The test

I was one of "those" students. The few that actually cared about my grades. I would enter into friendly competitions with my friends about scores on exams. I had a photographic memory that when I looked at a couple of pages prior to a test, would ensure an A+. If I was too busy flirting (which happened a LOT) then I would scoot by with an A-. Never had test anxiety and always the first to turn it back in to the teacher. Yep...I was a nerd. :)
Since I've entered the "real" world, I've never had to solve a physics problem without the aid of a formula. I've never had to multiply by decimals without a calculator in hand. I can easily use spell check or my co-worker if I come across a word that I can't remember the correct spelling. Frankly, the education system taught me many things (stoichiometry anyone?), but I wasn't prepared for the BIG test.
A test from God. A test I have unfortunately failed.
Often in my life, since my son Matthew's birth, I feel like I failed him in some way. He was born without a urethra, and it caused irreversible kidney damage when his urine back-flowed while in utero. I even went as far as blaming God for not making me strong enough to make him perfectly, without this defect that would be life changing and one day....may be life ending.
Due to this one little defect, a missing link of tubing that is connected to the bladder, my son has endured 26 surgeries in his short 3 years of life, including a kidney transplant. He had a beginning at the bladder and an end at the tip, but nothing in the middle. I was told the doctors might be able to reconstruct a urethra for him one day, but it would be complicated and might not work.
Through out these past four years (well, 4 years in 3 days - as that is the day we found out about Matthew's condition during my pregnancy) our family has been tested. I've been tested. Tested to give up control (a HUGE thing for me!) and as I have said often "let go, and let God". I had THOUGHT I had done this.
I have given my son's life to God. Both before and after his birth. When I failed the medical exams for being a donor to Matthew, I once again left it up to God. And WOW! He showed me He really did know better! I thought life and death was enough. Now I've learned it isn't.
Yesterday, my son was scheduled to have another operation. Shortly after beginning, I was told to meet the surgeon in the consult room. The doctor informed me they didn't do the surgery as planned, purely because there now wasn't a need. Matthew has GROWN a fully functioning and complete urethra! The doctor, the same one that has been working on my son since birth, couldn't explain what had happened. He just shook his head and smiled. He said if he had only looked once before, then maybe he might have missed something. But he's looked MANY times - several on ultrasound, VCUG scans and even opening him up to do exploratory surgery...nothing. Nothing even in October when Matthew had his last scan.
Now all of a sudden - something!
Something fully healed and perfectly made.
Just how my son was made. Just how God made my son.
I know understand my test. My feeling of failure was purely a selfish and unnecessary issue with my own sense of pride. I didn't fail him. God made him in a way to show me that...that's it's not about me! It never was. God made Matthew to do things that the doctors said he never could. God made Matthew to take matters in his own hands, inside his own body to heal and prove them wrong.
That things can't always be explained by science and medicine...somethings are just left to God's timing. Perfect timing. For a perfect boy...that was perfectly created. And I am perfectly thrilled to know I had absolutely no part in this miraculous healing.

Going with the Woe

Bad things happen to good people. Things not in our control; things that leave us shaking our heads; things that make us ask "why my family?". A five year old little boy is dying from cancer. Cancer caused by the medicines his body needed to keep his transplanted kidney. There is a fifteen year old daughter and sister, who was unable to attend her parents' and siblings' funeral because she was still hospitalized in Florida while they were buried back home in metro Atlanta. Random acts of violence, natural disasters and even house fires turn many families lives and dreams upside down.
It would be easy to give into the "woe is me" mentality. I've done it. Woe is me for having to watch my son go through so much. Woe is me for having to spend so much time away from my husband and other son, because my baby needs me right now. Woe is me, another year without a vacation...gotta save that many for medical co-pays. Then I hear about a child losing their fight... and once again I am grateful.
It shouldn't be that way! We should always be grateful! It shouldn't take bad news to make us feel happier about our life and all the blessings in it.
I know there is a greater certainty that I will outlive my son.
That knowledge has left me breathless and broken-hearted. I can't count the times I have crumbled in the middle of the night, wracked by sobs of sorrow. The only balm I have - is right now. Whenever my fear creeps in, the uncertainty seeps through or the darkness covers my rays of happiness...I just look at him. And I'm grateful.
Grateful to have this experience. Grateful for whatever time we have together, whether it be counted in days or decades...it's more time than I was told we would have before he was born.
So instead of letting the "woes" build up - we let them go. Turning woe into wonder, sorrow into smiles and fear into faith. Faith that we will handle anything that comes our way. Smiles that we made it together this far. Wonder in the normal, everyday experiences we get to share.
If my son has to fight bigger battles ahead and tells me he is tired, then I will let him go...and I won't have any "woe". There will only be the joy of what we had.

