jonah - tuesday, march 24th

Jonah had a really horrible time during his bandage change tonight. They lowered his morphine .1 (for a total of only .2 lower), and he was almost inconsolable the whole time - screaming, flailing, writhing... the worst yet (since I've been in on the changes anyway). I actually had to end up holding him and feeding him a bottle while they dressed his arms and legs.

It broke my heart. I don't know how they expect us to do it on Tylenol only, but I don't want him to be on strong drugs either. I think the Ativan can be addictive too. I don't know if this will slow us down coming home or not. I know that distraction will work best during dressing changes, but how do you distract a 4-week-old?

Please be in prayer for Jonah tomorrow night if you think about it during his dressing change time (we usually start at 8 pm eastern). We need divine intervention, and I have not been prayerful enough about his pain management. I was going to leave the bandage changes up to Sabrina and OT tomorrow night, so I could come home early, clean a little, and get in bed, but now I doubt I'll be able to leave him. Not that I don't trust them to do it (because I definitely do), but I'm just afraid he'll need me for consolation, and I won't be there. What if he needs me, and I'm not there? I literally can't bear the thought.

Here are a few pictures from the last couple days. Besides his dressing change, he's been a sweet, sweet boy - which I'm pretty sure is his personality. But DON'T mess with him when he doesn't want to be messed with. I really need to brush up on my "dressing a closed fisted hand" and "bandaging a flailing leg" skills. I am NOT smooth.

The tops of his legs are still horrible with new blisters every day. I'm hoping Transfer is on its way tomorrow (although they've told us it will be the beginning of next week before we will get any), because it's just getting worse and worse, and I feel like the Transfer holds better than anything else. Everything else slips down his leg and leaves exposed raw places at the top- we've tried Lite, Mepitel, and Vaseline gauze (in addition to the Transfer). I'm out of Transfer samples, but thanks to those of you who sent me some. I like it the best, but the Lite works well too. His belly is also looking really bad. He also has a new blister on his chest from where he clamped down and decided to hold his breath during bandage change a couple nights ago. The nurse had to rub in a circle on his chest to get him to breathe, so now there's a big blister (three times the size it was this morning) on his chest as a result.

On a brighter note, we are seeing substantial healing in his hands and feet, although to you guys it would probably still look really bad. If you could have only seen the before pictures... I'd like to post pictures of some of what's under the bandages to give you an idea of what Jonah is going through, but I know many of your kids look at the blog and want to see baby Jonah, so I don't really want to post that kind of thing. Plus, it's just sad. But please know that although you see precious pictures of his face, there are many very bad spots under those bandages that need your prayer and God's healing. Thank you for your specific prayers for his little hands and feet. The flesh is mostly pink now instead of red and purple. They are still bleeding some, but a vast improvement over a couple weeks ago.

Okay, now to the pictures.