Drew's status

It's been a busy few days for Drew.

Friday afternoon, the tubes going to ECMO were cut. The cannulas were left in his heart. When I first heard that was what they were going to do, I panicked. They do that if they think the baby might have to go back on ECMO. Turns out, they had something like 5 trauma surgeries come in on Friday afternoon that were emergencies. Drew was not an emergency so they just cut him off of ECMO. Raymond and I watched them cut the tubes to essentialy get him off of ECMO. He did well.

He was decannulated early Saturday morning. They put a central line in his neck incision that exits through his chest. The heavy doses of heparin were stopped. There was just one problem--he had a large hematoma on his right shoulder. Basically a blood blister in the fatty tissue of his back. It's from a combination of laying on his back for over 2 weeks with little movement and all of the heparin.

It continued growing throughout Saturday morning and was pretty firm/hard. He was given a blood product to help his blood coagulate and it stopped growing and got a bit softer. It's not really going down in size but it's not near any major organs. They are watching it for signs of infection right now but there's a possiblity that it may have to be evacuated/drained. It just looks so painful. He literally has a humpback right now. :( They've tried sandbags on it and laying him on it to help that blood disperse but it's not working as of yet.

His carbon dioxide keeps fluctuating--as high as 71 today and as low as 46 yesterday (35-45 is optimal). The surgeon isn't TOO concerned about that though. His ph level is the one they are watching closely. Today, he's ranged from 7.2 to 7.3 (7.35-7.45 is optimal). His vent settings and respiration rates have been increased to help him; at times he'll breathe over his vent. He's working very hard.

Drew had a very difficult morning today. He was very agitated by touch and noise. He would flail about and cry. So they upped his pain medication and shut the doors to the ECMO room to mute the noise. His nurse just kind of left him alone all day unless she needed to do something and he's calmed back down.

One of his surgeons spoke to Raymond this morning and told him that none of this is out of the ordinary for a baby just off of ECMO. This is what she would expect to see. Drew's holding his own but right now, holding his own isn't good enough for them to do the surgery. :( He needs to be more stable. Doing surgery right now would not help with the carbon dioxide or ph issue.

After so many positives, it's been difficult (for me) to see him backslide and make no progress at all. And his poor back. I would post a picture but it's really, really bad. But it sure is good to see him without the ECMO tubes in his neck and the machine (and it's backup) out in the hallway.

Here he is without the ECMO tubes: