Sharing what I know

Change. Change is natural - the phases of the moon, the turn of the season, the transformation from caterpillar to butterfly. Change is sought after - job promotions, bigger houses, a new baby. Change is resisted - moving, divorce and diets. Change can be all three as was the case in my life, the mother of a special baby boy that just happened to be fighting end stage kidney disease when he was born 2 months early.
Anything you do for 18 months, becomes normal to you and when it is time to change things - it gets a little hairy! I was used to administering 14 meds a day. I was accustomed to hemodialysis three times a week. It was a daily routine to wash lots of laundry due to lots of vomiting. My son wasn't able to get in the bath tub, we couldn't get his hemo catheter wet. His means of bathing was via a sponge bath, no splashing in the tub. So even though I despised this life for our family, I was comfortable with it...it was all I knew.
My sweet Matthew's life changed on January 14, 2010, when a hero voluntarily gave up one of her kidneys to be placed into my son. I can still vividly recall the dizzying array of emotions I went through that day. The hope, excitement, anxiety and gratitude. For the first time in my son's life - he would have a normal, working kidney. And it went to work right away! His congestive heart failure cleared up. His rickets slowly corrected. All four of his blood pressure medicines were weaned off to where he was finally on NONE. Diet restrictions - gone. Hemodialysis catheter - removed. Bath time - splish, splash! He had a spark to him, he had life in him!
This transformation was awesome to watch, but it was also intimidating to see. I went from watching his electrolytes (potassium, calcium, sodium) like a hawk to analyzing every tenth of a point increase in his creatinine. Before transplant, I knew those numbers would be bad. OK, so it went from 7.1 to 7.3 - no big deal! But the minute transplant was over...WAIT!!! His creatinine jumped from .4 to .5!! This "new normal" took some getting used to for a bit.
I'm sure many of you have heard the saying that life in the NICU/PICU/ICU is similar to a roller coaster, with many ups and downs along the way. You believe going into transplant, that everything will be be downhill from now on. But if you are honest with yourself, you are trading one set of problems for another set. A set I gladly embraced with arms wide open to get my one year old son off of a machine for three days a week! But needless to say, we've had highs and we've had lows.
The worry is still there - I don't think it will ever go away actually. Now I worry about side effects, kidney toxicity and rejection. I wonder if this cold will stay a cold or develop into something more ominous. Is that a fever from cutting molars, or a fever that he is showing a sign of rejection? Did I push enough fluids yesterday when it was so warm out, don't want to throw off that BUN!
I think reality set in when Matthew was hospitalized for a simple "cold" from someone else that turned into viral meningitis and encephalitis. He went from playing with his brother that morning, with a barely there fever of 99 and a runny nose to going into shock...all in four hours time. His lips were blue, his arms and legs were cold, he would not respond to his name and didn't even move when they put in an IV. That's when his doctors told me nothing ordinary will ever be ordinary for my son. He's right, Matthew has always been extraordinary actually. :)
That was just one lesson that I learned the hard way. I've learned a lot - from Matthew, from the transplant team, from other mother's that have traveled this very same journey. It's a close knit family. I've handed my son over to a surgeon 20 times, it never gets easier. I've picked out clothes for him to be buried in twice, I still get emotional when I see those outfits. This "club" we are in is a great support team, I wish we never had to have a new member in it.
But if you are a new member, I would like to share what I know with you in the hopes that you don't have to go in blind. Knowledge is a precious commodity that we can't leave checked at the door to the OR. I do not know everything (my husband is probably rejoicing that I am admitting that). Circumstances are different since people are different. No two people will react the same way, but you will find a lot of similarities. I truly hope they help.
- you are your child's advocate. Do not go in looking for friends from the transplant team. Yes, that does come eventually, but you are there for your child first and foremost.
