The Green 5K

Way back in August, we went to North Liberty to participate in the Green 5K, a 5K that promotes organ donation.  It was two years ago at that run that we met Steph and family for the first time ever.  It was two years ago that we were anxiously awaiting her testing to see if she would get to be Blake's donor.

For obvious reasons, this run is near and dear to our heart.  It literally was a life-changing day for us.  Not only that, but the guy that is in charge of the run received a kidney from his mom.  Before the race, he always talks about his mom and about the life he's gained because of organ donation. I cry.  Every time.  Every single time.

I look at Blake and I think, they didn't think he'd make it past birth and look at him.  His life that's he's gained because of Steph's gift.  Getting to do normal kid stuff.  I can't put into words what that feels like.  Blakers is my little inspiration.  I love this pic that Steph happened to get before the run.

They have a Garden of Life.  Pictured are living donors, deceased donors and recipients.  They each say a little something about the person on the sign.  Again, it is way emotional for me.  

 

 The race itself wasn't too pretty.  Aaron and I were S-L-O-W, but we did it and that's the main thing.  Our friend, Jay, ran it too, but he's super speedy and I think he finished third or something really good like that.

 One of the things I like about this race is they do kids races based on their age.  Bowen LOVES to run and he was super stoked to do it.  Blake has this thing where he hates to be the center of attention, so he didn't run.  Bowen won his age group!  So did Brody!  And Brody did it with one foot.  Seriously, isn't that the strangest picture ever?!

Jay and his buddies

 All the kids were given medals and ribbons after their races.  Yes, even Blakers got one.  Probably because he's so cute!

 

I snapped this photo of Steph and Blake when we got back to the house.  I love how much Blake loves Steph.  I love how he knows he has Steph's kidney.  I love that we are all bonded for life. :)

Snow days and hospital stays

We got to be home for ten days. 10 DAYS.  That is our longest stint since post-transplant when we were home for 11.  People keep asking, "Did you do something extra special or fun?"  Honestly?  Not really.  We got to be a family for the first time in what felt like forever.  We got into a real routine.  I felt like I got to know Jenna, Brody and Bowen again.  Sounds strange, but it's true. 

 

Everything was going so well last Wednesday at our clinic appointment!  Dr. Jetton was happy.  I was happy.  Blake was happy.  Then, Thursday happened. 

On Thursday, I noticed that his urine output was a little less than normal, but not terrible. Overnight on Thursday into Friday it was even less. I texted the doctor at 6:30 AM Friday morning to let her know what was going on. We were having labs drawn on Friday. Blake's kidney function number went up slightly. At 5:30 PM, I talked to the doctor and she said if Blake didn't pee by 8 PM we would have to head to Iowa City. Of course he peed. A little. Dr. Jetton wasn't really telling us we had to come for sure.  In the end, I just thought it was the right thing to do.  So, down we headed at 9 PM and arrived in Iowa City at 11 PM.

 

Long story short, Blake started to pee again in Iowa City during the day Saturday. Then he stopped peeing overnight. Two ultrasounds and a contrast test later on Sunday, it was determined that his one ureter to his one kidney was blocked. It took less than an hour for them to take him into surgery to have a nephrostomy tube (tube directly into his kidney that drains his urine into a bag on the outside of his body) in.  And for those of you with a good memory, yes, he has had one of these before.  

You all should have seen the pee. It was crazy! He just kept peeing and peeing and peeing some more. I'm quite certain that kidney must have let out a huge sigh of relief that the urine could actually go somewhere!  Blake's kidney numbers dropped so nicely.  On Sunday morning, they said his creatinine (kidney function) number was up to 1.9. Hearing that I thought I was going to be sick to my stomach.  It went from 1.0 to 1.9 in a day.  As I type this, his creatinine is 0.6 (0.3-0.4 normal for a kiddo)!

 The big question for the doctors on Blake's teams are - do we fix the ureter now or wait?  There are pros and cons to both.  Infection, is obviously the scary part for Blake having a foreign object in his body.  Getting him stronger, letting the kidney and everything else become decompressed and inflamed is a positive. 

 What we learned today is that Blake will got back to IR (Interventional Radiology), the folks that did the nephrostomy tube on Sunday.  They are going to try to get that needle from Blake's kidney, through his ureter and into his bladder so they can place a stent.  On Sunday, they were unable to get through his ureter, so hopefully everything is less inflamed and they can get it done.  The positive to doing this is that everything will be internal instead of external and Blake won't have any bag hanging off of him again. 

 Dr. Kieran (our urologist) said they have three months to fix his ureter.  Obviously, they don't want to wait that long because of the infection risk.  When they go back in, they will have to open up his abdomen, yet again (sob!).  Poor, poor kiddo.  I thought the third time was the charm, but I guess not.

