A Day With Moo

Happy 4th of July! 

This is definately a LONG read.  A bathroom read, a waiting on the doctor read, don't have anything else to do for the next 30 minutes or more read.....
In this entry, I explain as best I can, everything involved in a day with Maci.  I am sure I have left some things out but this will perhaps give you a "general" idea of what things are like around the "McCarrens Domestic Engineering Group".  

Around 9:30ish, Maci wakes up.  I go into her bedroom and talk to her while I prepare to unhook her from her machine and get her out of bed. 

Her dialysis catheter has to soak in iodine for 5 minutes so I get the sterile 3X3 gauze and the iodine pad, place it like I was trained and wrap it around her catheter connection to the tubing to the machine.  I set my stopwatch on my phone so I am sure 5 minutes has passed before I unhook her. 

While I am waiting the 5 minutes, I change Maci’s diaper, weigh the diaper I took off and record the weight (because we keep up with her output to be sure it remains the same and doesn’t change or she doesn’t get dehydrated.  If she has a lower drain volume one night but had a high output of urine, we also have her diaper weights to indicate that for documentation purposes.)  I take her temperature and record it on her dialysis flow sheet.  I turn off her apnea monitor and remove the leads and “belt” that holds them in place over night.  I make sure the air vent in her bedroom is closed and the bedroom door is closed.  (This is to decrease contamination and put Maci at risk for Peritonitis).  I get out an end cap for capping off the catheter and then I put on a mask for hand washing.  I either wash my hands for 3 minutes with Dial soap (rated the best antibacterial soap to get at retail locations, with Lever 2000 being the 2^nd best) or use alcohol foam for 1 minute.  I use a timer in the bathroom for soap hand washing and use my phone/stop watch for alcohol foam washing.  Once hand washing is done, 5 minutes has typically long passed and I am ready to unhook Maci from the dialysis machine.  I put on gloves, not touching anything except the glove box/gloves after hand wash, I put a mask on Maci, covering her nose and mouth and unwrap the catheter that has been soaking.  I open the end cap, check to make sure it has a betadine sponge inside it (it keeps things sterile inside the cap and at the opening of the catheter).  I remove the connection to the machine at the end of the catheter and screw on the end cap.  I remove Maci’s mask (sometimes she’s been fussing for having her face covered and sometimes not.), I remove my mask, gloves and throw away the trash (iodine pad, gauze, paper and package the end cap was in).  I take off Maci’s pajamas, unhook her feeding tube from her feeding pump and weigh her and write down her weight on her dialysis flow sheet.   I put her back in her bed, hook her feeding tube back up if she hasn’t finished feeding and wipe off her face because often she has spit up or gotten sick since waking up.  In the times she does get sick (which is most mornings) I have to stop what I am doing and turn her to her side so she doesn’t swallow what comes up.  Then I have to wipe off her face, neck, sometimes clean out her her….and go back to my “routine”.  If her feeding is finished (it usually is), I take off her extension so it can be washed out and reattached when it’s time for her to eat again.  Now, I check her dialysis drain bag.  I have to make sure it’s clear, not cloudy and there are no signs of things indicating infection or a problem with her peritoneum.  I turn off her dialysis machine. 

I pick up Maci, take the blanket and/or burp cloths out of her bed that may (or may not) have vomit on them, throw them in the dirty clothes and replace with clean ones and it’s now time to get her ready for a bath.  While I am still in Maci’s room, I get out the things I need to redress her catheter site.  3X3 sterile gauze, sterile swab, gentamicin (antibacterial ointment) and two sterile adhesive bandages (called op site or I will use one op site and one tegaderm). 

I take Maci to the den and put her on her play mat while I get her medications ready.  I go to the kitchen and draw up the following:  (1) Ferrous Sulfate (Iron) 1.1 mL, (2) Zantac 1 mL, (3) Nephronex (kidney vitamin) 0.5 mL, (4) Ergocalciferol (Vitamin D) 0.15 mL, (5) Levothyroxine (Synthroid for her thyroid) 25 mcg pill dissolved in 5 mL of water, (6) Amlodipine (blood pressure) 0.6 mL, (7) Calcitriol (also a Vitamin D) 0.04 mL, (8) Potassium Chloride 5 mL (9) Mylecon (gas) .23 mL and today as I type this she is weaning off her original blood pressure med that she will get for several more days, making med #10…(10) Isradipine (blood pressure) 0.22 mL.  I take meds 1, 2, 6, 9 & 10 and put them in her g-tube and then flush it with water to make sure it all gets into her belly!  Her #8, potassium is later mixed in with her formula for her first feeding of the day.  I listed the amount of each med because it is precise.  Too much or too little could result in anything from bad labs to a trip to the hospital. 

