Tube Feeding and Health Professionals

The last topic I am going to cover (late) for Feeding Tube Awareness Week is feeding tubes and health professionals.  For the most part I have been SO spoiled with my health professionals.  We have hit a few bumps in the road and there is one particular intern in Hobart who WILL NOT be trying to place an IV into my kid again EVER.  But there are quite a few who deserve boxes of chocolates, gold stars and halos made out of glittery pipe cleaners.  If you happen to be a health professional and your deepest heart's desire is to be deserving of gittery-pipe-cleaner-halo status, here are a few do's and don'ts that will help you get there:

DO....

....recognise the expertise that a parent brings to the table.  Over and over again I have been told by my gold-star doctors and nurses that while THEY have medical degrees and know lots of clever stuff, I am the expert in Kaylee.  I don't know the medical terms for things and half the time I don't know exactly what I am looking for or even what I am looking AT, but if I say something is not right it is worth checking out because I am with the kid 24 hours a day.

....boost the confidence of the parent wherever possible.  I have raised 5 healthy children through baby-hood, I have a degree, I have worked in animal care so I am used to using syringes and measuring feeds etc....and taking home my baby with a feed pump TOTALLY SCARED THE PANTS OFF ME.  Because my doctors and nurses and care manager and everyone else on my team had faith in me, I felt able to step up and take the reins which made things so much better for Kaylee and our family.

....recognise that what is sustainable in the hospital may not be sustainable in a home environment.  When we came into the Children's Hospital this time around the ICU nurse was perplexed to see that Kaylee's feed rate was 32ml per hour over 21 hours a day.  Why on earth would she have 3 hours a day off the pump?   I giggled and pointed out that at HOME it can be quite handy to be able to go for a walk or take her up to an appointment without lugging a feed pump!  Parents get tired and need to sleep, there is no shift change or hand-over at home and family life continues regardless of feed pumps

....treat EBM like GOLD.  I work VERY, VERY HARD to supply Kaylee with expressed breast milk.  If it gets wasted through carelessness or ignorance....I am likely to kill the waster a thousand different ways in my head.  Seriously, be careful with the BM.

...fake confidence.  While tube feeding is reasonably common, I know that NJ tubes and EBM is not.  A doctor or nurse who confidently asks questions and lets me know that he/she is interested in learning and is totally sure that they and I will work this out together makes me feel safe.  If their eyes widen and they start stammering and stuttering and get all flustered.  If they use whiny tones about what they don't know when talking to co-workers or supervisors within my ear-shot.  If they completely FREAK OUT then I don't feel quite so safe.  It is possible to be confident without being arrogant.  It is possible to be open to learning while still giving an air of "Oh I totally know what I'm doing here and I am totally NOT going to kill your kid if you go to sleep".  So yeah, confidence is good.

....refer patients/parents to support groups.  Medically, tube feeding is not a huge deal.  Socially and developmentally it completely is.  Getting to know other people who have had to tape stuff to their kid's face daily is a very important thing for a tubie's parent.  Getting to know tips and tricks to stop tubes being pulled out and sustain feeding schedules is invaluable.  Lots of health professionals counsel parents to "stay away" from the internet.  It is worth realising that (a) they won't and (b) there are excellent resources out there.  Start by giving them sites like
tube feeding awareness

tube feeding awareness on Facebook

tube fed kids

....back up other health professionals, especially the nurses.  Whenever I am in hospital I am putting Kaylee's life into the hands of the doctors and nurses there.  The nurses are the ones responsible for the day-to-day care of Kaylee and if I have no confidence in their abilities I cannot sleep, shower or pee with peace and confidence.  If you have an issue with a co-worker, take it up with the co-worker and not in my earshot.  Help me pee with peace and confidence.

....maintain an open line of communication.  Being able to ring and talk to a doctor has prevented us from having to come in to hospital numerous times.  

Don't...

...ask a parent to defend a diagnosis or course of treatment.  Check the file and make a phone call  by the time a parent comes in to hospital they are usually exhausted and frazzled, give them a break.  We are doing the best we can.

...walk in to a patient's room at 4am and ask the parent what the diagnosis is and why the child is on the current course of treatment.  There's a little thing called hand-over that should have happened at the start of shift.  Parents should not have to educate you at 4am.