- double check everything! From the meds the nurses bring in, to the solution hanging on the IV pole, to the labs they are drawing for that day. My son would hoard potassium in his body, much like mine hoards potato chips! Even though he was in-patient to receive a new dialysis catheter, the nurse hung potassium chloride unto his IV stand. Needless to say, that was GONE!
- research everything. Whenever Matthew was put on a new medicine, which was often, I would look it up and see side effects, interactions, dosages and the like. Four days post transplant, Matthew's prograf level (anti-rejection drug) climbed to a dangerously toxic level of 42. He was hallucinating, frantic and eventually had to be bound and strapped to the bed. It was all due to an interaction with the blood pressure medicine they had him on. It caused the prograf to stay in his system longer and just keep building. I told them of this interaction. They took him off and the next day, his levels were down in the 20's.
- never be afraid to speak your mind. Yes, the doctors know all about this disease, that surgery and every kind of procedure...but you know your child! If something doesn't feel right - say something. If they are taking things too far for your little one - tell them to back off (in a nice way of course). You do not want to gain an enemy, you want an ally. One that grows to respect you and your opinions.
- accept help! During transplant, after transplant, when transplant is a distant memory...accept help. To be a caretaker is physically and emotionally draining. Add on the "normal" needs of raising a child and family - wow! Your friends may refer to you as superwoman, but you do not have her ability to go that long without sleep, food or just quiet time to decompress. Help comes in many ways: from someone taking care of your dog, to bringing over food for the family, or to sitting with you at the hospital.
- learn the motto: expect the worse, hope for the best and be happy when it is somewhere in between. Nothing is perfect in the medical field. A success is that you walked out of the hospital! Learn to appreciate the little things. Understand that things happen for a reason. And come to accept that just because you feel NOW is the best time for something...it might not be. But that time will come, and it will be worth the wait!
- trust your instinct. I knew something was off with Matthew when he "just had a cold". The transplant coordinator was telling me to bring him in the next day if he wasn't feeling like himself by then or if his fever had increased overnight. If I had waited even an hour longer...I honestly don't know if Matthew would be here. If you look like an overly dramatic mom that makes mountains out of molehills - so what! Anyone that has been there, will completely understand and those that haven't - if they could walk a mile in our shoes right!
- look at your child, not at the machines. If something is alarming and nurses are running every which way to get to your room, only to find a happy child sitting up and clapping while watching Mickey Mouse cartoons... I think we can safely say we have a faulty lead! If the machine is showing good things, but your child's eyes suddenly roll back in his head and he turns white - hit that nurse button.
- rejection isn't the end of the world. HA! You wouldn't have been able to tell me that a month ago. At my son's 6 month biopsy, they found rejection. Needless to say I was devastated. I was already planning ahead to see when Christmas was and if it would fall on one of our hemo days. But they found it early and we fought it hard. One month later - gone! Rejection is normal. It is exactly what the body is supposed to do. We are trying to counteract mother nature. It's a long, hard battle. Some you will win, some she will win. But hang on to hope that it all turns out for the best.
- live your life! It is so easy to retreat to your safe little cocoon to keep all the nastiness away. And yes, you will have to do that at first or if you run into any road bumps that cause you to go up on anti-rejection meds. But this transplant was a gift, from a friend, a family member, an angel with a sign donor card. Honor that gift. Celebrate it! Rejoice in all the second chances your family has just received. For my son's kidney-versay, (his transplant anniversary) we are celebrating in Disney World. The happiest place on Earth, because we are the happiest people on Earth. All thanks to one woman that said yes to being an organ donor.
And one last thing...have you signed your donor card yet?

