Delivery Day

Today marked an unusual milestone for us which might not mean all that much to those folks who don't live by the timing of their weekly infusion delivery. Today we got the (hopefully) last weekly shipment of TPN.

Usually we get two big cardboard boxes delivered each Tuesday morning by our friendly UPS man. On good weeks the delivery comes ahead of the garbage man so we can recycle the boxes that day. In these boxes are all of the things that we need to do Ellie's TPN for the week and a few extras in case we get fat thumbs while setting up her infusion and contaminate an extra set of tubes. Eight bags of fluids (one for each night plus an extra), tubing for TPN and omegaven for the week, syringes etc. All told there are about 150 items in each shipment that need to be opened, checked and stored to make sure that we have what we need. It all goes into one min fridge and big cabinet that Karlene keeps neat and orderly for us which makes the evening set-up much easier:

This made me think of the change that is about to happen as we experiment with life after TPN and how much easier this will be after December 1 and also how much easier it will be to travel with Ellie without TPN.

To give you an idea of what it takes to go on the road, here is the list of things that we need to bring for just an overnight, 80 different items by my count and close to 250 individual items to bring (but I could be missing something). All of the bold things won't be necessary when the TPN turns into hydration.

Zevex Infinity formula Pump and backpack
Charger for Pump
Elecare (1 can for every two days)
Mixing bottles (x3)
Sippy Cups
Zevex Bags (a new bag for each day)
Mic-Key extensions (that connect her pump tube to her g-tube button)
Safety Pins (to pine her tubes to her clothes to keep them from pulling)
Silk Tape (the duct tape of the short gut world)
60 ml syringes for flushing Mic-Key extensions
Small oral syringes for meds
Replacement G-tube kit
Clean Dressings for her g-tube
Bacitracin Ointment (bacteria)
Steroid Cream (swellling)
Nystatin Antifungal cream (fungus)
Q-tips
Lubricant (for reinserting an old g-tube or inserting a new one)
Ostomy bags( 1 for each day)
Ostomy bases(1 for each day)
Ostomy wipes
Cotton balls (lots and lots to absorb the fluid from her ostomy)
Rice Bag for warming ostomy bases and making them pliable
Stoma Powder
No-sting barrier wipes
15-20 wash clothes for bag changes
Curved scissors for cutting holes in ostomy bases
Emesis basins
TPN Pump (CADD Prism)
TPN backpack
TPN bags ( one for each night plus and extra in case*)
Infusion vitamins

10 cc syringes to add vitamins to TPN
IV Zantac
3 cc syringes to add Zantac to IV bag
Portable sharps container
D10 bags
9-volt batteries
Rechargeable battery pack
Omegaven Pump (Curlin)

Omegaven Backpack

Omegaven Pole clamp

Bottles of Omegaven (one for each night plus an extra in case*)

Portable IV Pole

C-cell batteries
TPN Tubing
Omegaven Tubing

Vented Spike adapters (the IV bottle won’t drain unless it is vented. Almost learned this the hard way)

Omegaven Hangers

Y-extension sets (to let two fluids go into one central line)
Positive Pressure Caps
Line covers
Saline Flushes
Heparin Flushes
Alcohol wipes
Hydration Fluid Bags
Hydration tubing
Hydration Pump (CADD Prism)
Central line dressing kits, 2 per week, 1 for scheduled changes and 1 unplanned.
Sorba View dressings for her central line site
Sterile gloves in medium and large
4x4 Tegaderm sheets
Sterile Gauze
IV Clamps
Absorbent Chux Pads ( contraband hospital pee pads)
Replacement bed linens (sometimes even an overnight doesn’t do the trick)
Tylenol
Thermometer
Scissors
Tweezers
Sterile water
Diapers
Overnight diaper for night time (a regular diaper just won’t hold a pound of fluid like an overnight will)
Diaper wipes
Diaper scale (travel version, the hospital grade version stays home)
Glycerin Suppositories
Cutting Board for the clean space for TPN set up
Sanitizing Wipes
“Green Book” (our lime green binder of all of Ellie's daily logs, monthly summaries, lab reports, etc)
Medical history USB Drive
Baby Monitor

YEah, that's about it, I guess. Amazingly we can pack for a week away in about 45 minutes if we need to and somehow manage to get all of this stuff into a car that is smaller than a moving van. In fact since the Pack n’ Play went away a few months ago, we even have extra room in our normal sized car. But we pack knowing that even a little thing from this list will either cause us real problems or even make us come home prematurely. If the tubes don't work, the food doesn't flow and so on. we double and triple check everything...

A good thing is that coming home is always easier than going since most of these things are used and tossed when we are away. But don’t get me started on the amount of waste we make, at least we don’t need a separate garbage bin like some other short bowel families.

Next week's shipment of boxes will be an odd thing for us. Let's hope that the changes go over well with the only person in the room who doesn't really know what is in them. She prefers to hide in the boxes and make snowmen from the styrofoam that insulates the fluids.