Reherniation update

Yesterday was another long day at the hospital meeting with surgeons. I'd been told to call if I hadn't heard from our surgeon's office by noon. I called just before 9 a.m. I can see signs that Samuel is deteriorating. He is eating less and less. He has some early signs of dehydration, despite my efforts, and is still not really pooping. Sometimes he is very upset and I can see the bit of worker breathing at the top of his chest. My usually happy boy is fussy and wants to be held a lot.

Of course, he put on a big Mr. Happy Pants performance for his doctors yesterday. I'm sure this was partly because he had his very favourite thing to play with - the long sheet of paper that covers physician exam tables. But he also has periods of a few hours at a time where he eats more and seems a bit more well. We are wondering if the bowel is moving up and down into the chest and causing more or less distress depending where it is. We are at home now, trying to monitor Sam with my blend of mama intuition and in-the-trenches training about the respiratory and digestive workings of a CDH babe.

So what about my prediction that surgery would be early this week? Well, at this point, surgery is scheduled for February 9th. I am very sure that Samuel should not - cannot - be left to deteriorate for another three weeks. He will not have the strength to manage this kind of surgery if we wait that long and I know that his surgeon agrees. However, that is the soonest that they can secure ten hours of time in the operating room and make all three surgeons available for an 'elective' surgery. Samuel is not in enough distress (yet) to be bumped up; there are other children who are sicker and need to be taken care of first.

It is heartbreaking and frustrating to wait, hoping Samuel doesn't have to get a lot sicker before he gets the surgery he needs. The balance of patience and vigilance that I am seeking today is hard work. And yet, hanging out at the Children's Hospital always offers up a healthy dose of perspective. We waited for three hours for our surgeon yesterday because she had her hands wrapped around a huge cancerous tumour in someone else's child. I'm not about to get all foot-stompy and petulant about where we fall in that queue.

I am not going to let Sam fall through the cracks either. But I don't think I need to worry about that just yet. Dr. Brindle emailed us last night at 9:00 when she was done operating on that other child. She'd been reviewing Samuel's xrays and wanted to share her thoughts. She called me this morning to talk more about a plan, listing several other people she'd already consulted about the best route for Sam. We have great people on his team who care about him and trust our parenting. I must have faith that he will be looked after.

I have been sending up prayers for these other ill children and their families, who I do not know except for understanding that near suffocating vibration of fear they are probably living with. A couple of Samuel's CDH buddies - Killian and Jude - also need some extra love, prayers and juju sent their way. (Their blog links are in the CDH Friends list on the right side of Sam's blog.) Of course, I want my baby held in grace, light, love, compassion. But there is enough of that to go around.

Dear Father,

Hear and bless

Thy beasts and singing birds.

And guard with tenderness

Small things that have no words.

Amen.