Some Not-So-Good news...

Lily's GI Tract seems to be shutting down.

she is barely tolerating 15ml/hr of gtube feeds.

She needs AT LEAST 45ml/hr to survive.

So we will be going home on TPN.

TPN is feeding a person intravenously, (IV) bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals.

You can read more by clicking here

I am VERY unhappy about this.

If we cant get her back onto g tube feeds this will destroy her gallbladder, liver, possibly kidneys and possibly cause more heart issues.

But at this point it is LITERALLY life or death.

So the good thing is TPN is gonna keep her alive

and it doesn't change HER quality of life all that much,

actually she is happier and has more energy when she is on it.

Its just The Long term effects of it that are really really bad...

 And her risk of infection has just increased drastically.

And then there are other added problems that come with having a port accessed 24/7.

Like what happened this morning for example:

We went up to the playroom this morning and Lily was VERY happy to be there

then she started grabbing her port and saying "OW"

I checked her port and the dressing was all wet,

which meant she had infiltrated

(the tpn and lipids had gone into her skin surrounding the port instead of into her bloodstream

I wrote a blog about this happening last time but it was only IV fluids not TPN you can read that post by clicking here)

I knew infiltrating TPN was BAD so I grabbed Lily and her IV pole and

all but ran back to her room.

The nurse saw me rushing and ran to ask whats wrong and 

all I said was "her port infiltrated, it's TPN"

That nurse called over to a bunch of other nurses as I got Lily back to her room.

By the time I had her in her bed and had gotten her shirt off there were 4 other nurses and 4 or 5 Dr's

and a couple techs all scrambling to help.

(I knew it was a big deal but had NO IDEA it was THAT big of a deal)

The good news was It had only just started to  infiltrate so there shouldn't be enough of the tpn

in her skin to kill all the tissue.

Yes, that's right ,TPN when it gets into the skin kills the tissue.

Then there was the issue of trying to save the port so she didn't have to have immediate surgery.

Luckily we were able to un-acccess her port (pull the dressing off and needle out)

and re-access (put a new sterile needle in and redress it) with only a few complications,

but after 3 or 4 scares her port was working again, so No surgery needed!

And the good news is her blood sugar stayed relatively stable the whole time!

The thing that really struck me was it took 4 people to un-access and re-access her

and they are sending us home with this for me and Shaun to do ourselves,

and that's assuming that Shaun isn't ever at work when there is an emergency...

They are planning on sending us home with nursing for 1 day a week

which helps but emergencies never happen on a schedule..

I am just a bit overwhelmed at everything I have to do for her medically now.

Her nurses here in the hospital get frazzled with all Lily has going on

(Her trach, g-tube, hypoglycemia, port, tpn, meds, therapies, Ivig, and such...)

 and they expect

me to go home and deal with it all by myself when Shaun is at work.

Yes, I am overwhelmed at the very thought...

But, it will all work out.

It just will.

God will make us equal to all that is expected of us,

all I have to do is lean on Him and He will get us through this.

I COULD NOT DO THIS with out my Heavenly Father.

It just would not be possible, nothing would.