Posted 2016-08-05T02:43:34Z

Aug 4, 2016: It went great!

With Dr. Peacock
[With anesthesiologist Dr. Peacock right before surgery]

Edward's port surgery yesterday went great! Thank you for all of your prayers!

I was worried about two things--that he would freak out while getting his IV put in and that the transition from pre-op to the operating room would be difficult. I wanted to be able to take him all the way back to the OR, and I wanted Molly not to panic in the process. I couldn't get any answers ahead of time, because all the anesthesiologists have different rules.

My first worry lifted when they told me Edward wouldn't have his IV put in until he was already asleep! I know that just makes sense, but for other procedures he's had an IV placed first, so I assumed it would be that way. What a relief! When he realized he wasn't going to have a poke, he relaxed and started playing, smiling at nurses, and answering questions instead of just clinging to me and hiding his face.

My second worry disappeared when the anesthesiologist entered the room--she was our favorite one from 2 1/2 years ago! She allowed me to take Edward back to the OR and hold him while they put his mask on and he fell asleep. He fought a little when the mask first went on, but it was nothing compared to the panic and screaming it would've been if I'd had to leave him before he was asleep. I'm so, so grateful! I also learned that I can ask for a specific anesthesiologist for any future surgeries. Of course, we hope he'll never need another surgery, except the one to remove the port when he gets better, but when that day comes you better believe I'll be asking for Dr. Cynthia Peacock-McKenzie to be his anesthesiologist! As for Molly, she was easily distracted by child life specialist Lindsey, and never knew I was gone until I came back. Praise the Lord!

The surgery itself went very well. Dr. DeCou was hoping to be able to put the new titanium port in the same location as the old plastic one, and that's just what he did. He even went in through the old incision, so Edward's scar is exactly the same. Edward's recovery room nurse was the same kind, friendly one he's had at least once before in recovery (Jennifer Schmidt). Though the day was exhausting, it was so clear that the Lord was answering our prayers (and yours!) over and over. Thank you for praying! And thank you for your messages of encouragement--they were really helpful.

Kameron and Henry were back in Kalamazoo working on some tasks at home and at the church. I could've left Molly with them or with the multiple people who offered help, but she's still nursing and I just couldn't bring myself to leave her for that long. At first, I was feeling foolish about that, because I initially thought we'd be home by early afternoon, but when Edward's surgery got pushed back further and further due to an emergent surgery on a NICU baby, and when Kameron ended up being unexpectedly and urgently needed for something that would've been difficult with Molly in tow, I was grateful that the Lord has even the smallest details in His care.

Edward and Henry were outside most of today, and Edward played like normal and never complained of any pain or discomfort. He asked to look at his incision several times in the mirror and thinks it's pretty cool.

In other news, Edward's IVIg infusions and 5-day dexamethasone pulses have been moved from every three weeks to every four weeks, because he's been a lot better for the last few months. He's speaking more clearly (though the nurses and child life specialists down in surgery couldn't understand him, so I realize the clarity is more evident to us than to others), and his falling, ataxia, tremors, sleeplessness, panic, rage attacks, clinginess, and motion-based terror have all lessened or disappeared entirely over the past several months since his last rituximab infusion in March. We are grateful.

Thank you so much for your support! We are so blessed to have all of you praying for us.

Before surgery
[Waiting in pre-op]