twenty four

24 - the number of times my son has been wheeled into the OR.
4-6 - the number of hours I will wait for this particularly surgery to be finished.
2 - the number of nights we "should" be staying
4 - the number of nights I packed to stay ;)
3:00 - when we turn his feed pump (filled with pedialyte) off tonight
7:15 - when they will begin to give my son his chance of "normal"

Does this get easier? Yes, it actually does.
Does this get hardier? Yes, it actually does.

I know how to calm my son down; I know what to expect from him and from the hospital staff. I know I have a say in the care and treatment of my son. I know I have the prayers and thoughts of my friends and family. They lift me up, inspiring me to go a little more past exhaustion and despair - to get to the other side where I find joy and peace.
I also know Matthew's anxiety will be terrible. I know he will shriek, throw things, try to hurt himself and continually ask "why" and telling me "no". I know he will be in pain, physically and mentally. I know he will not sleep because he will be frightened, and I know tomorrow night will be a long night of no sleep for me either. That's ok - that's what mommy's are for after all.
Knowing what is to be expected, does not mean I know everything that will happen. Complications, set backs, infections or any other number of issues that arise. Of those, I'm terrified. I don't know why I haven't been frightened by them before...I guess everything was so cut and dry, black and white back then. None of his surgeries have been "elective". Though this one is not "elective" either - it is to keep his kidney is better shape long term without the reflux and high pressure damaging it - it just seems more discretionary...like we have more a choice to do this one or not.
And because of that, I'm having a hard time with the risks. Before, if something went wrong (and it often did) it was always better than the alternative of not having the surgery done...which ultimately would have led to death. Now, it leads to a slow progression of kidney failure. But honestly...isn't that what everyone with a kidney transplant is experiencing? You just wait til your labs are bad enough to say you need to start making calls again and they stick you on a list? I don't know. I'm not scared for him per se... I think I'm actually scared for me!
I've never been scared for me! I'm always the nut case running up and down the halls laughing that we are "one more surgery closer to transplant". During transplant, the days leading up to it and the day of, NO butterflies! Just pure gratitude and peace! Now - I'm a bundle of nerves! Go figure! It only took 24 to get me there!

I wanted to include a song that some of my "kidney moms" lean on and rely on (since 90% of our kidney babies are boys) I just wanted to share it with you and ask for your prayers for a smooth surgery, a complication free recovery and a very short hospital stay. Please pray for Matthew's mind and soul - those are the scars that don't show, but run deepest and worry me the most. Thank you.
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related
http://www.youtube.com/watch?v=3YK3JR-4Wpg&feature=related

