Saturday, June 08, 2013

Wesley's Situation

This is the first picture we ever saw of Wesley.  And c'mon...who wouldn't want to squeeze those cheeks and call him your own forever! :)  We learned of his medical condition and what he had gone through in his short life.  We prayed about pursuing adopting him and felt led to do so.  So we did.  Despite what we knew would lie ahead of us with him.  He deserved a family and a wonderful life and we wanted to give that to him.

You see, Wesley was born with Chronic Renal Failure.  He went through nearly 2 very sick years of life where there was a time he was unable to even be on the transplant list because he was too ill.  He was cared for by an incredible family who took care of his every need and nursed him back to a place where he could be put back on the transplant list.  They were with him during that trying time when, just before the age of 2, he got a new kidney.  He needed round the clock care and they did it happily.  We are so grateful for them.  We are sad to have missed any part of his life, but he was where God intended for him to be at that time.

We met Wesley in January 2012, just over a year post transplant.  You would NEVER have known he had any sort of medical needs!

Wesley is the most energetic, lively little boy I know!  He is strong and determined and FULL of personality!

He came to live with us in March 2012 and we began the process to adopt him! :)
He was still receiving feedings and water through his g-tube at this time.  We gave him 8 meds day and night through his tube and he was eating very little food and drinking just a little water by mouth.  He got lab work at least once a month and saw his doctors and specialists that often as well.  It was a lot overwhelming to remember everything and learn all that was required to care for his needs.  We fell into the role pretty quickly though and it became our new normal.

We had some hiccups along the way with his lab work.  Levels too high or low, issues that we addressed with adjusting some meds or by doing more frequent water boluses.

Through all of that, Wesley always seemed like a perfectly healthy, normal 3 1/2 year old!  Always smiling and full of life.

And let's not forget his pure joy for life.  He is hilarious and grabs life by the horns in all he does!

June 13th, 2012 we were smacked in the face with the harsh reality that is is medical condition.  Wesley was hospitalized with an extremely high fever and vomiting.  He went from good to terrible in a few short hours.  It was the scariest thing I have ever been a part of.  At this point, he had only been part of our family for a little over 3 months, but he was our son.  We loved him and we were scared.  It took a couple of days for the doctors to find out what was wrong.  He had gotten a UTI and it had crept up into his kidney.  He was hospitalized for a week, completely bed ridden and slept about 22 hours a day during that week.  Every time he started to seem a bit better, something happened that set him back.  That was the week that I realized that even though he has a tough, lively exterior, the reality is that he is fragile.  That the little things that make a normal little one feel yucky and tired will land him in the hospital with dangerously high fevers amongst other things.

To see our son in this state was in a weird sort of way, just what we needed to "get it". scary sick.

The day Wesley was put in the hospital, he was taken off one of his anti-rejection medications for an undetermined amount of time.  One of the things that raised concern prior to this hospitalization was that the BK Virus was detected in his labs at a much higher level than the doctors like to see.  The BK Virus levels were increased because his anti-rejection meds weaken his immune system.  The BK Virus being too high is dangerous for him.  The short of it is that if those levels aren't controlled, it would cause him to reject his kidney.  So his doctor took him off of one of his anti-rejection meds that day.

Well, that decision seemed to do the trick.  Since that hospitalization and the elimination of this med, Wesley has had an incredible year!  His labs have (for the most part) been great, he has started taking enough food orally that he no longer gets night time feedings.  He drinks so much water throughout the day that he doesn't need many or any water boluses throughout the day, he has gotten potty trained and has been very healthy with virtually no health scares at all.

He got a slick new haircut, started preschool and has LOVED it!

We walked the Kidney walk to support the National Kidney Foundation and have been super active all year and Wesley hasn't skipped a beat!

He turned 4 and graduated to his big boy bed.  Things couldn't have been more "normal".  You know, OUR normal.

Every morning and night when I am giving Wesley his meds, I am reminded of his condition...of the reality.  This health isn't permanent.  His kidney won't last forever.  It just won't.  We were told in the beginning that kidneys typically last 10-15 years and that due to Wesley being high risk, the doctors would be beyond thrilled if his kidney lasted that long before he needed another transplant.  With his outside health, it just seemed to us that he would beat the odds, that this kidney would last at LEAST that long!  Well, we hoped! ;)

He deserves to be that healthy, silly, loving, energetic little boy that he is now forever!  We hate that he has to go through any of this medical stuff.

He is too full of joy, too full of life for all of this medical stuff he has to even seem real!

It's heartbreaking and also he is such an inspiration.  He has made me see what true strength looks like.
I love this boy so much, I can't even put it into words!
 So, this is where we are at now.
We had his doctor appointment with his Pediatric Nephrologist (the most amazing, wonderful doctor ever...for reals) a month ago or so.  He informed us at that time that we needed to put Wesley back on his anti-rejection med he took him off of almost a year ago.  Being off of that med for too long would cause him to go into rejection and it was pushing that "too long" point.  The hope was that he would handle it just fine now that he has gotten bigger and progressed so much over this last year.  They decided to ease him in and assumed that it would be just fine and hopefully that annoying BK Virus wouldn't show back up for a long time or ever.  They started him on it and only a week later we got his labs taken for just a check to see how things looked.  Unfortunately, the BK Virus was detectable.  It only took a week of him being on a small dose of this to show up.  Not good.  The problem is that he HAS to be on this drug or he will go into rejection, but we cannot let these BK Virus levels increase because that can cause him to go into rejection.  It's a balancing act.  There is a medication that they would give adults in this situation, but Wes is too small.  So it just seems so scary to what is the lesser of 2 evils?  Ugh.  Our hope and prayer is that some sort of "perfect mix" is figured out with his medications and things will balance out. His medical team is working on all of this and we have complete faith in them.

