3 months

So - it's been three months and one day since THE day that saved my son's life. What has changed? Everything!
* We go to the hospital ONCE a week...not twice, not three times - ONCE. That's huge!

* Matthew is interested in food! Before, just to touch it (or sometimes SEE it) would cause him to spew. Oh yes, those were fun days... Anyway - now he is making progress of licking, tasting and taking small bites of things like apples, peanut butter crackers, potato chips, bread, cheezits and cheetos. I didn't say they were all healthy did I? I'm just going on what we got at the moment. :) He also allows me to put in small amounts of formula in his mouth through a syringe without spitting it back out! HUGE people! If he would only DRINK from a cup instead of spilling out the water to play with it...I think we would be even further on this one. ;)

* Medicines Matthew has come off since transplant - calcitriol, kayexlate, Aranesp, Epogen, ferrous sulfate, ferric pyrophosphate citrate, sodium chloride, calcium carbonate, Clonidine patch, Norvasc, Labetolol, Minoxidil (Rogaine), sodium phosphate and Valcyte.

* Medicines that have lowered in amount - ditropan (weaning him off - bladder med), and predinsone (steroids)

* As of today, he is on FIVE medicines. FIVE! And in exactly three months - it will be knocked down to FOUR. FOUR!!!! Amazing!

* Matthew now has the "feel goods to be up to no good". :) He likes to rearrange my kitchen cabinet with were the canned veggies and soups are. He really likes to make beautiful artwork on my wall under my dining room bay window. And his favorite is push buttons on the remote until everything stops working and mommy has to call daddy for technology help! A close second would be turning his feed pump on and off during nap time. The little stinker has grown some and can reach more than I think he can!

* Most importantly, the last three months have helped us to realize what a blessing it is to have two healthy little boys in our lives. It has deepened our gratitude towards Marie and all she did for us by simply saying "I'd like to be tested". Amazing how ONE little sentence of five little words can really impact someone's life.
We are looking forward to a kidney reunion of sorts when Marie and her husband come to our house soon. Afterall - my son has her kidney - I can't deny her rights to visit. :) I sincerely hope we are able to do this often. So Marie can see the outcome of her gift in our lives - her gift of life. :)

Donor awareness month

This is the flag that flies at Children's Healthcare of Atlanta during every transplant surgery. This is the flag that flew on January 14th of this year for my son's kidney transplant. I still get choked up seeing this photo. It takes me right back to the moment, the moment life was going into my son on an operating table. All because someone was selfless enough to give the gift of life.

This April, I beg you to search your heart and talk it over with family and loved ones. Please consider being an organ donor. Research it, find out how to register for your state by visiting this site (http://www.donatelife.net/) and give someone a second chance. If everyone had a loved one that's life was dependent on a list...we'd all be registered. Please help them. They are people (daughters, brothers, grandmothers and best friends). They are not numbers.

Give them hope - give them life. Register.

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.