Three years

This time three years ago, I was in route from Cartersville Medical Center to Northside Hospital in Atlanta via ambulance. My youngest son, Matthew, was born today. Born into sickness and pain and uncertainty. I look back at my first born son's birthday and think of that day with such fond memories, immediately thrown back into the warm fuzzies and feelings of awe and wonder as we became parents for the first time. No one can describe that feeling until you feel it - seeing your first child born - wow!
Once I found out I was pregnant with our second child, I was over the moon. I couldn't wait to decorate the nursery, look through baby names and see how William reacted to my growing belly. Well, we didn't get the nursery painted and ready until Matthew was already 6 weeks old. I looked up names with special meanings that would "look good" on a grave marker. I had to get help from the doctors to have a "baby bump" showing in my belly. This pregnancy that I was excited so excited about did NOT turn out how I had expected. Being told terminate your pregnancy by three different doctors and even told by "well-meaning" family and friends that "maybe it just wasn't meant to be - don't intervene too much, God will heal him in heaven", it just strengthened my resolve to get Matthew here alive.
Then he arrived. I didn't feel the joy and peace I had felt with William. I feel sad to admit that. :( I felt relief I got him here alive. I felt grateful he was in good hands with the hospital staff. And I felt scared about the medical procedures, tests and surgeries he was facing his first few days of life - nearly 2 months before he was even supposed to arrive.
I met Matthew via a polaroid picture. The doctors telling me all his lab, ultrasound and intervention results. I had no clue what they were saying - it was a different language to me at the time. His lungs were small, his bladder was huge, and his kidney didn't function even a small percentage. I cried; I cried until I met him face to face the following day when he was on his way to a more intensive care NICU that could handle his needs. I saw him and all the torment that was bottled up inside started to dissipate.
He was here. He had made it. And I would make sure I gave him his re-birthday. A day to be born again into health. I would make sure I fixed whatever I had messed up when I was making him in my body. I know I'm told often it wasn't me...but I still can't shake that. I still feel tremendous amounts of guilt of what he has endured because my body failed me, failed him. But now he has his re-birthday; his new kidney; his new life. And we are able to celebrate three years with our son. Three years that started off with so much anxiety and now filled with so much happiness.
Happy birthday to my Matthew. My heart and soul. My miracle. My precious, strong fighter.

Courage

"Often the real test of courage is not to die, but to live" - Conte Vittorio Alfieri. I see this courage everyday in Matthew. He has so much to be afraid of and anxious about, but he does his best and puts on a brave face when all is said and done. Even this afternoon, after being strapped down, so upset he threw up and covered in a sheen of sweat due to his screaming and thrashing about, when it was over he smiled, waved and said "thank you for the owie". My brave little boy.
I wish I was as strong as him, as brave.
I've been told that while it takes courage to achieve greatness, that it takes more courage to find fulfillment in being ordinary. Though I have no doubts that Matthew is extraordinary, I'd be thrilled for him to accomplish "ordinary" things. Matthew had a procedure today to find out how close we are to "ordinary"...we're not that close unfortunately. We still have a long way to go it seems. But (and without any intention of being a Miley Cyrus wanna-be) it's more rewarding to take the scenic route to your outcome than the direct approach.
We've take the scenic route SO many times before...actually...EVERY time before now that I think about it! Every time we had a surgery with one goal or outcome in mind, another one was thrown in our way that came out of left field. Everything "easy" was complicated, but because of that...it got easier. Does that make any sense? That even though it was hard, it was better to go through it that way; either to teach us a lesson in patience, compassion or that it really does all work out for the best in the end. I wonder what lesson we will learn out of this little detour?
I'll tell you what I know now: that it is ok to be angry at the way things are, as long as you have the courage to look ahead - knowing that they will not always be that way. We're holding on to hope and courage here; I'm lucky to have such a great teacher such as Matthew to guide me.

