In Preparation for the Fontan

This last few months our minds have been turned toward my oldest son’s next surgery.  I’m not all that nervous.  Honestly I’m sure he will be okay. But I’ve been battling a lot of flashbacks to our very stressful 7 months in hotels while dealing with his first two surgeries.

A few months ago our doctor informed us that our hospital had merged with a bigger hospital two and a half hours away.  He mentioned that if everything  works out well then the surgery will go on as planned.  If not, we might have to move the surgery to the other hospital, two and a half hours away.  I left the office feeling optimistic, sure we would be able to be at home for this surgery with the help and support of all our friends in the area.  I allowed myself to briefly think about having to go to the other hospital but brushed it off as unnecessary when the train of thought reached living in The Ronald McDonald House.

The nurse called me to schedule the cath procedure that we will need performed before his surgery and that let reality set in a bit that this is going to happen.  When we went in for a follow up for my baby to make sure he has no heart defect and I chatted with the doctor again.  “If we delay the surgery a few months, would that increase the liklihood of having it here?” Um…no.  It turns out that the surgery team that used to work out of our hospital here is now stationed at the other hosptial and there probably would not be another team to perform these surgeries here for another year.  A Year?!?  So we will definately have to travel 2.5 hours for his surgery.

Now, don’t get me wrong.  There are definite benefits to the other hospital. It is a real Children’s Hospital with all the amenities that the Children’s Hospitals provide to families and the patients.  Thats a good thing!

But then my mind heads on over to The Ronald McDonald House again.

Now, the thing is… The Ronald McDonald House is AMAZING! And it provides something (many things!) for families who are in a rough time of their lives.  But my experiences there (two separate stays at a house in a different state, so not the one I’ll be going to again) were traumatic.  Having lived in hotels already it wasn’t a place I went and felt filled with magic.  I didn’t feel relieved that my children could play on the indoor playground because I still had to be with them 24/7.  THERE WAS NO BREAK! During our first stay, a series of illnesses and mis-communications led the director of the house to chastise us (I felt it was very unfair and one sided) and follow us around the entirety of our second stay and even going as far as threatening us.

So the idea of going back to a spot where I felt confined and stressed out and overwhelmed…the idea of going to somewhere where I can’t just be me but I have to clean, clean, clean… the idea of going somewhere where I can’t comfortably bring my entire family with me for fear of being too noisy or knowing that I can’t leave their sight for even one second with out getting in trouble- I’m having some serious issues.

Eh. I’m sure that everything will work out even better this time that last time.  I’m sure that the staff will be super friendly and the issues I dealt with before were all flukes. The added benefit is that I know I’m not completely homeless at the same time as going through all of this and I can go home-albeit with a very long drive.

Never did I realize that preparing for the Fontan surgery for my two and a half year old son would include me dealing with flashbacks, trauma and anxiety over my housing situation.  I guess people never really know how they’ll struggle until they are going through it.

P.S. I realize that staying at the Ronald McDonald House is a great blessing for most people and I’m not being forced into going back.  I also know that my insurance will only pay for the hotel stay if The Ronald McDonald House is unavailable.  So unless I want to have a permanent bed in the hospital somewhere, I’m going to get over my anxiety and move forward.

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