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. :)

my direction

This is a video I was proud of...sharing our story...getting the word out.
http://www.11alive.com/video/default.aspx?menuid=149#/News/Daily+11+%40+7-+%235+18+month+old+gets+a+new+kidney/49906865001/50317397001/68957395001
And then I opened my eyes and pushed my own feelings from that joyous moment aside. I'm glad they got the message of hope. People need to hold on to that - especially if that is all they have left. I wanted to be an advocate for so many things - unborn babies, preemies, the suffers of kidney disease, those waiting on the transplant list...and on and on. But I just can't do it all. I can't spread myself so thin, because then it all suffers. I'm not giving all of me to anyone.
So I have made a decision to pick up where the video left off...I'm going to be an advocate for donors. Everyone tells me - you must be so happy with your surgeon, nephrologist, hospital, caretakers...everyone. Yes. They say "this would never have happened without all of them to take care of Matthew". True, in a way. But honestly, it wouldn't have NEEDED to happen without Marie.
Without Marie's unwavering resolve to get my child healthy for the first time in his life...the hospital professionals would have been doing something else that day. A doctor can't make a working kidney out of thin air - and the one that does will be a multi-millionaire! He needs someone to volunteer, living or upon death, to give a kidney that works. Right now, according to the UNOS list, there are over 106,000 people waiting for an organ transplant, and 17 die each day because there are not enough organs to go around. So many are taken to Heaven, when Heaven KNOWS we need them here!
My sister in law and I will be walking in the Kidney Walk, sponsored by the Kidney Foundation on April 24th. We have formed a team - Team M&M (in hope for Matthew and in honor of Marie). We will wear green to signify the donor awareness ribbon. Please visit our site: http://donate.kidney.org/site/TR/Walk/GeorgiaandAlabama?px=1606628&pg=personal&fr_id=2431 Join our team! Help us make our goal and give the most we can to bettering the lives of others that are still waiting. Let us walk together (in person and in our hearts) to give them hope. So they know people care. So people can learn the truth about organ donation instead of the taboo.
If the life of your loved one depended on a list...I bet you would sign your donor card in a hurry.

World Kidney Day

I've been quiet...I've been busy. It takes a LOT of energy to keep up with Matthew now. :) And we've been getting over a tummy bug. And who knew that a 24 hr bug could last 5 days in someone that was immunosuppressed? Now I know! Man, that was a LOT of puke. blech! Thursday will be a big day for us. We have clinic and Matthew's prograf levels and creatinine will be tested - with big hopes of lower values on each. (With dehydration and a 10% loss of body weight, the very medicines that help him to keep his kidney can kill his kidney...it's a fine line). Thursday is also a big day in other regards: World Kidney Day!!
So...how does this affect you? Well, have you checked in with YOUR kidneys recently? I didn't think so. The goal of World Kidney Day (as stated on www.worldkidneyday.org)-
# Raise awareness about our "amazing kidneys"
# Highlight that diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)
# Encourage systematic screening of all patients with diabetes and hypertension for CKD
# Encourage preventive behaviors
# Educate all medical professionals about their key role in detecting and reducing the risk of CKD, particularly in high risk populations.
# Stress the important role of local and national health authorities in controlling the CKD epidemic. Health authorities worldwide will have to deal with high and escalating costs if no action is taken to treat the growing number of people with CKD. On World Kidney Day all governments are encouraged to take action and invest in further kidney screening.
Oh you don't have diabetes or high blood pressure? GREAT! Neither do I! Guess what? I have stage two kidney disease. I've had ONE UTI, that caused ONE kidney infection. One NASTY kidney infection that I kept explaining the fever due to sinus infections, the back pain to my college bookbag and working 12 hour shifts at the hospital on my feet, the fatigue due to getting 4-5 hrs of sleep nightly trying to get all of my classwork done while staying up on the phone with my boyfriend. Yeah, I still don't have high blood pressure; I still don't have diabetes. I've passed glucose tolerance tests in pregnancy; I've never passed protein in my urine. Technically...I should have healthy kidneys. I don't. All due to an infection from when I was 19 years old, and passed twin kidney stones. That was a fun day!
So just for the fun of it...ok...it's not fun but it will lead to MORE fun in your future if you find out...make an appointment with the doc. Pee in a cup, expose a vein, and put a cuff around your upper arm. Just to check.
I thank God for Matthew. I never would have known. Now I take supplements and follow a better diet to preserve kidney function. Mine are working at 82% and I've got a long way and a long time before they get bad...if they ever do. But it is peace of mind knowing. It helps me plan for the future. It makes me do research and gain knowledge. It allows me to spread the word about how awesome kidneys are and how often they are taken for granted.
Have you checked your kidneys lately? Maybe its time.
Happy World Kidney Day to all of my kidney friends and family!!