Max Munakata Cares

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Back to Max Munakata

This page documents all the steps for Max's regular medical care.

Contents

Disconnecting TPN/Omegaven

(5 min, daily, usually ~9am)

Wash hands with soap and water, use hand sanitizer throughout, don't talk or breathe over open connections/vials.

Supplies

  • 1 saline syringe (2 cc)
  • 1 heparin syringe (2.5cc)
  • 2 alcohol wipes, 1 opened cleanly.

Drawing up syringes

Every other day, draw up 4 saline syringes and 2 heparin syringes.

  • Get 6 3-ml syringes with blunt plastic cannula from the cardboard box on the drawers, a vial of sodium chloride from the top right drawer, and a vial of 10 USP heparin either from the top of that drawer set (if there is an opened one available there) or inside the top right drawer.
  • Wipe the tops of the vials w/an alcohol wipe (15s), then draw up 4 saline syringes (2 cc each) and 2 heparin syringes (2.5 cc each).

Disconnecting TPN/Omegaven from Max

  • Make sure no blood has backed down the tubing. If it has, clamp the tubing lines, and then periodically unclamp them. Repeat this procedure until the TPN/Omegaven has pushed the blood back into Max's broviac.
  • Clamp Max's broviac, and the two blue clip clamps on the Y-splitter.
  • Disconnect the Y-splitter from the blue connector. Don't let the blue connector touch anything. Remove the cap from the saline syringe w/your teeth, and attach the syringe to the blue connector.
  • Unclamp Max's broviac, and flush the syringe, using a pulsing motion.
  • Clamp Max's broviac.
  • Disconnect the syringe from the blue connector. Don't let the blue connector touch anything. Remove the cap from the heparin syringe with your teeth, and attach the syringe to the blue connector.
  • Unclamp Max's broviac, and flush the syringe, using a pulsing motion.
  • Clamp Max's broviac.
  • Remove the syringe together with the blue cap from Max's broviac. Scrub the broviac with an alcohol wipe for 15s, then stick the broviac end into the opened alcohol wipe packaging. Crimp the package around the broviac.
  • Remove the TPN, Omegaven, and tubing from the backpack and pumps. Save the white plastic hanger from the Omegaven bottle! Store it w/the unused Omegaven. Throw away the remaining used supplies.

G-Tube Dressings

(5min, as needed when wet, at least once per day)

If the gauze is damp but the aquacel has recently been replaced, then just replace the gauze. This describes the full replacement procedure.

Supplies

  • aquacel or sorbsan (alginate fiber wound packing), 1.5-2" length
  • ilex paste
  • mepilex transfer square with slit
  • split IV 2x2 gauze
  • kleenex

Remove existing dressings

  • remove gauze (break tape over split), mepilex
  • extract alginate fiber loop from around g-tube -- this can be tricky and the wood end of a q-tip or a toothpick is recommended to pull it out and then you can grab it with fingers.

Dry the area and remove old ilex

  • use kleenex to pat dry area, esp deep inner area around gt -- be very gentle and use patting motion, not rubbing!!
  • may need to pull up on gt (easiest to use silicone stopper thing pulled out and held) to keep pressure and prevent leaking. also angling it can sometimes work too.

Wrap alginate fiber around gt

  • for aquacel, twist the flat strip many times so it is more like a rope
  • for sorbsan, twist fibers to compact
  • wrap around under part of gt, trying to get it tight but this is hard -- try to hold the first end you apply and wrap around it to secure it. should wrap around 2-3 times or so.

Apply new ilex

  • get maybe 1/8" to 1/4" of ilex paste out of tube and on end of finger -- place into deep area around top of gt, being sure to push it down as deep as possible so it protects that delicate skin. The top area is typically in the worst shape.
  • get a smaller amount and place around bottom/sides.
  • if you have time, good to let this dry if you can.

Apply mepilex & gauze

  • place mepilex on top of the alginate fiber wrap (i.e., fiber wrap goes in deeper and mepilex sits on top just under wider top part of mic-key port)
  • make sure mepilex is snug around gt
  • apply gauze (2 pieces, contents of one package) on top of the mepilex -- this will push down the mepilex and fiber wrap deeper and there should be decent tension here so it will be very snug so be careful.
  • apply small plastic tape tabs to split part of gauze to keep it shut -- best to do one for each piece.

