Sunday, September 23, 2012

Good kidney news and Heart Mom Lesson #10

Things have been going much better since my last post, that was a lot of bad stuff all at once.  I was beginning to feel like we were cursed!  The past two weeks have gone much smoother.  We did have one bit of really good news.   Abby had 3 lab results in a row that showed that her kidney's weren't functioning at the level they were supposed to be.  Each time we did labs, it got worse.  Finally, last week, her labs came back with her kidney function in the normal range!!  YAHOO! We really needed this good news!  The only thing we are still worried about is that Abby has had a pain in her lower back and side area on the right side.  It's lasted over 2 weeks now.  Before we got the good lab results, we thought it could possibly be kidney-related.  Both an ultrasound and a CT-scan showed that her kidneys looked good.  But, the pain won't go away.  We've almost ruled out everything now, so we're thinking that maybe it's just a strained muscle, but who knows for sure.  It's so tender that she won't even let anyone touch it.  We're trying a couple of other things and hopefully we can figure this out.  It really stinks because the only thing we can give her for pain is Tylenol, and that does nothing.  It's so frustrating to see her hurting so much but not knowing why and not being able to fix it.  I just want her to stop being in pain.  Other than that, Abby is doing well.  She's going to school every day, getting straight A's, and trying to play soccer-for as long as her back will let her anyway.  We don't go back to clinic until November 5th, that's hard to believe.

As for the rest of us, Britt is loving her classes at Dixie State and working hard to maintain a high GPA so she doesn't lose her scholarship and so that she can get into nursing school.  She's also still loving being a CNA!  We are going to schedule her to get her tonsils out over Christmas break, it has to be done as soon as possible, but she can't miss school, so Christmas is the best time-Merry Christmas Britt!

Brock's football team is doing well.  They lost to Dixie last week, but it was a close game, it could've gone either way.  Brock works hard, he starts O and D line in the games so he doesn't get to rest a lot.  It's good for him, but not easy.  He's a little beat up after the games, but not as beat up as the guys he's going against!  I'm always proud of him, he never complains, even when he's playing injured.  The kid loves football and always has....and he's so cute too!

I am loving teaching school again.  I was worried going back because last year was so hard, but I feel like myself up there teaching, just like I used to.  I have great classes full of great kids, and great teachers to work with too.  I couldn't ask for anything better.  I'm also writing a book about everything that happened to us this past year and a half.  It's not easy to write it, it's like reliving everything over again, but it's helping me to remember all of the amazing and miraculous things that happened to my family and how we coped with these things.  I just finished the chapter about the day Abby had her transplant, I bawled the whole time I was writing, what an incredible day full of so many emotions.  Hopefully, when I'm done writing, I can find a publisher that wants to publish our story.....I have to pay for this transplant somehow!  But, to be honest with you, I've never written a book before.  I really don't have any idea what I'm doing and I have no idea what to do after I get done with the writing.  But, like everything we've been through, I just feel like things will fall into place just how they're supposed to, I just need to keep writing.  I'm also down 20 pounds :)

I think I'll end this post with a little thing I came across on another heart blog.  Most of it applies to us, and I thought it was perfect.

Heart mom lesson number ten...
Forget who you were...and who you have been,
Life is take a detour,
And you will be your very core.

You've just found out...something's not right,
How will you make it through this plight?
What can you do? What should you expect?
Of life with a child...with a heart defect?

Heart mom lesson number nine...
You'll learn to say...things are just fine,
When people stop... to just say hi,
There will be long to cry.

Bound by worry, fear, and stress,
At times you'll think..."I am a mess",
You'll smile, thinking...can they tell?
Then say..."thank you we’re doing well".

Heart mom lesson number eight...
You'll learn just what it means to wait.
Patience is a virtue right?
Who really needs to sleep at night?

A hospital room... not a permanent state,
As each day passes... home must wait.
Patience is knowing...things won't stay the same,
Patience is accepting...a changing time frame.

Heart mom lesson seven here..
Our children's futures still aren't clear,
Innovations continue to thrive,
Each year more children will survive.

These children...and their families,
Will rise to fight...these CHD's. imperative,
Our kid's deserve a live.

Heart mom lesson number six....
It's clear life holds no easy fix,
If life were every way,
I guess...I'd have no need to pray,

I'd still be living...blind...and dim,
Forgetting...I must lean on HIM.
I cannot change the way things are,
But prayer makes God...seem not so far.

