Tuesday–Rounds, Feeds and Access Lines (CarePages Update)

Good news from today’s rounds–we’re starting to talk about criteria that needs to be met to move Elanor out of Intensive Care to a regular pediatric floor!

I will admit to being more than a little nervous about this potential move. I will feel better about it if we can be promised a private room-not because I’m a snob but because after my daughter almost died last week I’m not really thrilled about her sharing a room with another child and all of that child’s visitors who could cough all over her. With a private room we still have control over who’s coming in and out. They’re going to talk to the appropriate pediatric floor about this as a possibility as her doctors do understand and empathize with our concerns.

But before we can do that, there are a few things that need dealing with. The biggest is the issue of access. Elanor has knocked out multiple IV’s, and in babies her size IV’s last days and we need an access point that can last two to three weeks. She has a “central line” in her groin, and while it was put in under sterile conditions, they don’t like to keep that type of line in long term. Right now they’re talking about putting in a “PIC” line, which would need to be put in by a NICU doctor or nurse as they have the most experience with that sort of thing in babies her size.

Elanor’s blood pressure and organ functions continue to trend towards normal, which is a relief, but she’s still on a few medications to help regulate them.

The infectious disease doctors had been thinking a two week course of action but the new ID doctor is a little more conservative, and as of yesterday is recommending a 3 week course of action, so that would be ending her antibiotics on 12/1 at the earliest (and she would be hospitalized the whole time as well due to her very young age).

We met with the hematology team yesterday. They are going to check me for a specific disorder, and then Elanor for several just in case.

Today we met the GI team and have not yet heard their recommendations.

We also met with the Occupational Therapist who specializes in babies’ suck and swallow today. She evaluated Elanor and decided she was ready to try a bottle again. Elanor drank about 1/2 an ounce (which isn’t bad considering she’s also been on continuous feeds)which is a great victory. The suck and swallow doctor is also recommending a consult with a lactation specialist in a few days to try to start the process of getting Elanor on the breast directly instead of the pump, bottle, feed process we have going on now.

So all good news, heading out of the woods.

Still no answers about what happened or why, but that may just be the way this particular cookie crumbles. Which is frustrating, but how things are.

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