Two weeks ago

Fourteen days ago, my youngest son was hooked up to a machine that would empty his body of toxic blood and push it back inside him as mostly clean. He would be hooked up to monitors and have his blood pressure taken every 15 minutes. He would ride out stomach and leg cramps. Fight the want vs the need for sleep while people were carrying on conversations, televisions were playing and alarms were sounding. He didn't know any difference, but I did. It was his LAST dialysis session. :) Needless to say, my feet didn't touch the ground. When it was all over, I actually got a bit weepy. I going to miss some of our fabulous nurses. Yes, the docs make all the calls...but the nurses are the backbone of a hospital. I appreciate the care and concern they often showed my son...and at times...me.
That night, I tucked my "broken" son into his hospital crib one last time. A new day was coming in the morning. A new beginning and a new life, all in the form of a 5 inch kidney. Yeah...I didn't sleep for crap! And Matthew I think noticed my excitement and was "partying" it up from 2am til 4am. :) But I didn't mind in the slightest. We just giggled together. Then daddy arrived at a more respectable time in the morning at 7am after dropping the oldest son off at his parents' house. Soon we had a roomful of family including my parents and my aunt (the donor's friend).
Then...THEY came for him. I was so overwhelmed. I think I saw my mom cry. I grabbed my camera to take his last crappy kidney picture in the waiting room of the OR. Along the wall of windows leading to the elevator, I told him to soak up his last bit of sunshine since he would be stuck in the hospital for a couple of weeks. We went through all the consents and necessary talkings to with the transplant team. Then, they took him from my arms.
I've NEVER been happier to see someone take my son to surgery than I was at that moment.
Don't get me wrong, I was nervous...it was a major surgery. But happiness won out over nerves. But with the emotional battle occurring on the inside, I think I was crying while smiling on the outside. I just remember hugging Ian tightly. We headed up to get the entourage and I texted family and friends (that were being sweethearts and spreading the word for us) that he was taken back.
We waited. Steve, our donor Marie's husband, and her son Matthew (great name huh?) ;) came over to visit while Marie was still in surgery. We all talked and prayed together. I felt very peaceful the whole time. So back upstairs to waiting. We received updates every hour and Steve would text with updates on Marie. Then, one of the reporters from Sharewyk (Share What You Know) tweeted some pictures out to us.
Marie's kidney had arrived and Matthew's had been taken out. His kidneys were compared to rotten meat the size of a wad of bubble gum (ewww). Here's the comparison picture of two unhealthy kidneys and one GREAT kidney!
I started getting all hyper at that point. Life was going into my son, taking away disease and death. I just hoped beyond all hope that it would "take". We needed liquid gold to squirt out of that thing! With every update after that, I would ask...is there pee? Any pee yet? Did you see pee? No one answered that they had. AAAAAAAHHHHHH!
Then the transplant surgeon came out. I RAN into his arms right smack dab in the middle of the OR waiting room. I just gave him a BIG hug and sobbed on his shoulder when he told me Matthew was peeing for the first time in 3 months, REAL pee for the first time in his lifetime. Yep, there was a nice wet spot right there on his scrubs...but he just got out of surgery...he'd change them anyway. ;) I thanked him profusely and set about calling everyone! I really just wanted to see my son. But before we could see him, we took the picture we'd been waiting to take....
So off to the PICU waiting room to wait until Matthew got his bed assignment after recovery. That was around 2:30pm. We didn't see him until 7pm. He was NOT tolerating his pain well at all and was freaking out about being alone with nurses he had never met. They finally called me back saying that usually they don't let parents see their child like this, but it was all they could do besides sedate and intubate again. The moment he touched him, his blood pressure dropped by 20 points. He was still in pain, but he was near someone familiar and was able to start breathing again. They were setting up to bag him before I got there. His sats had dropped to the 50's and his arms, legs and face were turning blue. He pinked up nicely again soon after our arrival. Mommy didn't lay down at all that night. Just had to comfort my son since his pain meds were cut when his respiration went down. So I know he was hurting.
They next few nights got worse before they got better. The worse night being Sunday night when Matthew's prograf (anti-rejection med) reached dangerously toxic levels of 42 (needed to be 10 - 12). He was hallucinating and frantic. He didn't recognize us, would scream, tear at his skin and stop breathing. Another "bag him" night. UGH! But as all things do, they get worse before they get better. And now..they are SO much better! He is peeing up a storm...seriously...we're drowning in urine here and couldn't be happier about! His labs are still finicky, but look awesome! Marie is recovering well and even came to visit us this past Monday when we were still in-patient and she was needed across the street for her check up. Matthew was so smiley his last weekend at the hospital.
With transplant, we have gained a functioning kidney, urine and an appetite. We have also gained new family members (Marie and Steve and their kids). Matthew has become a brand new person. He is still Matthew, but more. He is for lack of better word and at the risk of sounding corny... ALIVE! His smiles are broader, his laughter is richer, his energy is multiplied. And our hearts and lives are SO full now. We could not be happier with everything. Still in awe of our son. Still overwhelmed of what Marie has done for him...for us. Our boy is healthy!!!! Thank you God for allowing things to come in your time and in your way. I could not see a happier ending than what we have right now. Our boy is healthy. :)

Thank you...

for saving my son. For giving him part of you when I couldn't.


For helping me to NOT take any more pictures of leaking hemo catheters that cause surgeries and blood transfusions and emotional chaos. Thank you for giving my son the chance to live OFF of a machine. Thank you for letting the only fluid that will be leaking out of him be the prettiest yellow, instead of red. :)


Because of you - I get to keep him. Because of your heart, he'll have a working kidney. Because of your unselfishness, I get to be selfish and keep him around for many more Christmases to come. Because God placed you into our lives, into my aunt's life.


I'm speechless...I'm grateful...I'm touched. Thank you God. Thank you Marie.

Wow!

What a difference a weekend makes! Matthew now has three new potential donors. EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE! That was my shriek of delight incase you didn't recognize it. :) Three people to selflessly volunteer an organ for my son. Who does that?? The parents of course and yes, my mother the grandma. That's my child, that's her grandson...we would do anything! Heck, take both of my kidneys and hook ME up to a machine!
Just a brief introduction of our new saving graces and kidney heros. :) The first is my wonderful SIL, Kristen.