Healing

Some of the kidney momma friends have been talking about guilt. The guilt we harbor with our kidney kids. Naturally all parents have guilt - too much tv, too much junk food, not enough one on one time. It's in the fine print of the pregnancy books (when the little bundle is handed to you, with him/her comes a life time of guilt for not doing enough or for over-indulging too much) With Matthew all of that was magnified times 1,000!
I went through my pregnancy with an overwhelming feeling that I did this to him. Had I not over-exerted myself (moved twice the first 3 months of pregnancy), then my body could have handled making a little person. I know that's not true, but that's still what was in my head...and sometimes still sneaks back in every once in a blue moon. Guilt can eat at you, make you depressed and cloud your mind with poisonous doom and gloom.
I have a confession that I have NEVER told anyone before. Two people very close to me announced their pregnancies within a month of me giving birth to Matthew. Granted - he was a bit early! But even though I was happy for them, I was sad for me. I hope I didn't show that side, I tried my hardest not to let it out. I mourned the fact that I didn't get to have a "happy" pregnancy. My pregnancy was full of uncertainty. I didn't register for gifts, I didn't pick out clothes to bring my baby home, I didn't even paint his room or get his crib ready until he was 6 weeks old and getting ready to come home. I wish I had been able to see my baby when he was born; he was whisked away.
After Matthew's arrival, I had trouble going into stores, especially stores with baby departments. Target would reduce me to tears when I walked by the bath toys that Matthew could not play with due to his dialysis catheters. I loathed the grocery store baby aisle - being forced to walk by the baby food my son wouldn't (and couldn't) eat to get to the diapers. While at the library, hearing another mom complain that her child was growing like a weed and soon wouldn't have anything to wear. My child stayed in 3-6 month clothing for 5 months. 9-12 month clothing for 8 months. I prayed he would outgrow something.
Then transplant happened and as Matthew started to heal - so did I. I didn't realize how far I had come until just recently. I'm ready to hold babies again (other people's - not wanting my own!), I'm ready to share Matthew's story without tearing up. My faith was tested and my heart purified. My friends have been whittled down to true friends that will stand by me now matter what. My eyes have been opened to a whole new way of life. And I have been given that most precious knowledge that no matter what - life is sacred and wonderful...even if at that moment it down right stinks.
I'm happy. Two years ago, I never thought I would be happy again. But I am - truly happy...for everything. Happy, healed, whole - like Matthew :)

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?

9 lives and outfits

This time two years ago, I was finally breathing a sigh of relief. We had received a call at 6am saying we needed to come down to the NICU right away, Matthew had taken a turn. Just a couple days prior we had started getting the paper work ready to begin our PD training to go home, so this call kind of came out of left field. I quickly called Ian's parents to come get William (as they live 5 miles from us) and ran to the car.

Matthew, the week before he got sick.


Let me back up a bit. Matthew has more lives than a cat is supposed to...and technically - he'd already used them all up during the pregnancy itself! It was both awesome and terrifying to go in for fetal surgeries. To watch my little 12oz son be "put to sleep" and have a catheter placed through his stomach into his bladder. I couldn't stop watching the monitor, partly because I'm a science geek and LOVE stuff like that, but mainly because I'm a mom and I wanted to be with my son every step of the way. If the surgery caused him to bleed out, (which the last one he hemorrhaged from causing them to stop surgeries all together) I wanted to be there for him (as best as I could) singing, talking, stroking my belly until his little heart stopped blinking on the screen. I was both excited and nervous to see him every time I walked in the door. I had two ultrasounds (sometimes three) every week of my pregnancy from week 16 to week 31. I just didn't know if I'd see our baby happily wiggling (because that's all you can do with no fluid to move it) or our baby eternally sleeping. His birth itself: all the complications with the pregnancy, oversized bladder not leaving a lot of extra room for his lung/heart development, low to no amniotic fluid except for a couple of days each week when I'd get an infusion and let's just add on a prolapsed cord while we are at it ok! Let's just say his guardian angel is working overtime!
We made it to Scottish Rite and doctors were surrounding his isolette. He was limp, unresponsive and whiter than snow. He was back on oxygen and his heart rate was everywhere! At one point, he coded while I was holding him and the nurses had to physically restart his heart in my arms. I think I went into shock because I took it in very calmly. Peritonitis had gone septic. Being only at the gestational age of 36 weeks (or 4 weeks before he was supposed to be born) probably didn't help as he had no reserves to fight with.
Since then Matthew has been septic three times, all causing the same reactions but without physically restarting his heart luckily. Though they did bring up a code cart twice during hemo when he went into septic shock. Another time they were set to replace his hemodialysis catheter, but his potassium was just too high to operate. At that time the kayexlate (really gross thick, grainy and sickeningly sweet medicine that binds to potassium in your body) wasn't working on its own any more. He had had 4 dose in 24 hours and his potassium only increased. So we had no choice but to go ahead with the surgery. The surgeon told me to have family near, their was a higher chance that he wouldn't make it than him actually pulling through. That was the only time I cried in the OR holding area when they came and took him from my arms. I didn't know if the next time I held him if he would be warm or cool.

