for our Brave Hero working magic and making a miracle or two.
But he’s not a specialist in the area of Pulmonary Hypertension.Â He attends the conferences and reads the write ups.Â I can’t help but think that a fresh pair of eyes might be able to offer up some fresh ideas.
This time taking Parker out of state to see a PH specialist seems do-able.Â And there have been things in the wings falling into place that support this feeling of mine.
Once again I have the opportunity to embrace my faith and see how it all plays out.
How about you?Â Have you taken a child out of state to see a specialist?Â How did it go?Â Were you glad you did it?Â Do you wish you had ever taken your child out of state to see a specialist?