Ostomy Bag Change

As needed probably at least every 2 days (15 mins)

After prepping materials and starting a video for Max to watch, we:

  • Lay a warm wet washcloth over the stoma and surrounding skin for a couple minutes.
  • Gently pat off any residue from the skin.
  • Fan the area until very dry, keeping a tissue over the stoma to catch any output.
  • Press well to get a good seal, then hold a hand over the barrier for a minute to warm it.
  • Put a stretchy bandage around the torso to help hold the bag on. We use spandex bandages, after being warned that ace bandages have latex and might lead to allergies with prolonged exposure. Following AustinRath's suggestions below, Yuko's Mom sewed some velcro on the bandages -- makes things much easier. We cut a small hole in one end of the bandage -- as small as possible while still allowing you to get it around the flange. Loop the hole around the plastic flange (so it sits between the flange and the brown wafer).
  • Take a tissue folded in half 4 times, and tuck it between the spandex bandage and one side of the wafer. Repeat with a second tissue on the other side of the wafer. These tissues absorb moisture to extend wear time.
  • Fill the bag with cotton balls to soak up liquid and extend wear time. Clip the bag.
  • Cover the whole set-up with BandNet and a onesy to make it harder for grabby hands to get at it. (See also Securing lines.)

To empty the bag with cotton balls (following Abby Brogan's suggestions), we use manual peristaltic action and squeeze them out onto a ziploc baggie and weigh with a scale to determine output, 1 gram = 1cc. Super jumbo cotton balls seem to be the biggest size. Works great!

Mixing and managing formula

(15 mins, daily, usually ~6:30 pm)

  • 28 cal Elecare
  • plus just < 2 tsp inulin per day's mix
  • Fill a bottle with the mix for the next day's bollus feeds (currently 220 cc).
  • Pour the rest of the mix into the enteral bag. Cap the bag. Attach the g-tube to the end of the tubing. Turn the bag upside down, and press on the valve to allow the formula to flow through. Squeeze the bag, keeping it oriented so that the air goes out of it before the formula, and keep squeezing until the formula travels all along the tubing and out the g-tube. Clamp the g-tube.
  • Put an ice pack into the pump backpack.
  • Hang the bag in front of the ice pack. Put the valve into the pump. Replace the ice pack in the morning.

Current feeding rates:

  • 7 pm - 2 am: 28 cc/hr (w/pump turned off for 15 mins during his nighttime cares)
  • 2 am - 8 am: 28 cc/hr (w/pump turned off for 15 mins during his morning cares)
  • 8 am - 9 am, and during afternoon nap: 30 cc/hr. We were running this @37 cc/hr, which Max seemed to tolerate well, but we're experimenting now w/dropping the rate to see how it affects his system.
  • Otherwise, bollus feeds by mouth once per hour: 30 cc/hr

We try to gradually increase these rates as Max tolerates. Typically, we up one of the pump rates at a time, by 1 cc/hr. Max will usually show some signs that this change is pushing his system, through increased output (more than the increase in input), small spit-ups, or leaking around his g-tube mic-key. Then he will adapt over the next few days, so that we can try another increase.

Increases in the bollus feeds seem to be harder for him to adapt to, with him showing much larger increases in outputs.

We try to keep his outputs at or less than 50 cc/kg/day. In his good window, his outputs are typically not much more than his inputs.

Mixing TPN

(15 mins, daily)

Preparation and general tips

  • wipe area with lysol wipe
  • wash hands with soap and water, then alcohol soap and frequent re-alcoholing
  • don't talk or breathe on exposed needles, vial tops etc

Supplies

  • syringe packet from covered drawer
  • 1000 USP heparin and l-cystine (?) from top drawer ziploc
  • vitamins and carnetine syringes from fridge
  • TPN bag (should be taken out at 3pm each day to warm up)!

