Boston Bound

Boston Bound

This Fall is so different from last, this time last year we were either admitted or in between admissions following Joey’s last surgery.  He was so sick.  Here we are, getting to enjoy Summer’s shift to Fall.

This time next week Joey and I will be in Boston, probably just settling in (cross your fingers for family housing).  We will spend a day full of pre-op testing on Tuesday and then undergo his 4th heart cath on Wednesday, which is grounds for an automatic admission.  The reason for this is to take a peek into his heart and verify that his insides are as happy as his outsides.  We will also have better insight as to the size of his right ventricle, is it growing or is it not, as well as how his pulmonary arteries are growing.  Historically they’ve been on the smaller side, and if they present as still smallish and are affecting pressures, etc we may need to intervene.

How do I feel?  It is so hard to say.  Joyful to be here, scared to be here, grateful to be here.  While talking about it at dinner tonight Malcolm said that he doesn’t want Joey at the hospital – I didn’t cry, woah.  This isn’t about fixing Joey or his heart, but giving Joey and his heart opportunity.  Ultimately all of this is out of all of our hands and all we can do is love, love, love him.

So the balance continues, as always, and I’m hoping this one is a quickie.  I’m so not looking forward to BCH food or sleep chairs (honestly, I can’t even call them beds) but can’t wait to see Joey’s cute little stinky face when they are done.  I’m recognizing my PTSD as what it is, and knowing that when my fear comes it’s not because of where we are now but simply because of where I’ve been.

I’m loving you guys all so much and will absolutely, 100% provide updates throughout the week.

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5 thoughts on “Boston Bound

  1. Good luck!! You are right- the sleep chairs are just torture devices. I hope you don’t have to spend many nights in them. We will be thinking of you both and waiting to hear good news!

  2. Be still and know. I can’t imagine how I would handle the feelings you’re dealing with. Please know we are holding your family up to the light. I hope this trip to Boston brings joy along with the worry and sleeplessness. Hugs from The Rodriguez 3

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