FW: mav

he's able to open his eyes today.

They have turned off the paralyzing medicine today. He has his little eyes open and is making sucking movements with his tongue, but he's not moving anything else yet. They're trying him on a different setting on his ventilator to see if he'll tolerate breathing some on his own. He's still pretty edematous, so it's a little difficult for him to breathe. Say a prayer for him -hopefully he'll do ok. He's still on all the drips, they'll wean those if they can. Just very slow progress. Thanks for your comments - I enjoy hearing from you all - jc

Mav is doing about the same today. His weight is stable - no losses, but no gains either. They're trying to wean his paralyzing medicine still to see if he'll tolerate it. He's just starting to try to open his eyes. Greg made it home with the kids. My mom is coming down here tomorrow to stay with me this week. All his drips are just about the same. His vital signs are stable. Progress is slow, but at least we're not losing ground. jc

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Here is Mav today. He's slowly doing better and actually losing a little weight for the first time in a long time. He's at 4.9kg today - just over 10 1/2 lbs (I think his high this week was 5.3kg. They've weaned his ventilator a little today and also his epi drip. They've also turned down his vecuronium (the paralyzing medicine) a little and are slowly going to see how he tolerates it. They've also turned off his diuretic coctail and had stopped replacing the output from his abdominal drain (they started replacing it 1/2ml per ml this evening, though). His face is actually looking a little less edematous. We are very encouraged by his progress - however slow it is. jc

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This is a picture of Mav on 11/5. We finally figured out the email option. I'll be able to post more pics now. He's such a strong baby.

Mav has been behaving pretty well today. During the night last night they were able to turn his ventilator down a little bit and decrease his nor-epi. He's had some more output from his abdominal drain. All these things said, it seems as if he's not hanging on to as much fluid. He's still not letting go of much, but I think it will just take some time. At least he's not continuing to gain alot of weight. They haven't made any major changes today and probably won't tonight, either. Greg is going back home this weekend and will stay with the kids next week. I'm staying here and my mom is coming down to stay with me. The next week we're switching places. I had a dream a few nights ago that I went back to work and he was in the hospital in OKC and I would go by and check on him. I SO hope that won't be the case. Just wanted to thank everyone for the posts, cards and prayer-grams. We appreciate all of you. jc

A bit of a rough day today for Mav, but I think he's slowly beginning to do better. The good news is the heart echo this morning looked good. He's very edematous and still holding onto the fluid they're giving him. His labs for his renal function were increased this morning (BUN 40's and creat 0.9) meaning that his kidney function was decreased. They were going to place a peritoneal dialysis catheter this afternoon (a catheter in his abdomen to try to use dialysis to get some fluid off), but the surgeon came in and said he didn't think it was a good idea right now with all the pressure and swelling in his abdomen. They really weren't even very confident at how well it would work, but they were at the point where they were willing to try. Then, they redrew his labs this afternoon and his creatinine was down to 0.5! I'm happy for the small things. They're hopeful he's starting to turn the corner. He always does this after any surgery or procedure and it just takes him awhile to get better. When he's in the middle of this time, it's hard to remember it just takes time for him to rebound and I worry alot. He's paralyzed and sedated right now and has been since yesterday. It's easier for them to ventilate (breathe for) him now with him paralyzed due to all the edema in his chest. He's back on all the drips - epi, norepi and milrinone. They've restarted the diuretic coctail. I think they're planning on taking out his pacer wires tomorrow and his mediastinal chest tube (the tube draining the drainage from his mid-chest - it was placed during his heart surgery on Monday). Keep the prayers going - we want to be home by Christmas! jc