Tuesday, February 26, 2013

Our New Normal

As most of you probably know, Max and Al returned home last Friday afternoon.  We had been holding our breath and hoping but not wanting to 'get our hopes up' at the same time for about a week.  We knew it was possible, then it started looking likely but I will tell you that it was not until I got the text that they had boarded the plane where I really believed it was happening!!  They came home, and Al's sister Emily came as well to help get everyone adjusted to our new normal.  It was a wonderful weekend, Max was so smiley, he was talking and cooing away at Addie (who basically ignored him) and we had fun just all being together again.  I was sitting around the table on Saturday morning eating hot Shipley's donuts with Addie in her high chair and Max in his wheelchair and everyone smiling and I just kept thinking, this is what we have been dreaming of, this is what we have been working towards and it is here, and it is wonderful!

We have spent the last two years looking to transplant as our goal and our hope and it such a bizarre and wonderful feeling to be there, to have arrived as this long awaited for end point finally be here.  This is a poor analogy and I would hesitate to use it had Al himself not used it many times... but it is kinda like preparing for a wedding.  It is so much preparation, something you have been planning and dreaming of and organizing for such a long time and then it happens and your life changes and you come home from your honeymoon and you think 'ok we are married! wow, now what?' and you start figuring out the reality of what exactly will daily life look like now and what do you spend all your time thinking about and planning and obsessing over now that the big event has passed.  Now I would like to put a disclaimer on this comparison that my wedding day was the happiest day of my life and the most beautiful memoral wonderful experience and in no ways really similar to the terrifying, stressful, sad experience we had watching Max suffer on the ventilator for days in December with his transplant.  You walk away from a wedding with precious memories and images you try to hold on to and we walk away from this transplant with a fair amount of post traumatic stress disorder and a lot of images we long to forget.  BUT, both were life changing and wonderful important changes and the comparison is just to say that we are in that place of figuring out a new wonderful normal and not knowing exactly what to 'plan' next.  And just like a newly wed couple quickly relaxes into the calm of not having anything to plan, we are adjusting to this novel exciting idea that there are no big surgeries, no crises awaiting and that we can just live in the moment and enjoy our time together and just live each day without the need to work towards something.

There are so many wonderful things about having no one on dialysis.  It feels so freeing to be able to plan things without considering how it will impact dialysis.  We have freed our house of so many medical supplies that it almost looks like a home and not a hospital again!  There are just less things that can go wrong, less problems to watch for.  And much more time together, and more smiles and happiness.  Transplanting Max and Addie was the best decision we have ever made.  We said going in 'No Regrets' and Al and I reminded each other of this when the days were hard either with Max being sick or with us just missing being together.  We were committed to not regreting our choice and to not blaming ourselves if the outcome was not everything we had ever dreamed it to be.  So we were determined not to live with regrets no matter what but I can tell you that it was been totally wonderful, worth the efforts and the expenses and the separation and the losing of organs.  Worth it all.  The babies are happier, our family is happier and it was the best decision we could have made. 

I will say that our normal still does not resemble any one else's normal.  In part because as a transplant recipient, the babies do still have some medical concerns.  So they have to be watched more carefully and get labs and have their blood pressure monitored daily.  So while they are 'healthy', to some degree they do still have a medical concern so that is still part of our life.  Take today for instance... I wake up to Max coughing, sounding like he wants to throw up and generally seeming miserable.  I sit with him for a while trying to comfort him and pretending to be a doctor trying to diagnose him.  Once Emily gets up to hold him, I then go to check on Addie who is still asleep.  I realize when I check on her that her bed and PJs have blood on them.  I panic, check her diaper which seems to be full of bloody poop.  Addie has been dealing with either pink eye or an ear infection for weeks and just yesterday went on a new antibiotic so I am wondering if it is a reaction to that or you know some new medical issue just waiting to enter our lives.  I clean her up and take pictures of the diaper and store it in a Ziploc, feeling sufficiently disgusting.  I text her nephrologist and then head off to work leaving Al and Emily with this handful.  I get there and touch base with our dr and my mom comes to get Addie and take her into the hospital.  A few hours of worrying later and it is determined that it is not blood but rather a very rare strange side effect to the antibiotic whereby it turned her poop red. A benign side effect, other than the heart attack it nearly gave me this morning!  So my mom brings Addie back home while Emily and Al try and soothe Max, checking his temperature with neurotic frequencies.  Around 2pm someone from Medicaid is due to arrive to assess Max for help with daily living based on his disabilities so they are preparing for that interview.

And that is today's drama.  More dramatic than most but not completely out of the ordinary either.  It's a busy dance with hearing aids, patches, feeding tubes, wheelchairs and all kinds of things I never imagined in our daily life.  But we are getting the hang of things, some more quickly than others.  Addie's hearing aids are surprisingly easy now... But she still isn't talking.  We are excited to move Max out of the living room since he is no longer on his machine... But realizing that as he is so heavy now and still unable to support his head and therefore most difficult to carry, that upstairs is not really an option so we are trying to figure out where to settle Max in.  I won't say they are small challenges because they are not.  In some ways dealing with their disabilities is more challenging than dealing with kidney stuff.  Less terrifying but more upsetting. But at the end of the day, although these issues can make us worried or sad, they are not life or death issues.  The babies are healthy and for the most part happy!  They have overcome tremendous obstacles and we stand amazed at where they are at.  And we feel lots of hope!  I have meant to write a post one day about what Dr Google has to say about Congenital Nephrotic Syndrome... but to make a long post short, the odds were stacked against Max and Addie still being here with us today.  Much less being so happy and incredibly cute :)  So while our life is not and never will be easy or normal and while we still deal with things that to others may seem incredibly difficult, we are happy to be here and are genuinely enjoying our new normal life, even on the days when it includes red poop and drama galore!