Heart mom lesson number five,
Cherish this day...your child's alive.
Today we frolicked in the snow,
(Did he like it?

I watched him snowflakes fell,
I thought...thank God...he's doing well,
A bundled boy...warm glove,
No doubt about it...this is love.

Heart mom lesson number four...
There is always time for more,
More messes that need cleaning up,
More cartoons on tv,
More yes...I'm gonna tickle you,
(The best things remain free)

More bubbles in the bathtub,
More more song,
More this little piggie went to market,
One more...just can't be wrong.

Heart mom lesson number three...
Their special us to see...
Did I always understand?
That God holds our lives in his hand?

Before my child...I took for granted,
The gifts in my life...that God surely planted,
Before my eyes...I missed
My heart child came...I see them now.

Lesson number two...take heart...
It is okay, to fall apart... 
It's not easy, we don't know...
Will we watch our children grow?

God looks to his angels...saying see why I chose her,
She's never afraid to lose her composure...
In her heart...she feels defiled,
But nothing will stop her... from loving her child.

Heart mom lesson...number one...
It must be said...we're never done!
That day...will never come you see,
We'll always face uncertainty,

But I will face each day unknown,
Taking heart...I'm not alone,
These lessons... remind me to cope,
Stand strong...believe...and always hope.

~Stephanie Husted

Sunday, September 9, 2012

A trip to the emergency room with Britt......we are now done, we've had enough.

Happy Birthday to Britt!  I can't believe I have a 19-year-old!  Britt is an amazing kid, I coudn't ask for a better daughter.  She makes my job of being a mom easy!

This has not been a good week, in fact, it's been a really, really lousy week.  On top of Abby's clinic news and Brock's car being backed into and dented at school, I also got to take Britt to the emergency room in Riverton last night! 

This past week, Britt had been getting sicker and sicker.  She had a bunch of swelling in her neck and chin area, and the her neck started getting really stiff and sore.  Then she started having a hard time swallowing and she couldn't turn her head at all.  We tried to just ignore it and hope it went away, she had these same symptoms twice in the past 6 months.  We were just watching and hoping for no fever.  But, unforunately, on Saturday, as we were driving back to Salt Lake to attend my nephew's missionary farewell, Britt spiked a fever.  As soon as my dad saw her, he said it was time to take her to the emergency room, and it's a good thing we did.  After taking some blood for labs and a CT Scan on her throat and neck area, they found that Britt had an abscess in her left tonsil.  How do you treat an abscess in the tonsils?  It depends on the size.  If it's 1 cm or bigger, it has to be drained surgically, anything smaller than that is first treated with antibiotics to see if that will bring down the size, before having to surgically remove it. The size of Britt's abscess was 9.7 mm, now that's cutting it close!  They gave Britt some IV antibiotics, as well as pain medicine and some steroids.  Thankfully, we got to go home that night, with strict instructions that if it gets any worse, we needed to go right back in.  It was a relief to finally know what was going on with Britt, I had really started to worry.  The not-so-good news is that because Britt has had this 3 times in the past year, and each time it's gotten worse, she will need to have her tonsils out the next time she has a break from school.  From what I've heard, this isn't the most fun thing to do when you're Britt's age.  Just another surgery we'll be looking forward to at our house.   Today she is doing a little bit better.  The biggest problem is that she has a lot of pills she's supposed to be swallowing, which is hard to do when you have an abscess in your throat that makes it so you can't even swallow your spit very comfortably.  Hopefully, things will get easier for her soon.  This is not a fun way to spend your birthday!

At least we got to attend my nephew's farewell and visit with family and friends for a little while before we got back on the road to get Britt home.  Zach, you gave an awesome talk and you will be a successful missionary!  Hearing him speak was definitely the highlight of our not so great week.

 As I started driving home, I was feeling a little better about things, and then I saw the cop hiding behind the construction equipment on I-15 holding his radar gun pointed right at me.  Every time I've been pulled over, I've been able to talk my way out of it and only get a warning, but this guy didn't even give me a chance.  In my defense, he was sitting directly in front of the "end of construction" sign and within 100 yards of the 75 mph sign.  But, that didn't matter.  20 miles per hour over the speed limit in a construction zone could be a hefty ticket.  He should have looked at my record and seen that I haven't had a ticket in 20 years, and if he would've known how many times I've driven that road in the past year and why, he would've had some sympathy.  But, he didn't even give me the chance to play the "Abby" card.  So, I guess it just goes to show that even when you're doing a good deed, you can still be punished.