Basic procedure

The overall steps are relatively simple and outlined here:

  • sterilize rubber tops of vials prior to accessing them (15sec alcohol rub)
  • inject needle and extract proper amount of fluid from each vial
  • push out any air and re-cap needle
  • sterilize injection port on TPN bag
  • inject fluids into bag, starting with smallest quantity first (so that it gets pushed through and larger quantity doesn't matter if some gets stuck in injector tube)

Sterilize tops

  • use one alcohol wipe for l-cystine's and another for heparin and vitamins

Extract fluids

  • remove cap and set aside for subsequent re-capping
  • pull 1/2 of total vol of air into syringe, then pierce rubber top with bottle still sitting on table
  • invert bottle, push air out while needle is above the fluid level if possible (minimizes air bubbles)
  • now make sure needle tip is always in the fluid, and draw back required amount plus some extra to allow for lossage while removing air bubbles.
  • place bottle back on table with needle still inside, and extract needle.
  • with needle-end up, thwack syringe as needed to remove air bubbles
  • push out air until just one drop of fluid comes out
  • re-cap needle and set aside for subsequent injection

Inject fluids

  • always start with smallest quantity and go progressively larger
  • clean injection port thoroughly with 15sec alcohol rub (tough to get good friction on this guy -- can fold over alc pad or...?)
  • place TPN bag label-side down (better access)
  • hold syringe near needle-end for greater stability while injecting
  • put needle all the way in port
  • be sure not to nick port edges!

Connecting TPN Tubing

(15 mins, daily, usually ~6:30 pm)

Clean Hands and Get Supplies

Supplies
Supplies
  • Clean hands with soap and warm water, and clean table surface with Lysol wipe. Use hand sanitizer as needed throughout.
  • Omegaven (50 cc)
  • TPN bag
  • saline syringe (2cc -- 2.5cc is heparin)
  • TPN tubing (white filter)
  • TPN extension tubing (long with green inner bag)
  • Omegaven tubing (blue filter)
  • Omegaven spike (wide white bag with one clear side)
  • Y-connector
  • 3 blue connectors

Connect TPN tubing to extension tubing

  • Open TPN tubing bag (white filter) -- all ends are well covered so no risks
  • Break the TPN tubing "mickey mouse ear" off (clear yellowish tab)
  • Open TPN extension outer bag -- outer clear bag is risk-free, inner green bag with preforation on one end requires care -- the end of the tubing with the red cap does not fully protect around the outer threads so you don't want that to touch anything nonsterile.
  • Pull off top of green inner bag at perforation, with red cap end sticking out
  • Carefully pull off red cap
  • Pull off blue cap from end of TPN tubing and screw onto extension cord

Connect blue connector to TPN extension tubing

  • Pull off white cap from extension tubing, screw onto blue connector end (both ends must remain sterile!!)

Connect Omegaven tubing to blue connector

  • Open Omegaven tubing bag (blue filter) -- all ends are well covered so no risks
  • Break the TPN tubing "mickey mouse ear" off (clear yellowish tab)
  • Pull off blue cap from Omegaven tubing, screw onto blue connector end (both ends must remain sterile!!)

Connect Y connector to TPN and Omegaven blue connectors

  • The Y connector bag is very risky -- must be very careful not to let buff-cap ends of Y connector touch anything. Other end is well capped.
  • Open end of bag with single capped tube end up and buff-caps dangling down, and screw in cap as it is often loose and may fall off otherwise.
  • Grasp in middle of the two Y's as you pull out of bag (buff caps still down) then rotate up and adjust grip to base of one of two caps.
  • Pull off white cap from end of one blue connector (with teeth) and screw onto buff cap, being careful not to touch other cap.
  • Repeat with other connector and cap.
  • Store the top of the Y-connector in a blue-connector wrapper.
  • Tighten all the connections along the Y connector, especially the buff caps at end of each Y (these come with connector but are often loose).

Attach saline syringe to remaining blue connector

  • Saline is 2cc filled -- heparin is 2.5cc
  • Push plunger slightly (<.1cc) to prime into blue connector (will just go into white plastic cap)
    • Replace in syringe wrapper.

Connect Omegaven spike

  • Open the Omegaven spike bag -- well covered by caps so no risks
  • Locate other end of Omegaven tubing (larger blue filter -- make sure it is not the TPN!)
  • Pull of small cap from clear plastic end of spike with hand
  • Pull of cap from Omegaven tubing with teeth
  • Insert tubing end into plastic housing on spike

Insert Omegaven spike into Omegaven bottle

  • Pull off clear cap from Omegaven bottle and scrub well the Omegaven lid with an alcohol wipe for 15 seconds.
  • Pull off cap from spike with teeth and insert spike into bottle. Takes a considerable amount of force to penetrate rubber top.