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. :)

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. :)

HAPPY NEW KIDNEY YEAR!!

We have a DATE! January 14th!!! And I have no words anymore. Seriously...I think my brain slipped out of my ears or something. I can barely put this sentence together and it is requiring a LOT of backspacing due to my fingers and brain not communicating right now!
Just had to share!! I also posted on Matthew's caringbridge while my brain WAS working (for those brief five minutes).
OK, I'm going to Wal-Mart. I'm too excited/nervous/happy/hysterical to sit still.
I'll come back when my brain does!
WE HAVE A DATE!!!! New kidney here we come!! :)

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.

The one I keep starting over

I've been trying to type this post for about two weeks now. And MY...how the weeks have changed things around here! In the course of 11 days I've gone through fear, anger, relief, elation and doubt. Two Wednesday's ago (Dec 2nd) my son was rushed to emergency surgery when his hemo-catheter was pulled loose. Yes, the catheter that runs straight THROUGH his heart. And yes, the same catheter that was replaced on Nov 3rd the previous month. Needless to say, I didn't take this well...at all. Luckily, for Matthew's one year hemodialysis anniversary, Matthew's new catheter worked much better than the tiny one placed in his little 5.6 kilo body the previous year. I was still a mess that we had made it to his one year anniversary. Yet another milestone most babies under the age of one never see on hemo...Matthew has fought his way through. With congestive heart failure, fluid build up EVERYwhere, two bouts with sepsis, numerous clots and catheter issues and three surgeries for perma-catheter placements... I think he's pulled his load enough this year (without even touching all the stuff he went through before hemo!). Time to go after the transplant team! I called for a team meeting immediately to make sure everyone was on the same page.

Guess what? We got a pager. :) Guess what else? Our potential donor (remember St Marie - donor number 4) passed her kidney test screening (that no one else has so far)! OK...one more. Guess what again? Marie has been "rush ordered" for her next testing/screening. It will be THIS week. THIS Friday and Saturday!! Do you know what that means? We are almost DONE! That is the last part! We are fortunate to have a donor in GREAT health and she really takes care of herself and exercises regularly. The only possible "kink" could be the number of veins feeding her kidneys. We want ONE juicy big vein!! If there are more than that, the surgery is off. :( Nothing that can be controlled or manipulated...so fingers, toes and eyes are crossing in our family this week. We could actually KNOW if it will work out before Christmas! :)

I'm really not trying to let myself get too excited. It seems little Matthew has a knack for finding good fortunes only to be kicked in the kidney so to say. I don't know if we can take another hard knock. We will of course...but it won't be pretty. We are really hoping for a Christmas miracle. A true gift from God this year. He gave life to His Son, now I'm asking that he keep my son alive.

As we say in the kidney world, Matthew appears to be "fading" a little bit more each month. Yes, he is still happy and active, but the cost is more medicines and longer dialysis. We have been talking four days a week soon. I don't want it to come to that. I don't want my son plugged up to a machine more days than he is not. It gets to be the question of am I doing this for him or for me...

We do have an "out". If sweet Marie can not donate for some reason, Matthew gets listed for ALL matches. Remember that pager I mentioned. I'm honestly not expecting a page before Christmas since we are only listed for a perfect match...aka - his twin kidney! It happens, but it is rare. So placing him on the "anything" list, the docs think he will have a kidney by February. So January for a living donor, February for an angel donor.

This could be the end of our way of living...a way of living for over a year. I don't know any other way. It is both exciting and frightening. The trading of one set of problems for another. Trust me...I'd much rather have the transplant problems any day! :)I'm just nervous. I know what I'm doing now...pretty confident in my day and my knowledge. Soon, everything will change.

I'm getting ahead of myself and I'm rambling. I tend to do that when I'm nervous. I think this post has ended up being more for my mind than to keep my friends in "the loop". I do have a couple requests please:
Please keep our potential donor and her family in your prayers as she gears up for testing. Give them all peace, comfort and health during this time. It was SO much easier when I was the one to go under the knife for my son. That's what every mother should volunteer to do for their child. Take away the pain. But when someone else comes forward...it really leaves you speechless and grateful! (not to mention teary-eyed...often!) And please pray for Matthew. It is every mother's dream to see their son grow up healthy and strong. I don't want to bury a child. I can't imagine the pain. This surgery has the possibility of saving my family from that nightmare.

This surgery can give me the dreams of motherhood. A toddler that toddles without rickets holding him back, a child that has the option to be a picky eater because nothing is restricted, the freedom to stay home on rainy/cold days instead of fighting traffic to get to dialysis. I can be mommy more than nurse. Yes, I will still play nurse...I will always play nurse. I don't mind that. I just don't want him to play the "sick" boy anymore. I want a healthy boy for Christmas...please God...give me a healthy boy. Give him a kidney.

