Tuesday, September 28, 2010

Choosing the hard way

I chose the hard way. How much simpler life would be if I never had to worry about PD, hemo, surgeries, medicines and the like. We would have traveled, explored and spent more time together as a family. But something would have been missing. If I had agreed to terminate my pregnancy...if I had a do not resuscitate order in the NICU...if we didn't have someone step forward to donate her kidney - life would be different.
We chose the hard way, the parents of our renal warriors. Seeing our child in pain, waiting out numerous surgeries and procedures, staying vigilant by his hospital bedside and praying. We have fought for our child's right to take his first breath. The hard way comes with unbelievable pain, anxiety and fear.
The hard way also is lined with hope, love and trust, but sometimes it is hard to see.
When your spouse dies, you are referred to as a widow/widower. When both sets of parents die, a child is called an orphan. There is no name for parents when their child dies - there are no words that can describe it. A friend of mine has lost her son to a long battle of end stage kidney disease. I have no words.
She chose the hard way and has now falling on harder times. But in between she had many beautiful moments. Moments she will cherish her whole lifetime until she can be with him again. And when she is, he will be whole and perfect for the first time.
Sweet Aidan flies into heaven lifted by his mother's love and holding on to his father's kidney. Their love will grow for their son as he now becomes their protector, watching over them.
His way of saying thank you for believing in me, for fighting for me and for loving me SO much to let me go home.
Please take a moment and say a special prayer for this grieving family: pray that the hole in their hearts mend. Give them the strength to carry on these next few days and for the many years following. Bless them with the comfort of knowing they did ALL they could do and to NEVER doubt that. Help them to see happier times and to hold onto Aidan's love.

Sunday, September 26, 2010

And the Earth keeps turning

Have you ever had one of those moments when life stands still? Perhaps as you exchange vows with your soulmate. Gaze at the flickering heartbeat during an ultrasound. Or raise your glass to toast your grandparents 60th wedding anniversary. What wonderful times, times we wish we could slow down and savor as they speed past us leaving an imprint in our souls.
Then comes the times that are slow, and sometimes quite painful. Where your world stops, but everyone else keeps going. I have felt that numerous times - I think we all have. Either experiencing a fear so great or a grief so pure. A time when you wonder as you look out of the hospital window, unto the street below, is anyone as sad or as frightened as I am? Is that couple arguing about a missed turn a few streets backs? Perhaps that family is on their way to drop by at a friend's house? Maybe that guy is heading home from a late shift at the office. Their world is still spinning. Life goes on.
When Matthew has been facing a rough patch, I log on to the computer to update my friends. Opening my email account I would see funny jokes that had been forwarded, the "gifts" sent to my facebook account for whichever game I was hooked on at the time, and all the newsletters/recaps from the forums I was a part of. I would sit in silence, knowing that the life was continuing for others while my son's life hung in the balance. I could see it enfolding in front of me...and yet I was numb to it.
I didn't give a damn about getting a can of fuel for my farm or what the priest and rabbi said upon entering the bar...I just wanted my son to be better and out of danger.
I guess if you have never been there, it is hard to put yourself in that place. It sucks to the point...that I just can't explain in words...only a weary sigh. But I am asking you to put yourself in that place right now.
A very special kidney warrior is fighting for his life tonight. He has been through so much and has always come out a champion. Now he needs us to rally behind him and lift him up. Pray for healing, strength, peace and wisdom for sweet Aidan, his family and his doctors. The power of pray can move mountains - we just need it to move a dialysis catheter into place to give this sweet boy a chance.
As the Earth turns, I ask you to turn your face towards heaven and pray.

Tuesday, September 21, 2010

The best medicine

Our little family has been through lots of medicines and supplements - especially in the past nearly three years (when I found out I was pregnant). Some work wonders right away, others take some time for the body to adjust to it. A lucky few have no side effects (or no side effects worth mentioning at least) and others....AAAAHHHHHH! Do you want to know what my favorite is?
A smile. From a stranger in the hospital halls, a doctor that is just as frustrated as I am, my children (their smiles light up my entire life) or even an old photograph of simpler times with smiling friends. Smiles are therapeutic.

William - 8 months old as Charlie Brown

Have you ever had the thought that things just possibly can't get any worse? Ask that to the parents that buried their child last week; the parents in the PICU today watching the clock and hoping they are granted another hour to hear their child's soft breath. Maybe this is just a sensitive subject for me in general. I've invited myself to my own pity party a couple of times for my own son's situation. Luckily, I just make an appearance - see the party is really a drag - and then get the Hell out of there! I don't know...even though I know life has been rough for my son sometimes...I just can't shake the feeling of "wow - how lucky are we!"

Matthew's last surgery and hospitalization before transplant

Two of our kidney friends are having a rough time at the moment. It affects me...maybe more than it should. But I can't help but put myself in their shoes...knowing that one day...it could easily be my son. I think making the hospital rounds so often in a young life, you do feel a connection and an empathy that perhaps others do not. I know I didn't - until it happened to me. When William was sick with a high fever and vomiting at 10 months old - I just thought the world needed to stop for us on the way to the ER. Now I see I overreacted a wee bit. ;) But it was my child in distress. Now when that happens, I offer up a little praise that it's just a virus and will run its course, happy to know it isn't something scary!
And when I find myself getting overwhelmed - I smile to myself. I might look a bit goofy to someone passing by, but I'm pretty goofy looking naturally already. ;) I have smiled while rocking a screaming, hungry and mighty angry 2 month old that was waiting for his turn in the OR, because it was one step closer to our goal of transplant. I've smiled through the vaccines of my first born, knowing all the pain he would be kept from in the future with just a couple of tiny pricks. I've smiled as my husband has boarded a cutter in the coast guard during our first year of marriage, because I knew eventually he would come back. I've smiled as I have visited my grandparents' graves, because now they are truly at peace.

Yes, smiling is often underrated. It helps. It heals. It doesn't take away all of the pain, but it acts as a rainbow during the storm. The promise that one day, the smile will be real...even if you think it won't. Just smile.

Wednesday, September 1, 2010

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?

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