Insert TPN tubing spike into TPN bag

Everything Connected
Everything Connected
  • Get a good firm grip on the middle tube on TPN bag with left hand -- need to tuck one or both of the other tubes under the bag so they don't touch it.
  • Pull off clear plastic tab at end of that tube.
  • Pull off cap on end of TPN tubing spike with teeth.
  • Insert into middle tube on TPN bag -- requires considerable force. Be sure to make it as straight as possible. First hardest part is breaking the membrane -- should be easier after that but can still be difficult to get all the way in.

Tape the connections and Omegaven hanger

Taping
Taping
  • Use silk tape to tape one side of the Y-connector through all 3 junctions (see picture)
  • Rip off about 2.5" of tape
  • Aligning the edge of the tape with the angle of the base of the buff cap gives a good angle to spiral the tape up the rest of the connections.
  • Repeat for other side.
  • Use plastic tape to form a hook on the bottom of the Omegaven bottle (see picture)
  • Tape should be 4-5" long -- fold in half in middle portion, allowing .75" or so open flat on either end to tape to the base of the bottle.

Hang the TPN and Omegaven on the pole, and prime the tubing

  • Prime the Omegaven first -- need to grab Omegaven bottle with left hand while holding open the yellow pump clamp with other hand, and shake bottle vertically to get initial flow -- once it is flowing then re-hang on pole.
  • Watch for air pocket that sometimes forms just past the blue clip thing that hooks into the pump -- if you see it, hold tubing taught at yellow pump clip and thwack with finger.
  • Hold Y connector with capped end vertical at top (Y's hanging down) and stop priming when Omegaven just crosses where the Y's join.
  • Use blue clip clamp on Y-connector to clamp Omegaven line.
  • Now prime TPN in similar fashion -- no need to shake to get started, and it goes all the way to the end of the Y connector -- look at threads to see when it has spilled out into cap.
  • Use blue clip clamp on Y-connector to clamp TPN line too.
  • Temporarily take off blue cap bag from end of Y connector and shake extra fluid from end of Y connector into trash bin, then replace blue cap bag.

Hang the TPN and Omegaven in the backpack and connect to pumps

  • Run the TPN tubing into the left pump, the Omegaven tubing into the right pump.
  • First insert blue clip into right side of pump top, making sure tubing comes around from the front side of the pump (not the back).
  • Stretch over top of pump and insert yellow clip into receptacle and clamp top metal lock down.

Connect to Max

  • Remove the alcohol wrapper on the end of his broviac.
  • Scrub the broviac with an alcohol wipe for 15+ seconds -- scrubbing end of cap and threads very thoroughly.
  • Attach saline flush (use teeth to pull of white cap from blue connector, screw onto buff cap)
  • Flush with saline, using gentle pulsating to flush contents of buff cap (big white clamp on broviac is opened for flush and then closed after!)
  • remove small white cap from end of Y connector (requires turning motion, so do this with hand before re-grasping his broviac)
  • Unscrew just the syringe from the blue connector (which stays on Max's broviac buff cap), and screw Y connector onto blue connector. Make sure it is tight.
  • Unclamp the large white broviac clamp and the two blue clip clamps on Y connectors

Start pumps

  • Hit blue On buttons on left
  • After self-check, hit yellow Yes if it says REPEAT-RX or down-arrow to that selection if it says RESUME and then hit Yes (this requires additional confirmation)
  • For TPN, it is 2 Yes presses (REPEAT-RX, TPN), and then it reviews all the settings.
  • For Omegaven, it is 3 Yes presses (REPEAT-RX, CONTINUOUS, ?)
  • Then press Run!