Extremes

Found a loop-hole in the Children's healthcare system and am able to do a quick post as Matthew just went down to bed...hopefully. Yes, we are still here, but more on that later (see his caringbridge site for full updates).
Being in patient, I was able to witness a beautiful moment today. The first steps into a new life. A liver patient received his life saving gift over three weeks ago. Since then his tiny 8 year old body has been wracked with pain...mind numbing, gut wrenching pain. The doctors finally listened and reopened him to find a MASSIVE infection growing right next to his new liver. If left in much longer, the liver would have not made it. He arrived up from PICU yesterday. This afternoon, he took his first steps down the hallway...steps into a longer, healthier life full of possibilities. Everyone came out of their rooms and even the nurses and techs stopped to watch and then clap. Teary eyes were abdundant! It was beautiful!
Today I found out my son was developing congestive heart failure. Something a mother doesn't want to hear about in the first place, let alone on a child that is 16 months old. When they placed his new catheter, they ordered a chest x-ray to make sure the lungs weren't nicked and they were in the right artery/vein in his heart. They found fluid in his lungs. The next day they ordered an ECHO and an ultrasound of his heart. They found more fluid and that his ventricles were enlarged and thickening. He has had dialysis every day this week so far and will continue to have it every day until he is well enough to go home. They are drawing off as much fluid as possible. He has lost 2.5 pounds of fluid in two days. Blood pressures have come down from dangerously high numbers like 180/122 to 138/74. It's working.
He's not well enough for a transplant...he's not even well enough for them to put tubes in his ears like they thought they would do while we were here. But he is happy. He is smiling. He is "talking". He is pointing out every balloon in the hallway and picture on the walls. Everyday they have given me "worse" news by lunch time, after their earlier diagnosis of "maybe you can go home today". No, as much as I don't like to admit it...Matthew is a very sick little boy right now. But he is getting help! They are doing all they can for him, ordering procedures, radiology and labs to figure out this little puzzle that is my son.
If you had talked to me this morning, after getting 2.5 hours of sleep, you would not have recognized me. I have extremes...highs and lows...always been that way. I do tend to cover things up with my dry sense of humor...but those that know me can see through that. I was hurting for my son this morning. Hurting for his future and how unclear it suddenly was becoming.
Then I saw David, the 8 year old, and he inspired me. Kids do the darndest things, but inspire is not usually a word associated with an 8 year old. Crazy, overwhelmed, frustrated...those I hear more frequently. But I see little David and how far he has come and I look at Matthew and see how far he has come. From the threat of termination to the treatment of a transplant waiting in the wings. He's a fighter. And no diagnosis is going to keep him down! He won't allow it. I won't allow it! No need to hang my head and cry (hello - we all know Atlanta is a little flood happy at the moment). So if he is refusing to throw in the towel and start all the "why me's?"...well, why should I? We are going to keep pushing through until he is well and receives his transplant. We are going to fight this new battle because I'm a mom of a soldier boy. We are going to laugh and say statistics be damned, because they have never meant anything to us before as Matthew has always been the exception. We are going to go from one extreme of poor health to another of optimal health...because that's all we can do.

