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?