Hang and Power Pumps in Max's Room

  • Hang the TPN bag over both hooks.
  • Plug in the TPN and omegaven pumps with the blue power plugs -- they go in the middle bottom of the pumps, with an angle of curved cable on the power plugs at 8 o'clock, where 6 o'clock would be with the curve pointing out toward you -- pump display will light up when properly plugged in.
  • Loop the TPN tubing over the hook closest to the crib to prevent air-in-line alarms.
  • Hang the enteral pump on top on the single hook closest to the crib. Make sure the TPN tubing is loose behind the enternal pump, not crimped underneath it.
  • Plug in the enteral pump, so that the power cable sits below (rather than crossing over) the tubes connecting to Max: push plug in all the way so that pump display light is on.
  • When starting the enteral pump, it is important to write down the total pumped for the day in the notebook (and then clear that), along with the total he drank from the bottle (out of 220cc) -- to get the pump total and clear it, push vol/tot and clear twice in sequence -- the 2nd (larger) number is the overall total to be written down in book.
  • The rate will also typically be different from the daytime rate, so you'll need to change that.

Replace Omegaven bottle

  • 3.5 hours after starting the small Omegaven bottle, it should be swapped for a large Omegaven bottle. The pump should indicate that 30-40 cc of Omegaven have been delivered.
  • Stop the pump.
  • Affix white plastic hanger to a large Omegaven bottle. Pull off clear cap from Omegaven bottle and scrub well the Omegaven lid with an alcohol wipe for 15 seconds.
  • Remove the spike from the small bottle and insert it into the large bottle.
  • Restart the pump.

Common pump errors

  • down occlusion: tubes crimped in PJ's?
  • air in line: thwack line, make sure TPN hung over hook

Broviac cap change

(10 mins, weekly, usually Sunday night prior to hookup)

Preparation and general tips

  • this requires utmost sterility -- no talking or breathing on open parts
  • wash hands with soap and water and alcohol soap frequently

Supplies

  • buff cap (in ziploc in top front of non-covered drawer)
  • saline syringe (2cc) with blue cap attached (as per the TPN hookup instructions)
  • tegaderm (same ziploc)
  • scissors to cut tegaderm
  • alcohol wipes (at least 4 -- have more avail) -- rip the tops off just prior to starting so they're easy to get.

Cut the tegaderm

  • use 1/2 of squared-off tegaderm -- cut off angled edge parts, and cut remaining square in half, use one half per time.
  • pull up a bit on one end to get it started so that is quick during procedure

Prep the saline syringe with buff-cap

  • unwrap top of buff cap packaging, but keep the buff cap in the package. Hold the buff-cap through the package at the base (be careful -- it can squirt out of packaging if you don't hold it right -- if that happens, just get a new one)
  • screw into blue connector (remove blue connector cap with teeth)
  • prime saline into blue cap on stem of buff cap (can see fluid against light -- best not to go to end b/c you will be removing this with teeth)
  • place back in buffcap packaging

Remove existing tegaderm

  • hard to find end of tegaderm but often it is a bit soiled and you can see that.
  • just unwrap it off.

Clean prior to removing old cap

  • squeeze one alcohol wipe worth of alcohol into threads of existing buff cap, to prevent anything bad from getting in there during other cleaning
  • use another alcohol wipe to clean thoroughly around exposed base of broviac below buff cap (15s)

Unscrew old buff cap and clean broviac

  • it can be on pretty tight..
  • just prior to removing it, grab an alcohol wipe
  • as soon as you remove it, place alcohol wipe over exposed broviac and start scrubbing
  • scrub around threads and top end of broviac -- go for at least 1 min

Screw new buff-cap on

  • keep alcohol wipe on end of broviac until ready to screw new one on
  • remove saline syringe + buff cap from package
  • pull off small blue cap with teeth (be very careful to keep your lips away from the buff cap -- works best if you kind of grimace to keep your lips away from your teeth -- practice removing the small blue cap in the mirror to ensure you've got it right)
  • remove alcohol wipe and screw cap on
  • make it decently tight but not too tight..

Apply alcohol to threads and tegaderm

  • get another alcohol pad and squeeze out alcohol onto threads
  • let base below threads dry a bit (15s)
  • then wrap tegaderm around so that it is 1/2 on buff cap and 1/2 on base of broviac.
  • it is stretchy so pull a bit to make a snug fit -- this will also narrow it slightly to make it fit better width-wise.

Do Saline flush etc

  • flush the saline and proceed with hookup! all done!

Broviac dressing change

(15 mins, every 5 days after bath)

This procedure must be kept as sterile as possible to reduce risk of infection, and Max must be kept as still as possible to reduce contamination and risk of pulling/kicking out the line.