Hidden

Look out the window? See Mother Nature's display. God is painting the trees again. Beautiful isn't it? Did you know it was there all along? These fiery reds, striking oranges and vivid yellows...all hidden away under a peaceful shade of green. Yes, anthocyanin and carotenoids are there the whole time, you just can't see them. They need a catalyst to show their true colors and certain situations (dry, warm summers followed by cool, wet fall nights) will make the show even more spectacular. But I'm not going to give a science lesson (darn huh) ;). Just know I did very well in my plant physiology class and have a ton of respect for all the plant processes, that when broken down seem more complex than anything I do during the day!
Hidden...we keep many things hidden in this house.
Feelings are hidden to protect others that "haven't been there before"...to make it look like all is fine and we are coping. That having a medical needs child does not put a strain on a marriage while one partner fights for a child and the other fights for the couple...never at the same time, so always at odds. That others don't have to tip toe around us for fear we will cave in to depression or anger or finally snap. Feelings that we can not show enough gratitude to all who have made us feel special yet normal. Seriously, you'll never know the depth of love for you in our hearts.
But, feelings are expected to remain hidden...they are personal. Each person copes differently with feelings. I'm fortunate enough to have an outstanding husband that doesn't let me clam up and sulk...though I want to! He makes me talk things out and feel better while crying on his shoulder and snuggling in his protective arm. It feels so good to be there...protected. *I have a secret to share with you* <(whispering) I sometimes climb into my husband's arms, he scoops me up like a child and I wrap my body around his and stay there for minutes on end> I need that when I feel my most vulnerable. I need to be enclosed fully to finally feel protected from all the crap out there that is heading straight for me.
And now, I'm going to do that to my children...and we are ALL going to hate every minute of it. :( After this weekend, we are going into hiding. We ARE in hiding already...kind of. To the point that we are not going to the kiddie places or high crowd areas. But now we truly will be hidden. I will allow one final hurrah so to say with trick or treating in my in-laws neighborhood and then my dad's birthday the next day with the cousins...but after that...no more. :( Of course we will see the grandparents, but we can't be around kids of school age - pre-school through college. It's all school and school is just another name for educated germs. Matthew will not be allowed to move ahead with transplant if he has so much as a cold. He NEEDS a transplant. Those sweet potential donors are trying their hardest to get him one. We should find out in about a week. :) If no one is a good match, Matthew will be listed.
Here's how it goes, Egleston will not list a baby (especially one that is about to reach his one year dialysis anniversary) while he still has living donors going through the process of testing. A baby that has been on hemo for that long, with a common blood type, will get a kidney within a month - tops. whew! I was one relieved momma after I heard that! Living is better - will last longer, will work quicker, but a cadaver kidney still saves a life and honors an angel.
So in order to protect my family, I have to PROTECT my family. I know this will be hard. I'm not all that happy about spending day and night at the house. I just want to cry thinking about William not seeing any friends. It makes me so sad that Matthew doesn't get to experience sights and sounds that every other one year gets too. But if I don't, he might never get to experience anything. He can't experience much from a crib in the dialysis or from the PICU hooked up to monitors and IV's due to an infection/virus. I KNOW this is going to tick off some people...especially come Thanksgiving and Christmas...but they will just have to get over themselves. They are big girls and boys that need to act like that. If the shoe was on the other foot, they would do the same thing. Family comes first, my sons come first! We will spend both holidays quietly at home. And we will miss the extended family and friends VERY much.
But in doing this THIS year...in remaining hidden...image the wonderful display NEXT year when we come out. When the catalyst (transplant) occurs and Matthew is free to show his true colors that have been hidden behind the red and blue catheter lines. When he shows us what a kidney can really do! Be on the look out - God will be "painting" the picture of pure health! :)

Last Christmas, Matthew and William in front of the tree.

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.

Broken heart, broken kidneys

It seems I am not to be the donor for my son. I called over to Emory this morning in hopes of getting my 48 hr urine test on the way. No such luck, it's been put on hold. Though a nephrologists does want to see me. I have stage two kidney disease. They did a GFR (Glomerular filtration rate) to test my kidney function by collecting 24 hrs of urine and then a blood test to test serum creatinine in my blood to contrast that with the creatinine levels in my urine. They want to see how much creatinine is being excreted, but also how much creatinine is left in my body. Normal level range in 90 - 120. Mine is 82. Not bad, mild damage to say the least, not donor material.

My heart is breaking. I want my son to feel better and here we are again at square one! Another two to three month process now for my hubby...who is still in the interview process for a new job. A physically demanding job that he will not be able to do the physical requirements of if he is having his kidney taken out in December. Started with three potential donors - now down to one. Damn my pride.

I went to a VERY bad place after receiving the news this morning. I'm fortunate in that I "bounce" back fairly quickly. This obviously is how things are meant to be in the long run. I need to be with my son during and after surgery. I know him, his medications, dosages, reactions and labs. I've been there for all of his surgeries, some by myself in the waiting room. It seems I'll be doing that again for transplant. Hubby across the street, his parents with him, my parents with William. I can handle it. I've handled it all. But seriously...DARK place this morning.

I have signed my donor card, all in honor of Matthew. I was thinking in my mind how I could "cheat" the system. Re-write my will to say that Matthew is to get my organs if I pass before him and he is currently on the waiting list or under-going dialysis treatments. Then I would over-dose. I'm NOT going to do that. I just felt like I could this morning. I just want my child to stop hurting. I DO NOT CARE IF I AM ON DIALYSIS IN TEN YEARS!!! I just want to make sure my child is here in ten years. Hell, his butt could finally drive ME up there and make it full circle. ;)

I was talking to a friend this morning about how all mother's know what it is like to see their child in pain. All mom's can empathize with that. A broken arm, diaper rash, ear infections - all are BIG deals to that mom, because that is her child. She would do anything to fix them or make the pain go away. That's what I wanted to do, but in an extreme and selfish way. I'm good I tell you! I'm just sad, not suicidal.

