After Surgery Stress and Letdown

(I think I published this on Caring Bridge but never here)

(Originally written) FRIDAY, AUGUST 27, 2010 10:20 PM, EDT

Today was a much better day. I (Joanna) have a better perspective on David's entire medical situation, and even specifically on the pulmonology visit yesterday.

1. It is clear to us now that the docs need to be in regular communication with one another; this started yesterday with a call from the pulmonologist (I can't keep typing that word, his name is Dr. Bacot, prounounced bay-ko) to Dr. McGovern (Dr. Pulver & Tripp's partner, we like him), and we are going to make sure they're talking regularly. It's a reminder that we are the only ones talking to everyone, and we are David's advocates.

2. We will get this more or less sorted out over time. It is our job to take care of David (see below) and while there will be screw-ups along the way, we will do the best we can for him, as any parent would for any kid. We have a lot of support from friends, family, church, co-workers, etc., we have a great Early Intervention team, and we do like and trust most of the medical team (I say "most" because Dr. Bacot is new, and there's also a new GI guy coming on board, so we will have to see).


3. Today I got to snuggle with David on the couch while Simon was napping. We were tummy-to-tummy and I could feel him breathing, his little tummy pushing against mine. His breathing may be sub-optimal (a Dr. Pulver-ism), but it felt pretty wonderful to me.

4. A few months ago we sang this hymn in church, and I copied down a couple of the verses. It's from 1749 so the language is a bit clunky, but I like it:

Verse 2: The task thy wisdom hath assigned
O let me cheerfully fulfill
In all my works thy presence find,
And prove thy good and perfect will.

Verse 4: For thee delightfully employ
Whate’er thy bounteous grace hath given;
And run my course with even joy 

And closely walk with thee to heaven.

Charles Wesley, 1749, “Forth in Thy Name, O Lord”



It is our job to take care of this wonderful little guy. I'm not sure what to think or say when people say that God chose us to be David's parents. But we are his parents, and we hope to cheerfully fulfill our task, and run our course with even joy. That's probably not gonna happen every second of every day - there will be plenty more contradictory opinions, lack of communication, etc., to deal with, plus just being upset when he is not doing well. But we're gonna do our best. ... and he'll get better. He'll get bigger and stronger and while he may have some of the same issues for a long time, they won't always be this severe, and if he has new ones we'll figure those out too. 



5. Here's just something else I am thinking about: "And when you turn to the right or when you turn to the left, your ears shall hear a word behind you, saying, “this is the way, walk in it.” Isaiah 31:21. This is our family, this is our son. This is the path we have chosen for our family's life, and it's so wonderful.