Low-Key Easter

We had a Happy Easter at the Burdorfs!  It was the first holiday we've been out of the hospital and all together since Thanksgiving.  Thanksgiving.  Crazy, right?!  To say we were happy to be at home and together is probably the biggest understatement ever.

A few days before Easter we planted some jelly beans along our fence in the front yard.  Do you know what grows when you plant jelly beans?  The kids didn't either, so we had to find out.

Yes, they were trying to dig a hole with a plastic snow shovel - ha!

After seeing what the Easter Bunny brought us, we headed to church and I was able to snap a few pics of my favorite four.  I got these two cute ones after Bowen decided he was going to quit throwing his fit. ;)

 They were saying, "Easter!!!"

 Jenna and I had to get a picture together since we had kind of dressed a like for church. 

 

 And this is what the jelly beans grew!  Suckers.  The kids were trying to figure out how this happened and in the end determined it was the work of the Easter Bunny.

 We are still in "we can't go far from Iowa City at this point in time mode" for anything, so we headed to my dad's in Knoxville for lunch.  It was such a nice day we played outside pretty much the entire time. 

 The Easter Bunny brought the two oldest new gloves, so we had to try them out with some batting practice and a little catch. 

 Concentrating.

Peas in a pod, Bowen and Brody.

 We tried fish-tailing Jenna's hair for the first time ever for church.  It looked pretty cute and better than this picture shows after church and playing outside.

Grandpa Larry has a cement circle in his backyard and the kids loved riding their two tractors and tricycle around and around and around...

 Hanging out in the cool basement with Grandpa. 

 I wanted to try to find my copy of, "Charlotte's Web," I had as a kid for Jenna and I to read together.  When ended up also finding all of my Baby-sitter's Club Books!  Apparently, I had a few of them...;)  They were the BEST books.  Jenna and I took home an entire box of the BSC books - regular books, mysteries, super specials.  I'd say we have enough to keep her busy reading for awhile.

 When we got home, we couldn't just sit inside you know.  We had to play outside some more!  The twins got these little dirt bikes for their birthdays, so they kept riding up and down the driveway. 

 These two. :)

 

Overall, it was a great weekend together.  I love that word!  Lots of time together.  Playing outside together.  Quality time together.  Woo-hoo for being all TOGETHER!!!

Outside at last!

Last weekend was so nice!  We were all home and we all decided to spend some quality time outside.  Brody's birthday was the 28th and he got this T-bolt rocket blaster thing.  It is supposed to shoot 150 feet into the air. 

 The kids were dying to try it, so we headed up to the practice football field to give it a go.  We had some technical difficulties at first and couldn't get it to launch. 

Finally, we got it!!  Brody was one excited kid!

 Jenna and Brody kept trying to catch it when it was close to landing.  They didn't seem to care that right on the box it said not to! ;)

 Everybody wanted a turn trying to launch the rocket.  Blakers waited patiently.

 Bowen was funny.  On the outskirts of the grassy airy was a culvert and he was convinced that their were alligators in there.  I mean, if big sister tells him that it must be true, right?!

 Bowen and Brody are my rough and tumble boys.  Always wanting to tackle and wrestle with you. Mama under attack!

 Blake and his bow legs.  They are just so him.  There's a nursing assistant who met us the day before transplant and she fell in love with his legs. They are now buddies.  He's legs and she's sassy!

 Such a beautiful day!  All four kids were able to burn off some pent up energy from the LONG winter.  The winter that doesn't seem to want to end.  My sympathies to you NW Iowans and Minnesotans reading this.  Yuck!

 Anyway, Brody is convinced he is the fastest person in the family.  Him and Jenna split races.  I will say, he is getting faster!

 The kids thought it would be fun for me and Aaron to race.  Real cool kiddos.  Guess what?  I lost.  I'm still slow and that was ridiculously unfair. ;) 

News from the day:  Blake had labs in Ames and we didn't have to go to Iowa City!  His WBC is still a little high out of normal range, but it did go down since the last time they checked.  I had a tiring day with my two monkeys at home today, so I'd say Blake is feeling just fine!!

HOME and the Red Shoe Run

We made it HOME Tuesday night!  Woo-Hoo!  I had tried to finagle our way out of there Tuesday morning, but the doctor said we had to wait to see specifically what Blake's culture grew so we got on the correct antibiotic for home.  She said there was a small chance we would know by that afternoon. 