Now I go clean.  I first wash out all of the syringes I used for Maci’s meds and put them back where they are stored.  I clean the kitchen sink with antibacterial soap and then I spray with alcohol and let it sit to continue to sanitize even more.  I clean and spray the faucet, the sprayer, the sprayer hose and the counter next to the sink where I place a paper towel.  I go get a towel and two wash cloths and put them on top of the paper towel.  I also fold Maci’s towels and wash cloths inside out so the side that touches her, while not being used, has not been exposed to things blowing around in the air.  Now, once Maci is ready, I rinse her hair, wash it (she loves having her hair washed) and wash with my hands under her neck; that area under the neck where she makes cheese…LOL.  I rinse her hair and neck and soap up wash cloth #1 and bathe her and rinse her.  I then remove the dressing from over her dialysis catheter, take wash cloth #2 and put Dial soap on it and wash her catheter area, in a circular motion, not overlapping any previously washed area so not to contaminate an area that I have washed already.  I rinse off the soap and wrap her in her towel and head to her room.        

I put Maci in her in her bed and open the sterile swab and put the gentamicin ointment on it and open the sterile 3X3 gauze.  I make sure the catheter area is dry, put the antibacterial ointment around the tube and place the quarter, folded 3X3 gauze over the area of the catheter coming from her belly.  When I fold the guaze, I am careful not to touch the side facing down, still touching the inside of the wrapper, keeping it sterile because this is the side that will touch Maci and the catheter exit site.  I open the op site, adhesive bandage and put it over the gauze.  I then put another op site bandage or tegaderm on top of it to be sure the catheter area is covered well and secure.  I put Maci’s diaper on, put lotion on her (she loves her massages), secure her catheter to her using a mesh wrap that wraps around her chest and I get her dressed. 

Maci will play for a while, about 30-45 minutes and then she is ready for a nap.  Yes, a nap, usually less than an hour after she has gotten up from sleeping all night.  She is a short napper, usually about 20-30 minutes.  People have said “you nap when she naps”.  Well, who can even get comfortable in this amount of time??  I can’t nap when she does….oh and did I fail to mention you have to hold her for her to nap?  There have been a few rare occasions where she has fallen asleep on her play mat and one of those times in her Bumbo seat.  I guess pure exhaustion won that battle. 

After a nap, depending on the day, we play, run errands, pay bills, go to doctor visits, etc.  When Maci sits in her seat, exersaucer or plays on her play mat is when I do my best to get laundry done, dishes washed, loaded, unloaded, rugs vacuumed, floors swept and mopped and bathrooms cleaned.  It seems like it’s a never ending process because I can never start and finish it all in one day.  Depending on the day or mail I have received, during play time is when I make phone calls to order supplies, refill meds, call about meds not covered by insurance, follow up on doctor visits/lab results, follow up on private duty nursing care and the several other "irons in the fire".  We also play dress up and Maci poses for pictures and she gets mani/pedis.  Her nails grow faster than mine and have to be cut on a weekly basis.  Some days she gets a trim, some days she gets her toenails painted.  On Mondays at 11:30 am Occupational Therapist comes to the house for her therapy.  On Wednesdays at 2 she has a Special Instructor come to work with her (similiar to a Physical Therapist).  Other days, we do our “homework” on our own. 

At noon every day, is Maci’s first feeding of the day since her overnight continuous feeding.  I take the bag from her overnight feeding down and throw it away and get a new bag, hang it, load the feeding machine and warm her milk.  Yep, we warm her milk…enough to knock the chill off.  Even though it is going directly into her belly and she isn’t swallowing it, what baby wants ice cold milk directly in their belly?  Not mine.  I pour the warmed milk into the bag and prime the line.  (That’s running the milk through to the end of the tubing so you aren’t pushing air into the belly which is a recipe for an automatic stomach ache. )  I set the machine on the amount of milk to deliver and the rate to deliver it, hook it up to Maci’s g-tube extension, add her potassium med and run the milk.  She eats for 2 hours and then gets an hour break.  The feeding machine beeps when her feeding is over.  I unhook her, and either flush her tube with water, pushing the milk in the tube into her belly to prevent it from just sitting in the tube until the next feeding. 

If we are at home, I will remove her tube after each feeding, wash it and reattach.  Maci gets an hour break from feeding and then we start the process over again.  Feed from 12-2, break 2-3.  Feed 3-5, break 5-6.  Feed 6-8, break until 9:30.  Feed continuously from 9:30 pm until 9:30 the following morning.   