The other facet to this is that he is going to need more frequent lab work and he has never been able to get lab draws from his arms since we have had him because his veins have all calcified in his arms and so his draws are always done from his feet.  In the course of this last year, most of his veins in his feet are shot now as well.  They struggle to get enough blood each month and we have begun talking about a port.  However, adding another piece of plastic in his body is a risk too so his doctors want to avoid a port if at all possible.  Not only is it hard to get the necessary amount of blood, but it is hard on Wesley...he knows he will be poked several times and he is not fond of this monthly appointment which will now likely turn into several times a month.

We love our boys and want nothing but health and happiness for them.
We are scared.  We are worried.

And then Wesley is just going about his normal, energetic days and we are reminded that we need to soak this time up with him because the truth is, you just never know when things will change...and not only for him, but for any of us.  There are no guarantees in life, that's for sure.  We pray that it doesn't change for him anytime soon, that he will be able to get through this and things can be addressed before he feels symptoms or has issues that affect his quality of life.  We pray that this great health he's been having remains for many more years before we have to address the issues that come with his condition and needing his next kidney.  We pray that he beats the odds and this kidney gets him into his teens.  No matter what happens, we will deal with it.  We have to.  He is our son and we will do ANYTHING it takes to keep him healthy and happy.  He has taught us so much and we love him so much it hurts.

Still, we are scared.  I am so scared.  The worry is so heavy, it is so consuming.  I want it go away, I want to hand it over to God and for it to be lifted from me.  I can't get it to go away.  I can't stop letting myself go to "that place"...that place that many mothers go to...that "worst case scenario" place.  It's still fresh and no major decisions have been made, so maybe that's it.  Maybe once we change our course of treatment for this I will feel better.  I don't know...maybe I won't ever feel better.  Sometimes I think that.  You know, it has really put things into perspective for me, that's for sure!  I don't care at all about my unfinished basement or the fact that I don't have trim up in our main bathroom...I don't care that I have outgrowth and my color is faded and my hair needs cut and my brows haven't been waxed in a year (ya, it's true!  Ha.)...I don't care that I have pieces of metal falling off of my van because it's so rusty...I don't care that I got poor customer service and the cashier was super slow making me wait in line for 20 minutes...I don't care if I ever have matching appliances or new counter tops in my kitchen...I don't care that my house isn't spotless and that my laundry isn't all doesn't bother me one bit that stupid, unimportant things don't go my way...I could care less that I had an extra key made for my van just to find out when I put it in the ignition to start the van, it didn't makes no difference to me that my garage is so full of stuff that our  cars don't fit in it right now...all of those things worked my nerves or drove me crazy or upset me or made me angry before...even within the last month.  And now, they all seem so silly and trivial in the scheme of's almost embarrassing to me to admit that any of those things were on my radar as even slightly bothersome.  I just want my boys to be healthy, safe and happy.  I don't want to fear for their health or lives.  That's ALL that matters.  All of those other things don't even exist to me right now...I truly have never cared less about any of those than I do right now.  Life has never before been put into perspective like it is now...and for that, I am grateful.  I am grateful that in this moment, the REAL important things matter.  I hope that I never forget to remember to let those trivial things go, to not let them even waste a moment of my life.  I am human, I am sure that I will let those trivial worries and bothers work their way into my life again, but what I will have going forward is the knowledge of what it feels like to truly have perspective and I pray that in those moments when those trivial things slip back in, I will go to THIS place where I am right now and remember to let those things go because they just simply don't matter...they don't matter.

Please, if you have a moment to say a prayer for our Wesley and for his medical team and for us, we would so greatly appreciate it.  We have had an overwhelming amount of calls and messages and we are humbled by all of your love and support.  Thank you so much...we wish we could say more, but thank you is all we have.


Anonymous said...

Oh Jennie you are such a wonderful mom. Thanks for the info and for your honesty and positivity....I will be glad to pray for Wesley, his doctors and you!

Angie said...

Jennie, what a lovely post. I pray for Wesley & your entire family. I can relate to your words as I've been in those "places" many times. I thank you for putting me back into my place & setting the perspective that matters...let go of the little stuff. I will do exactly that today, tonight & tomorrow. Love your words. Angie

Beckysblog said...

Prayers and love to you and your boys tonight Jennie.

Donna said...

Continued prayers to you and your little blessings. Reading your post is a strong reminder to all of the important things in life. You're a great mom, a natural. Your little guys have wonderful parents, grandparents and extended family; they know love...the greatest gift of all. Nana B

Farm-Raised said...

Oh honey. You are such a beautiful, brave person. I am praying for Wesley and your entire family. This post is so honest and wise. Thank you for sharing your reality and reminding me what's truly important.

Andrea Dellit said...

Still thinking about you. Thank you for sharing your story about Wesley with us and for reminding us what is important in life.

Many hugs.