Here he is back in my arms that afternoon:


Since then he has fought off congestive heart failure, outrageous blood pressures that are high enough to send a grown man into a stroke, line infections, meningitis and encephalitis. All in a days work for him. The nurses often remark how calm I am about this, how they never see me break down. I don't let myself break down until that situation is over. When it is over, we get discharged and I run straight for the shower. I turn the water to scalding, my skin is swollen, red and tender...and I cry. I allow myself five minutes to get it out and over with. I don't have time to dwell. If things still need to be said, I talk to my husband or a friend. I write a blog or a journal I keep bedside. It used to help when I would lots of nightmares during the last couple months of hemodialysis when they said my son was fading. Yes, lots of nightmare...
But in the end, my dream has come true. My boy lives to fight another fight another day. I remain stoic to all things medical, he remains strong. It works for us.
I've met many people in the past two years, when my small little sheltered life of all babies are happy and healthy was opened to a much broader range. Filled with more love and more pain than I could have ever imagined. I've been witness to both miracles and tragedies and they both haunt me in varying degrees.
For every size of clothing Matthew has grown into, I've picked him out something to be buried in. Morbid? Perhaps...but I knew I wouldn't be able to cope if the time came. I have outfits from preemie size up to 24 months. Only twice did I actually pull them out thinking I really was going to use them in the next day or two. Matthew has grown into a new size - 2T. (no more baby clothes) :( And I have NOT picked out an outfit. I don't know why the sudden change in my behavior. Just a month ago we had a scare with his brain swelling up! I think I'm finally at peace with EVERYTHING! I'm finally accepting what God has given me, given my son to deal with and I'm OK with it. I will no longer prepare for the worst case scenario. I will handle things as they come, like all parents do.
Two days ago, our little family joined our extended family at Chick fil a for the first time in almost a year. I took Matthew onto the playground there. He isn't supposed to be around that many children, especially with his biopsy coming up (I purelled that kid until he was wet and reeked of alcohol!) He went down his first slide. He looked at me - "gen" he said with a smile. On the top of the slide he said "I luv slide" and then "weee-ed" his way down.
The only outfits I will pick out will be which ones he can get dirty as he plays and lives.

