Thursday, October 22, 2009

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.

52 comments:

Lindsay said...

You've got my prayers.

Brooke Kelly Photography said...

Done. I hope everything will turn out fine. Thinking of you and your precious family!!

Jo said...

My thoughts are with you and your family. Sometimes the hardest part is when you don't know for sure(esp hard on parents)- it sounds like you will get some answers once the biopsy is done and you will be able to make some informed decisions

Kodi said...

Saying a prayer for sweet, adorable, precious Hudson right now.

A Southern Accent said...

Praying for you and Hudson. Don't ever be afraid to ask for that from us!

Robin said...

Many thoughts and prayers headed your's and Hudson's way!

{{HUGS}}

Robin

Love the Decor! said...

Praying for and Hudson
Please always ask It is a privilege to be able to pray for you!

Roxanne said...

Prayers going up for your sweet Hudson!

Mistress said...

Prayers for Hudson!

Breaks my heart when things happen to innocent children...

Stay strong

Libzsonshine said...

Am praying for medical wisdom for Hudson and that you get quick answers that make his life better!

Big hugs...and lottsa prayers for Hudson and your family!

donna_437 said...

Kim, My prayers are with you and your family.

tale of many cities said...

you've got 'em Kim. hang in there!

Mommy said...

It is so hard, as a Mother, to constantly remind ourselves that WE are not in control. I struggle with the same issue as you well know. I have been praying for H and will continue as you wait for the biopsy. And don't EVER be afraid to ask for prayer. As friends, if we do not love, support and lift each other up in the good and the bad, what's the point of having friends? Love you!

Melinda said...

Hi Kim...
I will most certainly remember Hudson in my prayers. Poor little guy! Give him a big hug from my boys and I.
I can also totally relate to your issues surrounding the steroid use. My youngest son was diagnosed with asthma just 2 days before his first birthday and spent the big day (4 days in total) hospitalized and on constant masks and other treatment including steroids. It also make him cranky and hyper..although at his age hyper just meant unable to sleep and very restless. Steroids became a part of him life for the next 1.5-2 years, and the side effects continued, and were joined with tooth decay. Thankfully, Kaleb is now healthy and has not taken the drug for nearly 4 years, but I can understand your frustration, and I sympathize immensely with you, and Hudson.
Hang in there girl! BIG hugs!!

Melinda

Beth said...

Done! You got 'em! They're coming your way! I hope doing the biopsy and changing the meds will be the answer for you.

Melissa's Thoughts said...

You got it...praying in advance of the good news.

Brandie said...

Consider it done. Your whole family is in my prayers.

Bless My Mess! said...

You have got it Kim...my prayers and my thoughts are with you & with Hudson. Be strong Mama....lift it all up to God. Please keep us posted.

Jen R. said...

I will pray and hope things clear up asap.

Jenn said...

Thinking of your little guy and your family.

Susan said...

I will be praying for little Hudson and your family as well. I hope everything goes perfect and the your little man gets better soon. Please keep us posted.

jmberrygirl said...

You've got the prayers. I have dealt with steroids in the past, with some degree of frequency, and have yet to see permenant or even lasting damage. Little bodies are pretty resiliant. Best wishes for the upcoming biopsy. As I said, many, many prayers will go up for Hudson. =)

Holli said...

Praying for Hudson!

B.jane said...

I'm praying too!

Lynda @ SportsMadGirl said...

You got 'em...You and Hudson are in my prayers.

Never be afraid or ashamed to ask us for prayers!!

The Writer Chic said...

You've got it, Kim! Please let me know if I can do anything. I'd be happy to meet you at Vandy one day when you're down there just to sit and talk and pray. You know where to find me. Hugs.

newmanfamily said...

You got my prayers! Putting a notecard right about my computer when I get done posting!
Lori

chesley said...

praying for you guys! i really hope they can figure this out! poor guy!

Rach said...

Hoping and praying that the biopsy gives you answers and gets you OFF the steriods for good!! Love the montage of Hud pics by the way. :)

Julie said...

Hi Kim, you should always feel freedom to ask for prayers... that is soooo important. So important. And I cannot imagine what you are going through... when Eli was in the hospital for his blood clot (which is still there) they put him on two different strong steroids for months. And he completely changed. I asked Zach at one point, "who is this child and will we ever see our son again?" I was worried because I really didn't know what happened to Eli. He was so different and angry all the time. He ate all the time too, I couldn't keep enough food in him. It was strange. He was no longer my loving sweet boy. He was on them for 4 months. It seemed so long to me, but once he got off... he returned. It was such a blessing! So great. I am so thankful. So, I know how to pray and will be praying for Hudson and YOU... as you walk through this with him. Hugs to you!!!

Megan L Hutchings said...

We will be parying for you, for Hudson, and for those who will be caring for him!

All Things Southern said...

Kim I will be praying for Hudson. You are a good mom and you will get through this. He looks like a strong vibrant boy and I know he's surrounded by lots of love. Everything will be fine.

cindy said...

Kim! You've got it!

-c

Queenneenee said...

Sending prayers your way GF. Your son is one handsome little dude! Please let us know how things go, he is blessed to have such a great mom.

Lea Ann said...

Praying for Hudson's health- and for your family during this time!! Love you guys, Lea Ann

Shady Lady! said...

Those pictures are precious. My family will be praying for Hudson.

Heather said...

I will be praying for Hudson!

Twice as Nice said...

Nothing worse than a sick child. We will be praying for Hudson. The Twins

Paige said...

Sending prayers up for you, Hudson and the rest of the family right now!

Brewskie said...

Absolutely! Remember our God is a big God. There is no accident, incident or situation too big for Him. It's no harder for Him to fix this then it it for us to go grab a drink from the fridge. Before the world was ever formed God knew you and Hudson, he knew this situation would come and He already created the solution for it all - before time even began. This hasn't surprised Him. Just rest in the knowledge that God knew before, He knows now, and He has the outcome. Seek Him.

jess said...

Definetely. Hudson's in our prayers. Oh, and we have a new name in our family this week. Sullivan Charles... When you start taking new orders, now I'll know what direction to go. :) PS. Do you have Bradyn and Austin's new painting done yet?

Casa Mia * My House * said...

My thoughts and prayers are with you and your family.

Susie from Bienvenue said...

Sweet friend...you have my prayers~

J Family said...

You definitely have prayers from here!! I love all the pictures you added to this post.

Meagan said...

You, Hudson, and your whole family have my prayers!!!!

Lauren said...

You've always had mine, and will have them even more now.

Hudson will read this post one day and know how loved he is.

joanne said...

Hey Kim,
I know this has to be hard. I believe Hudson is going to be just fine! When I was a kid, I had all sorts of odd and weird things that went on in my body from age 5-11, then I grew up perfectly healthy. My brother has some extensive knowledge on proteins and kidney issues and is a transplant recipient. I know this doesn't have anything to do with Hudson, but he may be able to help you with any question you may have regardgin kidney function. You can reach him through fb or email thompson@seattleu.edu blessings to you always.

Swan Family said...

You've got our prayers here in Houston and we'll keep'em coming!

Laurie said...

Absolutely. You definitely need to get some answers, the sooner the better. You must be so frustrated!!!! Best wishes for the best possible outcome.
Laurie S.

Holly said...

Of course you have our prayers for your sweet Hudson. Positive thoughts and blessings!! Holly

Melissa @ The Inspired Room said...

oh, prayers going out right now...

Sunni at The Flying Mum said...

You've got my prayers. Sorry, I know this is late, but I'm SO BEHIND on reading blogs.
love,
Sunni