The Tube & The Hospital

On Wednesday our Outreach Nurse came with the Dietitian & another nurse to our home to insert Amber's nasal gastric tube.  We discussed how we would supplement her feeding (bollus feeds vs drip feeding) & learned how to use the accompanying paraphernalia.  Dylan was fantastic & rose to the challenge of learning how to insert the tube himself - thank goodness - as I couldn't watch.  The gagging sounds were not pleasant.  It's funny though how it is the little things that get to you.  I had previsualised a clear plastic tube with a nice, discreet clear plaster on her face.  To see a pale yellow tube & a big white plaster across her cheek completely threw me & I found this the most upsetting part.  It was not what I had mentally prepared myself for.  My cute, little baby didn't look the same anymore.
Our game plan was to feed Amber as per "normal" then start with a 20ml gravity bollus feed of her Neocate formula half an hour afterwards working towards an intake of 250ml over a 24 hr period.  Theoretically this would give her an extra 250 calories a day.  The first bollus feed was given successfully while the nurses & Dietitian were still here.  It was successfully vomited back up just as they were pulling out of our driveway.  Sigh.
I had to work Thursday afternoon so Amber went to Nana's.  As Nana had not yet learned the finer details of the tube we opted to just bottle feed & spoon feed her in my absence.  She fed ok from the bottle but wasn't very interested in her puree.  She also managed to pull her tube out during her sleep.  Dylan has impressed everyone by putting it back in himself when he has only had the one lesson.
I got her home that evening - and then it began.  The start of vomiting & diarrhoea.  We have been experiencing such extremely hot days here that it has been a battle to keep hydrated.  More was coming out of Amber than was going in.  I slept beside her that night on a mattress in the lounge as I was afraid of her gagging in her sleep.  It was so hot she wore just a nappy (diaper) & everytime she needed to vomit I would see her poor little body heave with her ribs & spine clearly visible.  My poor baby.  With her previous weightloss we didn't muck around & got her straight to the hospital on Friday.

Amber being rehydrated in Hospital

The staff were great & we had a quick introduction on how an NG tube is used with a feeding pump.  Amber was rehydrated overnight with a slow feed of Pedialyte.  The vomiting stopped & we were home again the next day with a new feeding pump.
The outcome has been a blessing in an unexpected form as we are finding the drip feeding a lot more successful than the bollus feeds.  She is still reluctant with her spooned food but is now nursing the same again.  The pump allows us to get more calories into her as she sleeps whereas she seemed to just regurgitate the bollus feeds - it was feeling a little like one step forward, one step back.
It has been hitting Dylan & I so hard how much she has changed.  I certainly embrace the Niemann-Pick Foundation's motto - Perservere.