Feeding tube awareness week - a day in the life & what I want clinicians to know

Today's topic is:   

What do you want clinicians to know about the day-to-day life with a feeding tube?  

This post for me is gonna be pretty short because

basically yesterday's post covered the majority of it.

I just want the doctors that don't understand feeding tubes to attend a seminar or something,

and for the ones that do,

like our fantastic GI,

Or our new developmental pediatrician,

I feel like they already understand

what day to day life with a tube is like.

well, as best as they can without  actually living it. :)

I am fine with the doctors not totally understanding being a parent to

a medically complex child.

Its not their job to be a parent that's my job.

I just need them to understand enough that they can do their job as a doctor.

That's all I ask.

And luckily we finally have a team of 

16 doctors and specialists

Who all understand their specialty

and are in fact fantastic at whatever their specialty is.  

Its only taken us a year to build this team, 

And that is a relatively short amount of time.

A LOT of families with medically complex kids look for years

before finding "the right mix of doctors"

if they ever do...

We have been truly blessed to have this after only a year.

********************************

The topic I missed was: 

Understanding Life with a Feeding Tube.

Explaining a day in the life/daily routine of tube feeding... and all it requires.

Well the biggest thing about
Life with Lily is she has different symptoms day to day

some days she acts almost completely healthy

most days she has just a few big issues

and other days she can hardly move

This really makes a difference in our daily routine.

I will try to explain our day as best I can...

8:00am-hopefully Lily is just waking up, with coo's and babbles,

if she wakes up screaming it is a sure thing it will be a VERY BAD DAY.

And we almost always will end up in the ER within 24 hours.

I turn off her pump unless I had to add more than her normal 18 oz to her night feed

I change her soaking diaper

check her temp

clean up any vomit

and if she fed the bed, clean that up.

I give her her morning meds then take off her extension

change her g tube dressing 

put ointment on her eczema spots and on her scars

and get her dressed

and lots of kisses and loves :)

Most weekdays we have a morning appointment

so we go to that

otherwise we go for a walk

which usually brings us to;

11:00-I give her more meds and

change her diaper.

If she feels warm I take her temp

11:10-She gets to have her first 4 oz bottle

if she doesn't finish at least 3 oz

I put it through the tube

Which entails attaching the extension, making more "non-thickened formula"

putting it into a 60cc syringe and slowly pushing it in

then unhook the extension, rinse it all out, and pray she doesn't puke.

11:40-1:00-floor time, or "therapy homework"

1:00-we can try to give her solid food if she is physically able to have it that day

2:00-Diaper change then Next bottle 

Whatever she doesn't finish goes through the tube

2:30-I try desperately to get her to take a nap

(It usually doesn't happen, but when it does she sleeps from 1-3 hours)

3:30-If she hasn't gone to bed by now she isn't going to...

So, if she is awake we go for a walk

or she gets play time, or whatever

This is the most unstructured part of the day

I LOVE this time of day

And if she IS sleeping I catch up on chores and if time blog,

or maybe just maybe read.

5:00 -time for her next bottle with special vitamins added

check temp and change diaper.,

5:30- work on "therapy homework"

6:30-bath time, lotion massage,

attach extension tape it down, and get in pj's

7:00-8:00- start putting her to bed depending how the day has gone will determine

weather its closer to 7 or 8 that I start trying.

Putting her to bed is a challenge.

Usually I rock her and pat her for 1-3 hours.

Sometimes I get lucky and she goes down really fast

(That happened three times this past week!!!)

But usually, It takes a lot of calming and rocking.

I would love to just put her in her crib and let her

"cry it out"

but because of her health issues I cannot.

I have tried it quite a few times and this is what happens:

Her heart rate rises way too much

and she screams until she vomits

and then screams BECAUSE she vomited

and then Vomits more and more

until her screaming causes an asthma attack.

Which needs an albuterol treatment which makes her scream,

then she becomes jittery and hyper...

Once she is asleep

(Usually about 10, but can often be 11 or 12)

I make 18 oz of formula, put it in her feed bag

attach the bag to the pump, prime the feed,

Put an ice pack in the bag with the pump,

give her her last med, attach the extension to the bag and start her night feed.

If she is coughing, and wheezing a lot I give her a breathing treatment

I then do any housework that needs to be done, 

and finally go to bed.

On most nights her pump will alarm, or she will wake up fussing or coughing or choking

and so I usually get up at least once a night.

That about sums up the AVERAGE day for us.