Avoid talking, or turn your head away from the site if you must talk. Wear a face mask if you are sick.

Max will generally lay pretty still through the procedure, but you need to be ready for the moments when he is not. This works best with one person holding his legs still, and a second person keeping his hands busy and away from his legs, while the third person does the broviac change. In a pinch, one helper can stabilize Max's left hand and right leg, blocking his right hand, while the dressing change person stabilizes his left leg.

Supplies

  • Wash hands thoroughly and use alcohol soap and have that avail for procedure -- reapply after each step basically.
  • IV3000 dressing (orange & white packaging)
  • IV split gauze 2x2 (same as used for his g-tube site)
  • white paper tape
  • bactroban antibiotic
  • chloroprep wand (can open packaging on one wand; have another avail but unopened just in case)
  • safety scissors (white plastic handle, round tips)
  • bandnet to cover when done

Prep the IV3000 dressing w/ IV Gauze

  • Opening up the IV3000 dressing packaging
  • Taking one of the 2 IV split 2x2 gauze guys out of a package and affix it to one side of the IV3000 dressing
    • peel back dressing from backing, place gauze, put back on backing
    • the end of the gauze (the part you are holding -- be sure to just touch one edge!) should line up with the end of the orange tape on the side of the dressing -- not a big deal if it is a bit off one way or the other.

Get Max Ready

  • Lay Max down, watching a video, with small toys to keep his hands occupied.

Remove Old Dressing

  • Be sure to observe current dressing to get image of what it should look like, including tension loops, taping, gauze placement.
  • Cut both bands of white paper tape that go around his leg, using safety scissors (round tips) and peel that off
  • obviously be extremely careful not to cut the broviac! shouldn't be anywhere near it -- cut along back/outer region of leg
  • then peel off the tape that goes around the broviac port end -- best to try to undo order that it is done in (see below).

Chloraprep the site

  • always move from the broviac site out, both in terms of individual strokes and overall area that you are washing.
  • be sure to get any dried crud out of the site completely using wand
  • clean around the skin in the area covered by the dressing
  • then clean the line, being sure to rotate the line to get all sides, moving from the site up the line all the way to the base of the thicker part where the clamp is -- go 1/2" up that thicker part.
  • Wait 1 minute (or possibly a bit longer depending on how wet it is from chloroprep) for the chloraprep to dry. Do not fan the site, because this can spread bacteria to it.

Apply a little bit of antibiotic directly on the site

  • just a dab that covers the site (see photo).

Apply the IV3000 dressing

Safety Loops
Safety Loops
  • Form the line into 2 tension loops (see photo), which will keep any tugging on the line from pulling directly on the insertion site. The first big one loops down his thigh (down = toward inner) and then back up (toward front/dorsal thigh) to the top of his thigh where the smaller one should be made just below thick part of the broviac. Be sure to look at this prior to removing old dressing.
  • it is critical to have the holder hold his leg very still (may take considerable force) during this part.
  • Pull side of IV3000 dressing with gauze attached from backing and place on the lower/inner thigh portion of the broviac, with broviac entry site centered and just above the edge of the gauze. This part should cover the bottom of the large safety loop.
Dressing application
Dressing application
  • Then peel backing off while placing dressing down as you go up to the thick part of the broviac tubing. The orange tape should just wrap the bottom of the thick part, with the small safety loop under the dressing.
  • This is the trickiest step, because the dressing tends to fold over onto itself and the tension loops are hard to keep in place. Hold the dressing taut by the ends.
  • Remove the backing for both of the orange tape sections and place down. You may need to fold the tape under the gauze if the alignment is not perfect. this is not a problem.

Apply Paper Tape

First Tape Loop
First Tape Loop
  • Start with the top edge with the thick broviac port on it.
  • First step is to wrap a piece of tape around broviac very tightly to provide primary securing of the line.
    • Place a piece of tape (roughly 4" long) under the thick part, at an angle relative to the line (maybe 30 degree angle or so) and then wrap around and pull tight (but not too tight!) so that the sticky parts are now facing down
    • place those on top of the orange tape/skin edge -- the tape should extend roughly 1/2" beyond the edge of the dressing on either side.
  • Then put another piece under the broviac, overlapping partially with the first piece (toward the "top" edge more) -- pinch it up around broviac part.
  • Then put another piece over the broviac, pinching it around the thick part so it is tight.
  • Then another under piece in the same manner as before.
  • Then finish with another over piece.
  • Then wrap tape around leg along clear edges of dressing -- two loops -- be sure to compress his leg during this process so the tape is not too tight -- should just fit not tightly around the fully compressed leg. Will thus be looser when leg is not compressed.