I will do what needs to be done next. I will continue to take my child to hemodialysis twice a week. I will administer medicines at home. I will monitor his blood pressure twice a day and chart it. I will give him bolus feeds every three hours through his g-tube. I will sit and wait to hear word from my husband's surgery and my son's surgery. I will care for both of them as they are on the mend and recover. I will not give him my kidney. I guess my heart will have to be enough for now.

Their ALL family

We have a new family member. Her name is Kathy and Ian adopted her last week. I've finally gotten in contact and have been emailing her back in forth for a few days now. She's a pretty neat person to get to know and I'm glad she is part of our "family" now. Want to "meet" her? Here is a little about her from her own email: I should be pinning on my E7 in a few months - been in the Army for 17 years - 14 active and the last 3 Reserve. Last time I was here was OIF1 and I was in Tikrit - home of Saddam. The unit I was attached to - 1/22 Infantry were actually the guys that pulled Saddam from his spider hole. I was in 5 fire fights and 1 IED explosion so I was one of the first females to get a Combat Action Badge from OIF1 - the IED is why I got out of active and went into the Reserves. It is a little different but still is great to work with Soldiers and do the job we do.
Yes, we have adopted a solider in Iraq...you should too! It has been a real pleasure getting to know her! Please say a prayer for her safety and all the men and women that are still fighting for us! Even though my husband is no longer active duty, we still look on the military as our family and think of them often.
Speaking of family, another "family" member of a different kind is experiencing a life changing event today on her 8th birthday. She is getting her kidney transplant at Egleston. Talk about a happy birthday! (Of which I need to give a shout out to my super cute niece who turns 4 today!!) I am leaving the link for this little girl's mom's blog. Please take the time to read and share and pray for her family and the donor's family this week. http://theotherjuliaroberts.itx.net/ Happy kidney-versary Quinn. I hope I am able to come visit you next Monday on the 6th floor...and I hope you don't mind my kidney baby tagging along. :)
I would like to visit on Friday, but I will be spending most of Matthew's dialysis time over at Emory! Yes, I finally got things fired up and things moving along. I got my pretty jug in the mail today and am flabbergasted at how much urine they want me to put in there. I'll include a picture of the jug late, but it's a doozie! I will be doing my blood work on Friday. We are lucky to have Kim as Matthew's nurse this week. She is SO awesome with him, that I do not mind leaving. I have scheduled my appointment around his normal nap time anyway, so he won't miss me for long. Just have to be back in time to give him his mid-day dose of BP meds and a bolus feed. The nurses aren't allowed to do such things if it is not written down by the docs. Hopefully I won't be long, or that is going to be one irritable and hungry baby!
Anyway, I must run and get both boys up. Only a 20 minute nap for Matthew...this is going to be fun! Off to his 15 month check up and shots. :( Gotta get them before transplant. I'll keep you up to date!

Adrenaline

First and foremost - a shout out to my awesome hubby and family for allowing me to be selfish last night...and this morning. Getting in at 1am and not going to bed until 2am, I knew it would not be the wisest decision for me to brave the morning commute for a two hour drive going 20 mph into Atlanta again (for the 4th trip in four days). Love, hugs and kisses. Thanks for allowing me a little sanity. :)

Yesterday was exciting, in good - bad - good ways. First and foremost, I am officially recognized by Emory University Hospital to be a candidate for my son's kidney donation. YAY!!!! I got the call yesterday and completed my phone interview. No, I'm not being paid or bribed by my one year old son. Yes, I am a healthy person (oh...well except for migraines, year round allergies, a severe allergic reaction to penicillin products and a history of kidney stones) hmmmm...silence on the other line. Crap! Kidney stones? Just ONE episode 9 years ago. :) OK, we'll clear you after a detailed look at your kidneys and an in-depth urinalysis. YAY again!!!