 Honestly,  after this past week, I can't help but think, "Are you kidding me?? When is it enough?? Is there some reason I'm not supposed to just be happy?? " I'll admit that I've been feeling a little picked on. I'm not sure why I keep having to deal with so many things, but it sure seems like it might be somebody else's turn for a while.  I feel like I've rebounded really well through everything this past year, but, it's starting to get a little harder to do.  I just want NO excitement, nothing, for a while.  It's been 2 years, almost to the day, since Britt tore her ACL.  It seems like that was the beginning of all of this.  Before that, we were just normal.  I think 2 years is enough, we are done now.  We've had enough.

Thursday, September 6, 2012

Some good news and something to worry about......

I know, I know....I think this is the longest I've gone without writing a blog post, but that's because things have been so good! We've been in school for 4 weeks now, and Abby has only missed one day; well actually today was her second.  She's already been in school more days this year than she went her entire 7th grade year.  She's loving it, but she does get tired, it wears her out.  It was good to hear from the transplant team today that she's not the only transplant kid with this problem.  Hopefully, she'll get more used to it as the year goes on.

So, we had clinic today, we haven't been there for 5 weeks!  We had to have labs drawn last weekend because we made some adjustments to Abby's meds because her swelling in her feet and legs has gotten so much worse since school started, so we wanted to make sure all of her labs were still where they were supposed to be.  So we didn't have to have any blood drawn today, which was a nice change!  We did have to spend time at the Moran Eye Center to follow up on Abby's CMV.  Thankfully, things looked perfect, it didn't spread to her eyes, so we're all clear as far as her eye's go.  The eye doctor actually said that if we WANTED to come back in 6 months, we could!  We both just laughed, like we would really want to go back if we didn't have to!  It was nice to cross that problem off of the list though.

After our time spent at Moran, we went back to finish clinic.  Abby had already had her echo, so we just needed to talk to the transplant team and the doctors.  It was actually fun to see them and catch up a little bit, it had been a long time.  They said that Abby's echo looked good, in fact, perfect.  We talked about her pulmonary hypertension again, it's not going away and they pretty much told me today not to plan on it ever going away.  Since we're a year out of transplant with no change, it's probably not ever going to change.  Dr. Molina was so patient and gave us a whole lesson on what pulmonary hypertension is and why it causes Abby's feet to swell.  We have a few things we can try, and if things get worse, we might have to make some med changes in the near future, but we have a bigger issue to deal with first. 

Last time we were at clinic, I heard them mention that Abby's kidney function was down a little, but nothing to worry about, they just told Abby to start drinking more water. Today, Abby's kidney function was down more than just a little, it wasn't good.  They discussed referring her to a nephrologist (kidney doctor).  We decided that Abby is going to work really hard on increasing her fluid intake,  then she's going to have labs drawn again in two weeks.  That will then help us determine what we'll decide what to do next.  This could also be adding to the swelling in the feet and legs.  I know that her anti-rejection meds are hard on her kidney's, but I didn't think this was anything we'd have to think about and deal with for 20 years!  Nobody knows why Abby's already having some problems, I guess it's just Abby's way.  We're just going to start praying now that in 2 weeks things will look better and we can put this problem to rest for 20 more years.

So....... heart function=good.  Blood counts=good.  Other labs=good. Eyes=good. Pulmonary hypertension=not so good, but it is what it is, we can cope.  Kidneys=not so good, our biggest worry right now.   Next clinic date=good.  Two whole months until they need to see us again, unless things don't look good with her labs in two weeks.  

It was an exhausting day, clinic and all the driving make me tired.  Tomorrow it's back to school and and then I have to spend time dealing with the insurance companies.  A girl decided not to look while she was backing out of the school parking lot a couple of days ago, and crashed right into Brock's car and left a big dent.  Brock did a great job taking care of things until he could get a hold of me.  I don't always look at my phone while I'm teaching school, so I didn't even know he called, so he called the insurance company and the cop and started the process.  What a great kid!  Tomorrow we drive to Cedar City to watch him play football, which is always fun, then Saturday we head back to Salt Lake for my nephew's missionary farewell that's this Sunday.  It's been a crazy week, and we're just getting going!  If you see Abby anytime soon, tell her to get a drink!