Guess what?  We found out about 2:30 PM on Tuesday.  I saw the doctor and asked again about going home.  She said she had to talk to urology, but would see what they could do.  About three hours later the doctor came back.  She told me we could just stay until morning if that was easier.  Hello!  NO!  I told her I wanted to sleep in my own bed. Shockingly, we were out the door by 6:30 PM.   Ahhh...home.  It's good.  My bed was good.  This morning was a little rough with four kids, getting ready for school and Blake pooping all over the floor, but anyway....I will most definitely take it! :)

I also have been meaning to mention that we are doing the Red Shoe  5K Run in Iowa City on Sunday, May 4th.  This will be our third year doing it to help benefit the Ronald McDonald House.  If you are the running or walking type and are close to Iowa City or want to take a road trip come join team #keepfightingblake!!  We would love to have you.  Here is the link to register:
https://endurancecui.active.com/event-reg/select-race?e=5124953  When you register it will ask you if you want to join a team and Blake would be happy to have you on his team! ;)

Alright, labs tomorrow in Ames.  Happy thoughts! 

I just need to vent...

I try to make this blog of ours as happy as I can make it.  But, today, I just need to vent.  If you want to read something that is all rainbows and unicorns please stop reading now. 

Since I last updated the blog, we have been admitted three times and have gone home twice.  Yep, that means that we are back in Iowa City again. 

We got here about 10 PM last nite after we noticed a protrusion of some kind by Blake's belly button.  Worried that it might be a hernia, they asked us to come in.  We thought we were going to have a CT scan done, but the fellow from transplant said he didn't think it was a hernia, but rather an infection under the skin and wouldn't be surprised if Blake's WBC was high.  Guess what?  It was high.  And, just for fun, Blake also spiked a fever. 

I know the drill.  Labs, blood and urine cultures, antibiotics, Tylenol, recheck labs in the morning to check his white blood cell count.  This ain't my first rodeo.  This morning, Blake's WBC came down a little after one dose of two different antibiotics.  His kidney numbers, for those of you wondering, have (thankfully) been rock solid.  We are just waiting to see what the cultures do.  Blake is also super happy and active and just wants to GO, which is also a good thing.

I had a meltdown last nite when I found out we had to come back down.  I cried.  I kicked my bag I take to the hospital (mature, I know), I slammed a couple doors.  This SUCKS.  It SUCKS really, really bad.  I feel like we are in this vicious cycle of infections where he has a high WBC, is admitted, spikes a fever, gets antibiotics, goes home, repeat.  When are we going to break this cycle?!  Every time, EVERY TIME, my heart is full of hope that we are going to get over the hump.  With every admission, I keep thinking that this is just how it's going to be.

I know that this isn't just about me.  This is about Blake.  This is about Aaron.  And Jenna.  And Brody.  And Bowen.  I'm a single mom with Blake in Iowa City, while Aaron is a single dad with three kids back home.  I miss my hubby and kids like crazy.  Anybody that knows me, knows how important family is to me.  This is killing me. 

When we got home last week Bowen didn't want anything to do with me.  After a couple of days, we got some quality time together.  I broke through the barrier.  When we heard last week we had to leave again I said before I left, "Bowen, do you love me?"  Do you know what he said?  He said, "I love daddy first."  That hurt.  A lot.  Like a knife straight through my heart. Yes, I know he's only two years old, but what does he know?  He knows that mommy is always gone or is  leaving him. 

Brody wants constant attention and time with me and just him.  Jenna is the same way.  Who can blame them?!  We've all been through the ringer the past almost-five months.  That's almost half of an entire year (yes, I'm captain obvious).  That's a long time.

I never thought after transplant it would be like this.  I never thought it would be THIS HARD.  Easy?  No.  Like this?!  No way.  I see other transplanted patients that are doing so well and I'm envious.  I wouldn't wish our circumstances on anybody to be honest.  I'm happy for them that they don't have to go through what Blake has.

My head and my heart are not in the best of places right now.  I would never trade Blake for anything.  I love that kid and he just is something else. :)  However, it doesn't make all of this any easier.  It's still hard.  It's still trying.

If you remember I picked a word for 2014.  It was embrace.  Well, I'm trying.  Really hard.  I'm also adding a word to make it a phrase.  EMBRACE THE IN-BETWEENS!  In between hospital stays.  In between trips to Iowa City.  The good stuff.  The swings.  The walks.  The twin conversations.  The four kids playing together.  The family meals.  The tucking everybody in their own beds at night.  That's the stuff I'm trying to really embrace.

What I know is that this is a work in progress.  I am a work in progress.  Every day though, I'm just trying to be a little better than I was the day before.  I'm trying to learn from my mistakes.  But mainly, I'm trying to give myself a break and being accepting of the fact that there will continue to be challenging days in this journey of life.

Four Things...