So, here is how it is going to go. Emory's financial adviser is working with my insurance and with Matthew's to clear us from financial problems that they can find. Once that is complete, I get my jug of pee. :) This is the initial jug of pee collection - just to watch for protein in the urine, BUN, creatinine...so on and so forth to show healthy kidneys. Then once the results of that come in, I'll be mailed another jug (two actually) for a more in-depth look at electrolytes - calcium, phosphorus, parathyroid levels...all the fun things that can lead up to more kidney stones. Please let me pass this!! This is what I'm worried about! Not for another stone in the future, but something that would knock me out of the running. :( Then, once those results are back (which will take a while since it is run through a company in Chicago) I go to the two day in-patient gauntlet. This will include CT scans, renal and chest ultrasounds/xrays, stress test, EKG and open discussions with surgeons, coordinators, psychologist and chaplains. Again, if all of that goes well - we set a date! If we have absolutely NO hiccups, we could be transplanted by Halloween. :) I'm expecting November, trying to keep a little more down to earth about all of this. But I'm so excited just to move forward!!! EEEEEEEEE!

I was going to make this a two parter journal about my adrenaline rush last night at the Georgia Tech/Clemson game...but it's time to go wake up my three year old. So, I'm out of time. Just know - we won! But looked REALLY bad doing it. Props to Clemson for keeping the game alive. And props for GA Tech for not loosing sight of the W! Go Jackets. The Golden tornado is going after a Hurricane next week! :)

And in closing, just want to show what Matthew's kidneys look like now and what they will look like in a few short months. :) Just incase you were wondering...his kidneys are the ones that look like chopped liver. ;)

Pick me, pick me!

No, I'm not entering a spelling bee contest (I'd loose miserably!), I'm getting the paperwork in to be my son's donor. Unfortunately grandma's glucose levels were just too high...even with the cheating. Yes, we were trying to cheat. :P It just wasn't meant to be. But honestly, all along since we were told Matthew would need a transplant to save his life back when he was three days old...I knew somewhere deep inside that it would be me. Hoped it would be me. I really want to help my boy out!
Now that the time has come for me to start the tests and procedures, I'm both anxious and excited. I can't wait to get things started! I've been waiting for 14 months after all! I don't fear pain, needles, stitches, procedures or tests. I just want my baby to feel good for the first time ever!
Yet with all of this bouncing on the couch (think Tom Cruise) over here...I think I am remaining guarded and cautious now. My mother is in perfect health, yet she's been passed over. My own health...eh... I have migraines, IBS, severe PMS and arthritis in my wrists. I've had kidney stones in my past and monster of a kidney infection before. I'm nervous my kidneys aren't good enough. Well, one is...but I'm scared the one that would be left in me isn't. I'm not afraid of kidney failure or dialysis for myself. It wouldn't be fun, but if a baby can do it...come on right! ;) Though babies are exceedingly less whiny than adults; I've seen this first hand! My biggest fear is to go through everything, only to show up at an ultrasound to see I have a surprise in my kidney - a stone. Now I haven't had one in 9 years! I've become more aware of my diet and my water intake. But my dad has had about 26 kidney stones total, my brother is on...number 5 o 6? My dad's grandmother died due to complications of not passing a stone. Odds aren't in my favor...
But it doesn't matter. I'm going to try. I'm going to do everything I can to help my baby feel better for the first time. My donor packet is on it's way today to Emory. I am praying for a speedy process. Luckily if I am the donor, they will fit surgery to my wishes...my wishes are for this to have been over with yesterday! So, it is full steam ahead...you up for a ride with me? Hang on...it might get bumpy!

Back to the drawing board

OK, so it looks like grandma will not be able to donate. She didn't pass her glucose tolerance test. It would not have been any harm towards Matthew, but the transplant team will not take a kidney from someone that may be pre-diabetic. Diabetes is usually the number one route to dialysis in adults. She is attempting to re-take the test again tomorrow. We are not optimistic, but it will make her feel better. The pass level for the 2hr test is 140 at the end or lower, she was at 162. I told her not to worry about it, Matthew will get his kidney. Whether it comes from her, me or an angel with a signed donor card...I don't know...but it WILL happen! And that is what is important.
Of course she wants what is best for her child (me). No mom wants their child to go into surgery...especially the same day their grandchild goes into surgery! She wants to make this as easy as possible for me. She knows that if I'm recovery from surgery, I can't help Matthew recover from surgery as much as I will want to. And she also knows that I will put myself at risk and do more than I should just to be with him. Yes, I'm aware of the cardinal rule - take care of mom so she can take care of the kids. But I don't follow it. (I better check to make sure no one at Emory is reading this...)
But through this journey of my possible organ donation to my son, I will chronicle the highs and lows. The pain and the praise. The heartfelt and headache! I want to use this opportunity to share with others the ins and outs of organ donation with others that have a natural curiosity or who may someday consider being a donor to a friend or family member. I hope to shed light on the experience and take away the mystery of it all. I will be brutally honest with facts and my opinions of them.
I have also (with the aid of some bloggy friends) put labels in the left hand column of the screen. Everything I share in regards to the transplant of course will be labeled under "transplant surgery". I have all of Matthew's recipient story on his caringbridge site and will update that as I always have with his side of the journey. I hope you are able to join us for both in prayer and praise as we get little Matthew moving on to the fast track of good health!

