Don't forget the basics.

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Update (kind of long) on my new home health patient 'the baby". I told you all she was 2 years old and CHARGE Syndrome, vent. support and many congenital heart defects (her heart is in backwards for starters).

Anyway, I did my 15 hour Sunday night shift with her and passed to the day nurse at 6a.

Get a call from same nurse at 10:30ish that night that baby is in hospital. It was supposed to be a direct admit but the room wasn't ready so baby, mom and nurse sat in ER for over 5 hours. Apparently her SaO2 was hitting 30 to 50 and bouncing back to 70's and low 80's which is her norm.

Talk to the family next day and although the Cardiac Doc has still not been in to see her he is talking about a blood transfusion. I tell the SO on the phone to hold on so I can try to connect the dots because I am not seeing why a blood transfusion in response to low sats. Only been with this baby for a month and thinking out loud ask if she is so anemic that her sats are bottoming out. About twelve hours later I get another call from the family and they say that I was right and the Doc is waiting to see if he can just use iron supplements instead of transfusion. Shaking my head now going huh? because they then tell me that baby had the same thing happen a year ago and the transfusion was what they did.

Today, I get the call that the pulmonologist came in and said that he is discharging to home if this is all that is being done in hospital ( duh, we have three full time nurses at home).

So, end of long story, I googled around a bit while waiting to see what they would do and found some great reading on kidswithtubes.org and today when I got the call that baby was coming home I talked to the mom a bit more about feeding. Got the name of the primary pediatrician and called the nurse there.

Introduced myself and made nice and after I updated them on the recent hospitilization and what was done I asked for a medical reason why this two year old was still on straight Pediasure and had never even had cereal introduced to her diet.

The nurse was appallled and totally out of the loop as happens when a lot of specialists get invoved and she immediately got the pediatrician to FAX an order to the home health agency giving us permission to begin a regular toddler diet pureed through the g-button adding one new food at a time as tolerated and just keep the Pediasure order for PRN supplement and travel needs.

I cannot wait to "feed" this baby.

It is the proverbial 10 blind men all touching the elephant and all describing a different animal here. All these top of the line specialists worried about her heart and lungs we forgot to feed the baby.

Don't get me wrong, Pediasure is a great product for supplementing nutrition but a steady diet for two years? yuck!

What a waste of our Medicaid dollars but don't get me started on that.

Later, all....Happy Easter.

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this was very touching, thanks for sharing it.

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