This is a picture of Matthew and his Aunt Kristen and cousin Leah (and cousin Kelsey...though we didn't know she was a she at the time) last August when Matthew came home for the first time. He was only home for the weekend and then back at the hospital...but still...good memories of being home. :) Kristen was helpful even before Matthew was born. Watching William on several occasions while I had to get a needle in me or a standard check up. I always thought my brother "picked good", but now I see how off I was in my rating system. He picked AWESOME! It's not every day someone offers your child a kidney, especially someone who has only been married into the family for 5 years! I think we can say hands down - Kristen wins for favorite Aunt!! :) And I can say, hands down that I can't thank her enough for volunteering.
I do not have pictures of our other two volunteers...which makes them a whole slew of special. :) Marie and Steve, my Aunt Ellen's friends, have emailed me to request donor packets. I have met Marie one time, 10 years ago at my cousin's briesmaids' luncheon. ONE time. I do not remember her husband, though I'm sure he was at the wedding too. These are two people that have never laid eyes on Matthew and they are willing to give him something they have never seen before - their kidneys. Holy crap! Seriously...that's all I can think. I always said I would be willing to donate to anyone who needed something I can spare, and of course when I die everything is up for grabs (well, everything besides my defective kidneys...). I wonder if I would actually be willing when time came. I did offer to donate for my friend's daughter when she was undergoing a liver transplant. I will offer again when this one wears out. But someone I never met...never thought about it. But seriously, I got emotional when my aunt told me. I freely admit to blubbering like an idiot. :)
So here we stand, back at three potential donors and HOPING, PRAYING it doesn't end up like our original three donors. Ian is still going to do his test and keep things moving on that front, in the event no one else is a match. But if someone is a match, we will scoop them up and send Ian to fire fighter school. And get a paycheck that might get us out of the red zone! :) Gonna need it for those immuno-suppression drugs. YIKES! We have a new plan for a new kidney with new potential donors. My heart is happy and my mind is at peace. I am moved and grateful. I am humbled and hopeful. AND - I have a plan thanks to Mama M's giveaway today: http://fivecrookedhalos.blogspot.com/2009/10/amazing-giveaway.html
I have an idea of what I'm giving the potential donor when they wake up from surgery. OK, the next morning when they are less likely to cuss me out because they want their pain meds. Just have to make some decisions. It's all about the decisions. Decisions from some awesome people that I can only say WOW about.

A purpose

I feel so restless. I need to do something. Yes, my house is in shambles and the clean dishes in the dish washer are calling out to me...but that's not what I'm talking about. I need to fight, hug, cry and shout from the rooftops. I want to be an advocate for sick babies, both born and unborn...but I'm stumped on how to do it! I want to be an advocate to all of those, from day one to year one hundred, awaiting organ transplants...but just feel overwhelmed. I want to be a voice for those that can't find their's, but I can't find my way to them. My heart is leading me down a road to forget everything I had originally planned for my life, but my head is simply saying you are crazy and can't do it alone.
AARRRGGHHH! (No, I'm not a pirate...YES, I'm so frustrated). I think I will have a nice long chat with our social worker at Egleston on Friday. I wonder if I could start a support group of some kind...but for which group? Pregnant women with poor prognosis? Babies in danger? People awaiting the gift of life? It's a pickle I tell you, but I'm praying for answers and will post when I find them. Please pray and see how you factor into this...how you can help others in need. It only takes one person to start a chain reaction. I hope you can become a link and not a kink in this chain. :)

No fooling!

Happy April Fool's day...the day all 7 year old boys look forward to with great expectation...as well as a few "grown" men too. My mother used to always fool me and my brother every April Fool's day by waking us up a little bit early saying "it snowed last night!". And dumb as we were (snow in Atlanta...in APRIL??) we always jumped out of bed and ran to our respective windows. I'm sure I'll do the same to mine. ;) Carry on the tradition sort of thing.

But I also want to let everyone know something about April that you might not know about already: April is Donate Life month. I was never aware of it myself until December when Matthew went on hemo. This month is highly celebrated at the transplant center with guest speakers, support groups and prayers/memorials for those that didn't make it to get their gift of life.

Donation, both living and nonliving, is the single most precious gift you can give to someone. It is your choice! Yes, we believe it is our choice to have children and give life in that way, but God makes that ultimate decision. This gift of life is by our own free will...and trust me, that persons ENTIRE family will be forever grateful and humbled. The transplantation process is the "success story" of the medical world. To take out a failed or failing organ and give that person a second chance to do anything...remarkable! Giving hope, memories and time...you just can't buy that with a gift card!

We are less than 2 kilos away from starting up the testing process for Matthew. I pray every night that my bout with kidney stones back in 2000 will not hinder me from giving Matthew one of my kidneys!! Whenever my little one has a bad day, I think ahead to the promise of so much more for him...a normal life. A renewed life. LIFE!

Here are some donation facts I would like to share with you:
Despite continuing efforts at public education, misconceptions and inaccuracies about donation persist. Learn these facts to help you better understand organ, eye and tissue donation:

Fact: Anyone can be a potential donor regardless of age, race, or medical history.

Fact: All major religions in the United States support organ, eye and tissue donation and see it as the final act of love and generosity toward others.

Fact: If you are sick or injured and admitted to the hospital, the number one priority is to save your life. Organ, eye and tissue donation can only be considered after you are deceased.

Fact: When you are on the waiting list for an organ, what really counts is the severity of your illness, time spent waiting, blood type, and other important medical information, not your financial status or celebrity status.

Fact: An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care, respect and dignity.

Fact: There is no cost to the donor or their family for organ or tissue donation.

Fact: Signing a donor card and a driver's license with an "organ donor" designation may not satisfy your state's requirements to become a donor. Be certain to take the necessary steps to be a donor and ensure that your family understands your wishes.

Please, consider donation and talk to your families. Many people are not aware of the possibility or do not want to talk to family members for fear of creating "issues". Talk to your family...please...for all the Matthew's in this world. Don't take away their chance to live.