Escape

I am proudly announcing that I have seen the new Twilight movie 3 times in one week. :) Yes, I love it and yes I will be 31 in less than a month. It's not so much the movies, although they are entertaining and the effects are getting better with each movie (in my opinion), I'm in love with the books.
I never was a real reader when I was younger. I would read the necessary books required by the state of Georgia and the education system, but other than that...I wouldn't really read for pleasure. Until I was on bed rest with Matthew. Fortunately for me (and the rest of my family) bed rest only lasted three months (helps when someone arrives 2 months before they were supposed to also - really cuts down the couch time).
My mother had just started her membership into a neighborhood book club. After the news of Matthew's condition, I wanted to do something that kept me from thinking and dwelling on it. It's hard wondering if every minute of the day if your child is alive or has suffocated due to cord compression and lack of amniotic fluid. Needless to say, it ends up taking a toll on your spirit. I had to escape. My mother mentioned a book they had just finished reading in her club - The Other Boleyn Girl. What did I have to lose? I gave it a try.
I got sucked into the pages of drama, lust and death in light of the royal house. Seeing history unfold in a new light about an old story everyone knew. It helped me forget my problems for a moment. I needed that moment; it enabled me to breathe without the pain in my chest and smile without the tears coming to my eyes. I escaped my own drama of life and quickly turned to the other books in the series to keep the masquerade of normalcy up for others to see.
Then Matthew was born. My world turned upside down. Everything I knew about caring for a baby was thrown out the window. He was special with unique needs. How many mothers force upwards for 14 medicines into their two month old, decant formula because the minerals (even in kidney friendly formula) are too high, and create a clean/sterile environment to pulse dialysate into a 4 pound baby for 12 hrs? I don't see too many hands going up... I had to unlearn everything I had learned with William. This kept me busy.
Even though I was busy, the quiet moments would be hard. I still had my child to hold and to love, but mourned the "normal" things in life I wouldn't get to do with him. I had to grieve for the loss of feeding my son. One of the hardest days was when I was told my son was slowly starving himself to death. He was malnourished and due to that developing nutrition deficiencies that are only seen in 3rd world countries. I was told that with his case of rickets - they would have to go in and individually shave each bone so he would be able to walk. Many times I wondered if I had pushed too hard to keep him alive in utero to let him endure so much pain on the outside. It ate away at me.
My bad month was October 2008. Matthew had 6 procedures that luckily were grouped into only 4 surgeries that month. He was NPO 7 times for 12 hours for longer. At his heaviest - he weighed just shy of 10 pounds. He was 4 months old. NPO nights were the worst, I didn't sleep because he didn't sleep. How could he when his stomach was knotting up in hunger? William was 16 pounds at 4 months and lapping up cereals and stage one baby food. Thirty two ounces of formula were NOT enough for him. Matthew would only get 3 oz of formula in before he tired out and went to sleep, waking up 2 hours later for another go. One night he was NPO for surgery the next morning that was put off due to his calcium levels. Twice he was NPO because his potassium was sky high and peritoneal dialysis wasn't working any longer. He was not allowed even the decanted formula because even a few mils of potassium could trigger cardiac arrest. He went 22 hrs that day without taking any food in - I still tear up thinking about his screams.
Yes, October was bad for me. Seeing my son's smooth baby skin transformed into landmines of holes as the surgeons played hopscotch with his PD catheter. And finally demanding that they allow me to feed my son in the only way that would guarantee him nutrition, via his g-tube. I would leave our small room once in the morning when our favorite nurse would come in while Matthew napped and scampered downstairs to eat a donut. I was back in 10 minutes and it only took that long because it was about an 8 minute hike going and coming from the cafeteria. My world existed in that small 6x9 room. My window overlooking the helicopter landing site. I hated hearing that helicopter - I hated what it meant. Some child and their family were going through things much worse than we were.
I stayed by Matthew's side, because I felt it was my job to monitor him, feed him, bathe him. Hold him when his IV blew out, bicycle his legs when the gas from the surgeries got to be too much, and calm him back to sleep after he had cried himself to a state of exhaustion. I needed to get out, but I couldn't leave him. So, I escaped once again.
My mother brought me the newest book they had read in her book club - Twilight. I was HOOKED immediately. Engrossed in the romance, fantasy and teen angst. I was swept into yet another world, this one full of possibilities that one can create in their own mind and world of make believe. I devoured all four books in the three weeks we spent at the hospital. Like I said, I didn't want to leave Matthew physically, but for my own health and heart I had to escape somehow. It through me back to my own teenage years when everything was possible and I was still in search of my white knight. (sparkling skin was optional) ;)
People wonder why I am so engrossed in this saga, why I see the movies over and over...read the books again and again. Because it helps me to escape reality. I think we all need that from time to time. Mommies of special needs kids - maybe a little more than most. It's not just Team Edward or Team Jacob (though I do have my preference!), it's about checking out for an hour so that I can be there for the other 23 hours of day and continue being strong. My kids need me, all kids need their parents. And all parents need their me time. These books helped me when my me time was non-existent, but highly necessary.
Ian is leaving...I don't know when...for the gulf coast soon. I will escape again when I am making my way through single parenthood. Finding time to schedule clinic visits, make therapy appointments and get William to preschool on time. Oh yes, I will escape and I will be a better mother for it.

