Planning our next move

Other than being completely discombobulated by the lack of sleep and many rapid shifts in our “normal” routine (hello back to school), I think we’re all doing pretty well. 

Veronica seems to be enjoying the freedom being at home brings — especially the ability to nurse every two hours. She had her first pediatrician appointment on Tuesday, and has been seen by the home nurses twice since her discharge. All seems to be going well with her, and she has put on quite a bit of weight even in the week since coming home.

Colin is doing relatively well. The diuretic seems to have helped. He’s still congested, but not as bad as earlier in the week. As long as we keep on top of suctioning his mouth and nose periodically, it seems manageable. 

We have noticed, however, a somewhat troubling pattern: he seems to desat when he is getting to the end of a feeding (about 10 ml left, typically) and immediately after. He also has been getting very red in the face and grimacing a lot. We think (as do several of the nurses) that he may have reflux. The doctor wants to monitor it for a couple of days before starting any medication, so we’ll see what he thinks again tomorrow. 

With all the changes the past two weeks have brought, we have become rather passive with Colin’s care. This has been complicated by the current doctor schedule, which has a new doc in charge every two weeks, rather than once a month. Tonight John and I decided it’s time to start pushing to get a little more aggressive so we can get Colin on track to come home.

So next week we will set up a care conference with the doctor and try to get a plan worked out for eating (we’re doing a very informal occasional bottle now) and for weaning the oxygen. We’re particularly interested in hearing about the pros and cons of switching him off the high-flow oxygen onto the low-flow (my name for it) system. One of Colin’s roomies has made the switch this week, and it seems to be helping him, and while every baby is different, it can’t hurt to ask.