Thursday, February 21, 2013

Pump problems - BEEP! BEEP! BEEP!

BEEP!  BEEP!  BEEP! (and on and on) is what I kept hearing this morning.  The high pitched, ear piercing sound of Brayden's feeding pump.  A beep to alert that there is a problem.
The nurse worked on the pump; I worked on the pump; changing bags, adjusting settings, turning on, turning off.  A few minutes would pass, the pump seemed to be working and then the beeping would start again.

So we pulled out the back-up pump.  The back-up pump is quite a fickle little thing.  Technically we have rented it for so long that we now own it (the way our insurance and supply company handles it not us) so we cannot exchange it for a new one.  It works for a couple of weeks and then seems to need a rest.  So we swap the two pumps back and forth.

Brayden's pump is a Kangaroo Joey.  It seems to me that the feeding pumps are not really meant to run 20+ hours a day, every day of the week, they are made more for bolus feeds here and there throughout the day and not having to run continuously the way we use them.

After trying the back up pump, we heard once again that high pitched BEEP!  BEEP!...

The back up pump was not working as well.

We cannot give him his food by syringe effectively.  His GI system cannot handle too much at once so his pump is set at 42 ml/hour.  That means he gets 0.7 ml per minute (that is a tiny amount, you spit more than 0.7 ml).  I cannot do a syringe that slow for 20 hours.

It was 7:30 a.m. the medical supply company was not open yet.  However, one can call the answering service that will alert the on-call staff.  So at 7:30 the phone calls started.  I waited to hear back from the on-call person.  Two hours go by and no phone call.  I call again, this time the office is open...they have no ticket and no information from the answering service and we start that process again.  Again, I wait and no return calls to confirm delivery.  More phone calls and being on hold for soooo long.  Finally, they find that the pump is out for delivery.

The pump finally arrived around 2:30 p.m.

We cannot survive without his feeding pump.  I may have said to the medical supply company, "I need to know that the pump will be at my house soon otherwise we need to make plans for my son to go to the hospital", not to be too dramatic but I wanted a serious sense of urgency.

And when the pump with delivered the tech showed me how to adjust the volume of feeding pump.  Me, "You mean it doesn't have to be such a terribly loud noise?!"  Oh yes people, we have had several Kangaroo Joey pumps in 5 years and I just found out today that the BEEP! has volume control...the one bonus of the day.

1 comment:

Rhonda Stafford said...

I'm so sorry to hear about this incident - that must have been really scary! I just stumbled across your blog and figured I'd post saying thanks for sharing your experiences, and I'm praying for Bradyen! He looks like a very sweet boy. Also, I figured I'd recommend my favorite cerebral palsy website - it's full of useful resources and provides a great sense of community (especially on their facebook page). Anyway, check it out! It's called Cerebral Palsy Family Network. It makes going through all of this a little easier and less lonely. Hope you find it helpful - good luck to you and your family!