Asking for prayers . . .

I have no doubt that everyone that reads this blog knows how much I love my children. When I think back on life before my kids, I vividly remember the “something is missing” feeling. Not that I waited too long before starting my family – it really was perfect timing – all 3 unexpected pregnancies. I’m not going to lie – every pregnancy was unplanned – all big shockers – and every time I was filled with nothing but joy and excitement.

But let me tell you, Hudson gave me something special. And all mothers out there know exactly what I’m talking about with your first born. I was the perfect mother!!! Then, of course, I had a kid! haha! The big plans I had got squashed and something bigger and better came out of it! I always referred to my pregnancies as the longest wait for a blind date ever! And knowing that I wasn’t going to be disappointed!

As most of you know, Hudson has a little issue with his kidneys since last November. I don’t want it to sound like he “suffers” from it – because I don’t think he feels severe pain. And I don’t like to call it a syndrome – because that sounds permanent. The assumption is that it’s a nephrotic syndrome called minimal change disease that we have been told he should outgrow between the ages of 5 and 8. It is purely an assumption due to his symptoms. They cannot say for sure unless they do a biopsy on his kidneys.

The nephrologists have made it clear that this is a somewhat common disease, {although I have NEVER heard of this mess until Hudson got it} and it’s not overly serious. And that he should have only a couple of breakouts of the MCD during his childhood and quickly go into remission. Well, unfortunately for us, we have yet to get a break from the original breakout 11 months ago. The 2 times we thought we were in the clear, his urine tested positive for protein less than a week off of the steroids.

So, we go back on an incredibly high dose of the drugs {supposedly} for a short amount of time till we get a negative protein reading. And then we start the ween off process again. By the way – the ween off is about 5 to 6 months long. AND the short amount of time is not short for us – because usually as soon as we get a negative reading and move the dosage down 1 ml – we have a positive reading again. And the dose goes up AGAIN!

I personally have never taken steroids, but I’ve heard so many people tell me how crazy they made them {or their children} feel. Their doses don’t even add up to what Hudson takes daily. I can only imagine the battles he faces internally.

Today was a big day – back to the children’s hospital to talk about alternatives. Obviously, it’s not working. I’m tired of giving my kid these drugs that do nothing but make him irritable and short tempered. And can leave horrible and lasting side effects. As much as I don’t want my child to have a biopsy, I want to fix this issue. I want to know what kind of permanent damage has been done and I want answers. Is this really MCD or is there another something about to rear its ugly head? I was assured constantly that this treatment is the norm and it worked. Seems we don’t ever really fall in that typical range.

During the appointment today, the doctor suggested the biopsy immediately. She also said he has been on the steroids way too long. {Ya’ think? If she would have thought about it, I told her that the last 2 visits!}

We start the weening tomorrow.

His biopsy is in a couple of weeks.

He will immediately start a new drug that transplant recipients use to help their body accept a new organ. We were told they have positive results with this drug. {Can someone explain to me WHY we weren’t given this one 6 months ago?? Oh, wait – we needed the biopsy.}

For some reason it sounds so much more serious now?

And as much as I know it isn’t in my hands, it is still my job to do all I can for my child.

I don’t think I’ve ever just outright asked for prayers. But again, this isn’t for me either. It’s for my son, Hudson Wyatt Wheeler.

I’m {obviously} a find-a-way, make-a-way person. But I have a clear understanding of who is in control. Still though, I can’t help but feel the anxiety of the unknown wash over me.

So, I’m asking – prayers, please.