Cover with Bandnet

and you're done!!

Bath

(15 mins, every 5 days)

Food and Allergies

  • Max drinks ~30cc of elecare formula (28kcal per oz strength) per hour, typically one bolus per hour in a cup.
  • He can eat up to 30cc or so of food 2-3x per day as well, though he ususally won't have that much unless it is drinkable puree (babyfood).
  • He can have water: we're experimenting with letting him have more, roughly 10-20cc per hour or so -- good to have it last so using a toothbrush or wet rag.

Allergic Foods to Avoid

  • Major allergies: milk, eggs, nuts, peas
  • Minor: soy, banana, avocado

Detailed Allergy Test Results

Note: this is not up to date but still useful guide:

Class IgE Skin Test Actual Reaction Item
0 <.35  ? no Pork
0 <.35  ?  ? Lettuce
0 <.35  ? no-ace bandage Latex
0 <.35 0  ? Crustacean Mix
0 <.35 0  ? Tuna
1 0.60  ? no Beef
1 0.60  ?  ? Green Bean
2 0.80  ? no Chicken Meat
2 0.93  ?  ? Corn
2 1.98 0  ? Soy
2 2.29  ? no Banana
2 3.12  ? no Oat Food
3 3.51  ?  ? maybe Sweet potato
3 3.53 0  ? Wheat
3 4.36  ?  ? maybe Strawberry
3 7.10  ? no Rice
3 8.65  ?  ? Egg Yolk
4 19.8 0  ? Peanut
4 35.6  ?  ? Almond
5 66.9 30/21  ? probably Egg White
5 73.3  ? YES-flushing Pea
5 76.5 38/20  ? probably Milk

Things to Test

Soy margarine

Lab Draws

(15 min, every 3 weeks)

Call the courier

  • Dynamix couriers: 303-367-3567, then 1, give acct no
  • Mention stat labs to Children's Denver in Aurora

Supplies

  • 3 10cc syringes
  • 1 blue connector
  • 1 heparin vial
  • 2 saline vials
  • vial filler thing
  • sample vials (blue, gold, purple, maybe green)
  • if doing #Broviac cap change then all those supplies too

Draw up flushes and prep

  • 3cc saline -- attach blue connector for initial flush and waste draw
  • 10cc saline -- for post-draw big flush
  • 2.5cc heparin -- hep lock: if doing cap change, attach blue connector and buff cap

Do the draw

  • alc wipe broviac
  • attach 3cc saline and flush in (pulsing), then draw back 3cc waste
  • clamp, remove just syringe, leaving blue cap, discard syringe in sharps (no waste return -- not worth extra risk given how infrequent it happens)
  • attach vial filler guy to blue connector (screws on just like syringe)
  • insert draw vials into filler one at a time, filling until they just stop (typically 1" of air left at top)
  • clamp (optional) then remove vial and rock vial 4-5 times post-draw
  • order: blue, gold, purple, green (green is optional extra test)

Post flush

  • unscrew vial filler and discard in sharps
  • attach 10cc flush and pulsate flush
  • do final hep flush, and transition into #Broviac cap change if doing that.

Label and refrigerate the vials

  • Name, birthdate, date and time of draw
  • put in through top compartment of sample ziploc bag (lab sheet goes in flap on back)
  • put bag in fridge

Fill out the lab sheet

  • check STAT, TCH physician is Soden, Jason, fill in name, include MRN
  • FAX results to: 720-777-7277
  • TPN Labs: CBC, CMP (comp metabolic), Mag, Phos, Triglycerides
  • CRP, Hepatic Function Panel (HFP)
  • Bilirubin Direct (BILD)
  • sometimes: PT, PT with INR, PTT
  • Other: essential fatty acid
  • fold into quarters and put in back flap of lab sample bag
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