1. BLAKE'S SURGERY - We started our stay a little early as we were admitted last Friday because Blake's heart rate and blood pressure were high.  Then he started running a fever.  By the time we got to Iowa City he was lethargic and I was having flashbacks to the scariest day ever.

They wasted no time getting us up to the PICU.  After a bunch of fluid and some antibiotics, he was like a new kid.  On Saturday, he was hanging from the monitor in the PICU.  They were like, "Umm...I don't think he needs to be in the PICU." Hahaha.  

Tuesday was the surgery to fix Blake's obstructed ureter.  They got us up to the pre-op area TWO HOURS early.  Why do they do that?!  Here's our pre-surgery selfie. 

  

The surgery went pretty well.  They fixed his ureter and even made his incision (which has been opened now four times!!) look pretty by removing a bunch of scar tissue.  We had to go BACK to the PICU because his blood pressures were low during the surgery.  Like really low and his kidney doesn't like that and so he didn't pee a lot.  

The next morning, we were out of the PICU and back to the regular floor.  Sidenote:  it is astounding how many times we have to switch floors and it's astounding how many rooms both in the PICU and regular floor we have been in.

Right now, Blake is doing pretty well.  He did spike a fever yesterday, but so far his cultures are negative, so we wait and see.  

2. DR. SEUSS WEEK- This is the kids' favorite week of the year at school with dress-up days each day of the week and celebrating Dr. Seuss!  This was Wacky Wednesday.  It took us like an hour on Tuesday night to get their outfits together. :)

 On Thursday, Jenna's teacher emailed me and asked if I would want to read a Dr. Seuss book to the class.  Um...YES!  So, the twins and I read a book to them and had a great time.

 Once Brody found out that I was reading to Jenna's class, he wanted me to read to HIS class.  He talked to his teacher Friday morning and we set the time for 1:45 PM.  Unfortunately, Iowa City wanted us to come because of Blake's heart rate and bps.  Luckily, Aaron was able to sneak over and take my place. 

The librarian was nice enough to take this picture of the twins and me at the Dr. Seuss celebration.

3. CHARACTER COUNTS -  For the second month in a row, we have a Character Counts winner at our house!  I was starting to worry Jenna had turned into a mean girl because she hadn't received an award, but then her teacher told me she was waiting for me to be home before she got one.  Awww....!! I also love how her smile never wavers as she is getting a congrats hug from Bowen!

 4. WORLD KIDNEY DAY - World Kidney Day is today!  I know I talk about kidneys a lot.  That's because they have turned our life upside down.  And, before all this, I had no idea how much they did for our bodies.  Truly amazing organs. 

 

Just a few things your kidneys do:

1. Produce urine

2. Get rid of toxins and excess fluid from your body

3. Help maintain your blood pressure

4. Produce red blood cells

5. Help your body control the salt and potassium levels in your body.

I honestly didn't know they did so much.  I thought they did the first two things on my list.  End of story.  

We have been truly blessed by the selflessness of a stranger, who is now family.  Steph went above and beyond for a complete stranger.  I can't tell you how much this new found bond means to both of our families!

 

 Alright, in honor of World Kidney Day let's all go drink...some water! ;)  

Inspiration and an update

Today was a long day.  A crabby day for me.  Maybe I was just extra stressed out.  I don't know, but I was cranky.  

Blake's procedure ran almost two hours behind schedule, in typical hospital fashion.  We waited and waited and waited....  Anyway, the good news is that they were able to get their needle all the way from Blake's kidney through his obstructed ureter and into his bladder. 

What does this mean?  It means that urine can actually get to his bladder and the tube/stent is now internalized and he doesn't have a huge pee bag hanging out of his kidney.  That's nice!  So far, so good in pee flowing back out his regular catheter.  

Thank you all for the prayers for my mom's husband, Bill, today.  He did end up having quadruple bypass surgery.  When I talked to my mom tonite, she said the surgery went as well as it could.  Bill was in a lot of pain, but overall doing well.  They were going to try to have the breathing tube out tonite and have him up walking tomorrow. 

So, since I had a rough day, I went and read some of my favorite quotes to make me think/smile/laugh.  It always seems to do the trick.  When I posted some of these earlier, you all seemed to enjoy them too, so I thought I would share. :)

 

I will leave you with this HAPPY Blake news - his labs have been amazingly amazing the past two days!!  His creatinine was 0.4 today!  Normal is 0.3-0.4.  His BUN was 19!! Normal is 10-20.  We haven't seen the likes of these numbers for months. 

A member of the nephrology team said to me today, "That's a hell of kidney he's got there.  And that's a hell of a kid you've got there."  Couldn't have said it better myself... :)