Wordless Wednesday

Don't leave the baby powder where they can reach it!

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.

Too much

So I've been wondering...have I gone too far with my son? I look at him right this minute and just say that's absurd. He's SO happy, he's SO healthy! How can you doubt yourself Karen? Well, pretty easily actually. I am a mom, and mom's always wonder if they have done the best for their children in every regard. And at the moment...I'm wondering if I've done too much.

Yeah, after my impromptu nap last night at 8pm...I was wide awake by 11pm to watch Private Practice (the spin off of Grey's Anantomy). I'm a junkie to medical drama where adults act like teenagers getting mixed up in each other's love lives. It's a flaw I've learned to embrace. :) But on that episode there were parents of a tiny 25 weeker with lots of complications. The parents were holding out on hope that their child would get to live a normal life one day if they just kept fighting. The doctors didn't agree. They were suggesting medical assistance be stopped. In the end, it was. The parents finally got to hold their baby free of wires and just let him feel love.

Now no way can I compare my son's medical journey to one so severe as what this little guy was facing...but the similarities of what the doctors said kind of brought it home. I was told to terminate before he was even born and I resisted and fought for him. I was told by FAMILY and FRIENDS that said too much was being done...why don't I just stop once he was born. I've had to push the medical community, transplant team and home healthcare personnel so they would realize Matthew was a person. Not a number, a statistic or a nameless being. He was MY boy and I wanted the best for him.

I also wanted the best for me. I wanted Matthew here. I kept reasoning that if God wanted to take him...he'd do it anyway. During surgery, during sepsis or even while driving over ice to get him to hemodialysis. He's still here. I think he has a big purpose on this earth...I can't wait to find out what it is. But also, I wonder if my selfishness is what has kept him going. Did I "taint" his outcome due to my pushiness?

If I hadn't gone along with the interventions and fetal surgeries...Matthew wouldn't be here. There would be no "well, a miracle could happen". You can't grow a urethra if you don't have one. His lungs would not have formed, his heart would be misshapen and his body would have curled in over itself from lack of fluid and space to stretch out. Did I "play God" in advocating for my son? Did I push the medical community to keep him alive when according to their books, he should be dead? Who am I to put my son through 20 surgeries just so I can hear his giggles?

I'm his mom. I wouldn't change a thing. God gave us the tools of surgery, dialysis, and medicine to make things better. They work with God, because through Him all things are possible. My son is here. He shouldn't be. He's used up is "nine lives" and is on number 11 right now. God reaffirms that to me through people like Marie. Through donors everywhere, nurses, doctors, surgeons, pharmacists. God gave them their gifts for a reason. He gave me my son for a reason. I am grateful for both.

I am throwing away the receipt, no exchange necessary for Matthew. Thank you God for the perfect gift. :)

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.

Miracles

Miracles...I don't use that term loosely. Pretty much the only time I "regularly" say miracle is when referring to a certain Christmas movie with that word in the title. So, what is a miracle: 1. an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause. or 2. such an effect or event manifesting or considered as a work of God.
Earlier this summer, my husband's grandfather was diagnosed with a rare bile duct cancer, cholangiocarcinoma. He was given his "time frame" and told to enjoy his family. This cancer was often too hard to fight.
Last week he went to the doctor and had a scan. The previous scan he had had a little over month ago showed that the chemo was helping the tumors (he had many small tumors everywhere in his liver too) not grow, but they weren't shrinking either. This scan showed - NO tumors at all...even in his bile duct! Needless to say the doctors (and all of us too) were shocked and thrilled. Our family miracle was celebrated this weekend when the boys got to play with their great-grandfather). William always asked him if he was still sick every time he saw him, but this time grandaddy finally said "all better". :)
I can't wait to finally report Matthew is "all better". We are still waiting on our miracle, but have received SO many. It is so odd that yesterday I was talking to a friend about how all the surgeries/treatments that were supposed to help Matthew - ended up causing some sort of damage either short or long term. But all the surgeries/procedures that were likely to kill him - were the ones that saved his life.
Please God, as we come up to the one year anniversary of hemodialysis (another statistic that most babies do not live to see), I ask that You protect my son and keep the doctors wise. Keep our potential living donor (that finished her phone interview from Emory yesterday!) in Your embrace and protection. I really want to have a New Year's resolution of keeping my boy's gently used kidney healthy. I know things are at Your time, and I am waiting. Waiting both anxiously and patiently for a miracle.

