typical Friday

Typical around here is pretty much atypical for anyone else, but our typical has changed over the last two months - and for the better!

Friday - pretransplant:
Turn off feeds at 5am regardless if Matthew finished or not. Wake up again at 6am to get self ready, pack diaper bag and give baby a mini-bath from the 1- 3 puking sessions overnight. Throw the crib linens in the washer as I run out the door at 6:45am. Take two hours to drive 64 miles, add and extra hour if it is raining. (WARNING - metro Atlanta drivers forget basic driving 101 if any precipitation is within 50 miles of the city, they also forget when the sun is in the sky, when someone is changing a tire on the side of the road, the wind blows or it is dark outside)


Pull into Egleston parking garage around 8:45am. Change Matthew's puke clothes, hoping it is just on the bib...dangit! (Yeah, God DOES have a sense of humor - He thought it would be fun to give Matthew motion sickness like his daddy on top of the all the pukiness from kidney disease - I'm not smiling...) Say hi to all of our "people" at the hospital (security, environmental services and food services). Wave to fishies in the aquarium. Head up to 6th floor. Quick hi to Parrish at registration and get access badge permission to head back to hemo unit. Sign in and wave to our friends on first shift. (this is when we would get Activase injections for clots if necessary - which it was - a LOT!)
Head to family bathroom to change diaper and give medicines (all four blood pressure meds, sodium supplement, iron supplement, vitamin D supplement, reflux med, calcium supplement and tylenol for cramping, and yes - those were just his morning meds). Head across the hall to family kitchen. Turn on Disney channel (LOVED when they put a tv in there last summer!!). Warm up Matthew's bottle of decanted kidney friendly formula. (was decanted the night before for two hours from 10:30 pm to 12:30am, just in time for the 1am feed change) Say hi and wave to all of friendly nurses, techs, liver docs (they did rounds at 9am and always came in for coffee prior), social workers and child life specialists. Bolus feed of 60 ccs over an hours.
Someone from dialysis comes in around 10am to get us for our session. Head on back with a baby ready for his first nap of the day. Get undressed and weighed, (Matthew not me) take temp and get blood pressure. Laugh at how crazy high blood pressure is and shrug it off. Set UF goal for 1000, knowing he will start to cramp at 850 and only allow them to go to 900. Put on mask and sanitize hands with cleaning foam. Hold Matthew's attention for hook up and labs. Matthew tries his hardest to get every syringe he can to "help" the nurse. Keep sterile field away from his feet - it won't be sterile much longer... Set machine to dialyize. HOPE and PRAY it works. Begin three hour countdown of worry.


Roll Matthew onto his tummy and coerce him to take a much needed nap. Sigh as alarms beep, 9 year olds play xbox with volume set at 100 and nurses laugh and call to each other from across the unit. Matthew is out. Wait until the next blood pressure comes to make sure all is alright and he is not bottoming out or getting too high. OK, I have 15 minutes to pee and eat before it is time for the next blood pressure measurement. RUN! POTTY! SWALLOW! RUN! Next blood pressure squeezes comes around...and wakes up Matthew. YAY, a 20 minute nap. :) Get the gamecube tv from one of the techs. Put in a movie for Matthew.

At noon, heat up bottle of 60 cc's. Give another dose of blood pressure meds and anti-nausea medicine. Nurses administer Aranesp (yes, human plasma from the blood - NOT to be used in those that have congestive heart failure...) and ferric pyrophosphate citrate (which would make Matthew vomit if they gave it before I put food in his tummy). Matthew now starts cramping and is getting overtired while being restless at the same time. This is when mommy goes goofy and does everything in her power to make him laugh for the remaining hour. (or to hold him down as still as possible while the lines start to "suck" at his blood, pulling air and causing all sorts of commotion on the machine - the chanting "please don't clot, please don't clot" was used a lot here!) THE alarm sounds - one of the best sounds in the world. FREEDOM until Monday!


So then it is time to amuse Matthew again while we disengage him from the machine, heparinize and flush lines and clamp him off. Back to the scales, get a temp, measure blood pressure (for the 14th time in three hours) and get dressed. Wave to everyone vigorously saying bye-bye and blowing kisses (again, Matthew not me). Finish up last bit of bolus before getting in the car. It is now 1:30pm.

Head for home and pick up William at 3pm. Get home roughly around 3:30pm, try to get Matthew to take a catnap before his 4:30pm bolus...fail! Check blood pressure to see if we need a "bump up" dose. Get dinner started up and check in with hubby to see his arrival time. Balance dinner with bolus "shots" of 60cc's for an hour. Bolus feed and dinner are both done at 5:30pm. Eat, watch Matthew gag as us eating...very appetizing. Playtime/family for 30 minutes. At 6:45pm, get Matthew's bed time meds ready (see morning list) and set up feed pump for nightly feeds. Get boys to bed - start all over every Monday, Wednesday and Friday (adding LOTS of screaming, skin being peeled off and even higher blood pressure on Monday's for bandage changes).
Yeah- that was fun!

Friday- post transplant:
Turn off feeds when feed is complete and go back to bed, until Matthew starts jumping and squealing around 8am. Give morning meds at 8:30am (reflux medicine, bladder spasm med, lactobacillus, and steroid) 9am, feed 120cc bolus of UN-decanted, pop the top off the can, high calorie formula. :) Lasts about an hour and fifteen minutes. At 10am, give both anti-rejection meds.
PLAY!


Noon meds - Valcyte (on for only 4 more weeks) and Bactril (only four more months) and bladder spasm med. Followed by bolus feed of 120ccs. Then on to glorious NAPTIME! YAY (That is kind of mommy's favorite..especially since William is all done with naps now!)
This is followed by more playing and wreaking havoc of my house, while looking cute while doing so... yes, he is saying Uh Oh in the picture.


120 cc bolus at 4:30pm, mommy makes dinner, daddy comes home. Family time and BATH time!! Splishing, splashing, hooting and hollering commence. :)


Night meds, night feeds, night-night. To be continued the next day. Man, it's nice having a working kidney in there so we don't have to work as much on all the Stuff...just play. :) Thanks Marie. :)