The verdict decision

Judge and jury collaborated this week at Egleston Children's hospital in Atlanta and in the small city of Woodstock in the Faust household of my parents, where I was staying this weekend. We had to do some soul searching since all three donors who tested came back as matches. My match was just a smidge above daddy's and grandma's...making me the likeliest to go first. The better the match, the better the chances against rejection. However, there were other things to consider.
Time- time to go down to Emory for multiple tests. Time to recover from surgery. Time to be with Matthew as he is recovering from his. As a mom to two little children, I can't take my time lightly. I already feel like William, the older brother, kind of gets crapped on a lot due to some of Matthew's medical needs. He's not going without food, shelter or people to watch over him...but he misses his mommy and daddy. Also during the recovery time I would not be allowed to pick up anything over 20 lbs for 6 weeks...two kids, both over 20lbs...yeah - like that's not going to happen. I only made it about three weeks after my c-section before I picked up William. I'm not really one to follow doctor's orders for myself. Heck, my 6 week post-partum check up didn't happen until Matthew was one and daddy was home for the summer. Oops. ;)
Matthew- like I have said in another post...I really don't want to be there for Matthew's surgery. I want to be blissfully unaware. Yet, I can't keep myself from him. I had already told the transplant surgeon that they would have to arrange a shuttle for me to come see Matthew the day of surgery. He said "you won't feel like getting out of bed, let alone going across the street". I told him about my 36 hr post "jaunt" up to the road pushed in a wheel chair after my c-section to Scottish Rite a mile down the road. He said he would arrange something that was more safe. ;) (I'm a bit pushy if you can't tell) I can't imagine NOT being there when he is wheeled away, or when he wakes up, or when his labs are drawn, or when he finally has YELLOW urine!
Chances- this kidney will not last as long as the others (more than likely, but my son is NOT supposed to be alive either...so I take that with a grain of salt.) My mother will not be able to donate after this year. She will be considered out of age range for pediatric donation. She is a willing donor. If I or my husband go first, she is out for good. If she goes first, we still have TWO other willing people waiting in the wings. This could possibly get him close to 50 if each kidney lasts 15 years. :) Then maybe big brother or his wife or his children would be willing to make the ultimate sacrifice. If we don't use grandma now, after this transplant we are down to ONE donor instead of two. There's a no brainer.
So there are the "logistics" of the decision. Grandma will be Matthew's first donor. She will begin her donor testing soon through Emory. Hopefully she will pass all of her tests with flying colors. :) But even if she doesn't, she will never know how truly grateful I am for her offer. An offer that will save my child's life. An opportunity to keep him from rely on machines. The gift to see and experience many firsts in his life post transplant - first banana, first bath, first steps. Without my mother/his grandma...he wouldn't be able to do any of those. And with the way his blood pressure is rising so high...he's not tolerating dialysis very well at all anymore. Going on 9 months of hemo next week! I am also thankful to all the other friends (well - they are family to me) that offered to be tested. You three "sisters" know who you are. I am in awe of your willingness to sacrifice time away from your family and the discomfort of surgery to help my little boy. I'm also thankful that your gift isn't necessary right now, but please know how it touched me.
Well, Matthew and William are both beating up on the dog. One's banging her head and the other is grabbing her tail. Better go save the furry daughter. I'll keep everyone posted the transplant front. Please say prayers for my mother's health and the doctor's counsel. Thank you!