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.

Five for Friday - Matthew style. :)

OK, I'm normally involved in a blog carnival that Mama M hostesses on Fridays every week, but this week I'm kind of stepping out on my own. (just for one week though and to answer ONE question - COKE!! It's all about the Coke in the south (especially in Hot-lanta were the World of Coke is located!). I am just listing 5 things I am thankful for. Yesterday, I got some bad news that kind of put a damper on my spirits. And I'm really a happy, optimistic person - yeah...not so much 24 hrs ago! :( But I've accepted the hand that has been dealt and all is well on the Karen front once again. :) So, without any more of my rambling (I ALWAYS end up doing that!) here's my friday five:

1. I am thankful that in my attempt at saving Matthew's life, he just turned around and probably saved mine. I found out I have stage 2 kidney disease only because I was tested to be his donor. I don't have blood pressure problems (hello - 105/65 here!), no protein in my urine, no excess sugar, no "warning" signs of an issue. And the fact is, most warning signs are not shown until it is too late. Kidney disease is progressive...you do not get function back. But I can now keep appointments with my nephrologists, change my diet and maintain kidney function as much as possible. Thanks for looking after your momma Matthew. :)

2. I am thankful that I have such wonderful family and friends. Family that are willing to get tested, friends that share our story with others and everyone that prayers for my son. Prayers are the most important gift you can give us anytime. We don't need money, clothes, food...we like the free things - laughter, hugs and prayers. :) We greedily take those and luckily we are surrounded by people who happily indulge us. Thank you!

3. I am thankful for Matthew. He is here and he is chewing on my couch. Not necessarily thrilled with the soured spit smell that will rise from that this evening, but he's here to be able to leave a little puddle of drool. He is crawling (something they said he wouldn't do), he is laughing (something I can't get enough of), and he is tooting (something I could do without). But he is HERE, NOW, WITH ME! Some mom's don't get that chance. I am so blessed. If I get to spend one more month or 1,000 more months...I have been made a better person because of him.

4. I am thankful for William. I often feel like William gets the short end of the stick with all the goings and comings of Matthew. But then I realize that William gets compassion, patience and will learn not to judge others based on their "label" because of Matthew. WOW! That's pretty cool! He is SO funny and super snuggly. He's our handy man helper-outer. Our go-getter introducer that says hi in the grocery store or the library. He's our car fanatic that introduced us to the special people like Mater, Doc, Sally and of course Lightening McQueen. Life would just be a bit duller without him. He colors our world. :)

5. I am thankful for my husband, Ian. Without him I would have drowned in sadness when we were told on three separate occasions to terminate our child. I would never have understood and appreciated the military wives that are left behind to be mother and father, husband and wife, lasagna maker and lawn mower. I met a GREAT group of women (and men) through him and the Coast Guard. He has stepped up and over the boundary lines set forth by society and became "house wife" for nearly 7 months when we went without a paycheck to our name and me laid up on the couch with fetal surgeries and then a c-section. He is willing to give up his current dream job and search for "brotherhood" in the fire department to begin testing for our son's kidney transplant. This October is our ten year "dating" anniversary. God bless the man that could put up with me that long. ;) I love him!

Of course there are many more, but I am keeping with the Five theme. So, more to come! Have a happy weekend all! Please still check out all the other women who followed the rules from Mama M. And sorry I stepped out...just had to get these down. :)