At 3pm Maci gets meds 3, 4, 5, 7 & 9.  She used to get them all in the morning but with her vomiting we tried to see if it helped at all by giving her once a day meds a few hours after her twice a day meds. 

Around 8pm it’s time to start getting things ready for dialysis.  Wash hands with mask and then set up the machine.  Remove the cassette and tubing from the night before, power on the machine, verify the programming and enter Maci’s weight, go through a few more steps and insert a new cassette when the machine says to insert the new cassette.  I have to be sure that none of the tube ends come unfastened and fall and touch anything.  If they do, you start over with a new cassette.  (The cassette* is explained at the end of this entry.)  I close all of the clamps to every tube, push go and the machine does a system test (takes a couple of minutes) and then the machine will tell you it’s ready to open clamps and connect the bag (the bag is the dialysate fluid used for cleaning the toxins that Maci’s kidneys do not clean).  Use hand sanitizer, mask up, glove up and get ready to connect the bag to one of the tubes attached to the cassette.  Attach the bag, unclamp the tube attached to dialysate bag and the tune that connects to Maci, hit go and the machine begins to prime (runs fluid through the tubes) and this takes about 10-15 minutes.  While the machine is priming, I get Maci ready for bed.  I get her pajamas ready, undress her, change her diaper, remove her mesh wrap and wrap the end of her catheter in iodine and gauze to leave on for 5 minutes (looking at the time to be sure 5 minutes or more pass before removing).  I put on her leads (left and right) for her apnea monitor and wrap and velcro the band that holds them in place and put Maci in her pj’s.  Time for masking up and handwash again; 1 minute alcohol foam or 3 minute Dial soap.  Gloves on, get tube that connects to Maci (not letting anything touch the end), mask on Maci and unwrap the end of the catheter, pull cap off end of tubing, be sure it primed by making sure it drips water by shaking it downward, unscrew end cap from catheter and connect tube.  Move Maci’s mask, your mask, take off gloves and push GO on the machine.  Dialysis has begun. 

The machine will usually alarm “low drain” on Maci’s initial drain.  To continue, she must drain 15 mLs of the 100 mLs left in her from the last fill of the morning.   Most of the time she absorbs most of the 100 mLs and you have to bypass the initial drain once it alarms the third time.  Sometimes the machine will alarm during the night, sometimes throughout the night and occasionally, not at all.  It emits a loud beep that I can hear but it’s even louder because of the baby monitor.  

Maci usually falls asleep, being held at 9:30 or 10:00.  Although, don’t dare try to put her in her bed before 11:20 / 11:30.  If you do, she always wakes up and cries.  Giving her back her pacifier works for ohhhhh, 10 seconds but it is inevitable that you will have to pick her up again and hold her until, 11:20 / 11:30.  It’s like she knows what time it is!  During our huggle time (huggle = hold, hug and snuggle) is when I read or facebook on my phone. 

I usually get in bed about midnight and sometimes get 2-4 consecutive hours of sleep before either the machine alarms and wakes me or I will wake up hearing Maci making noises.  The remaining hours of sleep are off and on.  Sometimes around 4/4:30 Maci will wake up with a belly ache, other times it’s not until 6:30ish.  It usually requires holding her, patting her back and helping her pass the gas.  Sometimes you can put her back in the bed when she falls back to sleep but sometimes she is restless and she and I are in the recliner in her room until she wakes up for the day at 9:30 / 10:00 am. 

Then it’s time to start another day with Moo!            

*Cassette and tubing – The various tubes used to perform APD (Automated Peritoneal Dialysis) are gathered into one area of the cycler that keeps everything organized called the cassette or organizer. There are tubes that lead from the cassette to each dialysis solution bag (there can be from one to four bags used for each treatment depending on the patient’s prescription). The PD catheter is attached to a tube on the cassette as well. There is another tube that attaches from the cassette to the drain bag or drain line.

The APD machine is programmed to drain the solution through the PD catheter to the drain tube (or drain line). Once the draining is finished, new dialysis solution is released from a dialysis solution bag to the peritoneal catheter that leads to the peritoneal cavity where the solution will dwell for a certain time based on the patient's prescription. This process will repeat until the APD treatment is completed for the night.  (Taken from http://www.davita.com/treatment-options/home-peritoneal-dialysis/what-is-peritoneal-disease-/tour-of-automated-peritoneal-dialysis-(apd)-machines/t/5486).