 

The good news in all of this?  Blake is happy, happy, happy!  All the nurses keep saying they have never seen him in such good spirits.  Also?  We were here and we got this problem taken care of and quickly.  As far as we know, we avoided damage to his kidney. One more thing?  This is fixable. That's awesome.  

 

And, we got to do this at home.  Outside.  All six of us.  It was great.  We are looking forward to more time together very soon.  Thank you ALL for your continued support!!!

Pics - some graphic, some not!

I haven't really posted too many photos from Iowa City, so I decided to post a few.  Warning:  Some of these are not for the weak of stomach!!!  Look away now if you need to. Also, sorry about the crappy quality, a lot of these were taken with my phone.

Dr. Kieran, our urologist, was nice enough to take these photos of Blake's kidneys for me.  How crappy do they look?!  Hello...no wonder they didn't work correctly!

  

As far as I know, nobody got a picture of Steph's beautiful kidney.  I'm very sad about that.

 

This is a picture of Blake's abdomen right after surgery number two.  I tried to label every thing the best I could.

1. Incision:  They used the same one for both surgeries.  After transplant it looked so much better than it does now.  It was all sutured up pretty.  They took the gauze off after surgery #2 and I internally gasped.  Poor kiddo.  

2.PICC Line - like an IV, but it goes a little bit deeper and they can draw labs without poking!

3. G-tube - he's had that since he was born.  We use it to give him meds and for feeds.  It will stay until Blake can prove he can take enough fluids and foods by mouth.

4. JP Drains on the left and right - these are just hanging out in his abdomen collecting any excess fluid that was in there and shouldn't have been.   In after surgery #2.

5. That bag thing that I forgot to label (sorry!) is a pen rose drain.  That was put in after surgery #1.

6. Appendicovesicostomy - this is and will be Blake's catheter he uses for life.  They took his appendix, moved it behind his belly button and used it to make a channel for a tube.  Eventually, it will just be a hole in his belly button region.  We have to keep tubes in there for awhile.

7. Foley catheter - normal catheter.

8. Nephrostomy - because of damage to the kidney, this was put in in surgery #2.  It is a drain that goes directly into the kidney.  It will stay for awhile until the kidney is healed. 

As of now, the right JP drain is gone, the pen rose is gone, the foley catheter is gone.  We will go home with the JP drain, nephrostomy and appendicovesicostomy.  I could go on for days and days and days about drains.  I know more than I ever thought possible.

 

 First day in a chair was pretty awesome.  He was happy, happy, happy!

 I mean, look at that smile!

Steph's first visit to see Blake on her discharge day!  She was in better spirits than Blake that day.

 The Hunecke siblings (and spouses) came for a visit. Blake's very excited, can't you tell?!

Pic by Bowen.

 Chaos in a hospital room.  That's us.

 

 Love having them all together, even if it is in a hospital room. :)

 

Creatinine and a special visitor

We are two days since transplant and things overall are going well!  Yay Blakers!  This picture was taken the morning after transplant.  That is a breathing tube down his throat.  Wednesday morning, he was not a happy camper and the nurse told the doctor that he either needed to be sedated or taken off the breathing tube because it was a not a good situation.  They decided to pull it out and he was much happier. 

Wednesday he was pretty sleepy and comfortable.  They were giving him enough drugs to keep him pretty out of it.  On Wednesday night, we face-timed with Jenna, Brody and Bowen.  Jenna and Brody have had a really busy week and were so excited to tell us all about it.  Bowen, not so much.  He saw Blake and instantly started crying.  Which made me start crying.  That twin connection is no joke people. 

 So, on Thursday Jay and Renae brought down a special visitor - Bowen!!  Blake perked right up when he saw Bowen.  Bowen was very concerned about Blake, but happy to see him.  They read books and Bowen even gave Blake two kisses on the forehead - super cute. 

 Aaron read Blakers a tractor book and this smile was one of the first ones that we have gotten since surgery.  That's what we like to see. :)  Doesn't he look way less puffy than that first picture?  Good sign.

Medically speaking, Blake is doing well overall.  His kidney, which Steph named Praise, is producing pee.  Woo-hoo!  We are having issues with his blood pressure being high.  I know, it's pesky.  Today (Thursday) was a little rough in the afternoon because Blake just wouldn't sleep.  They started to wean him off his pain meds and the night before we didn't get a lot of sleep and he was overly exhausted.  Fingers crossed he sleeps well tonite. 

So, this creatinine number is very important.  Basically, it measures your kidney function.  Like the game of golf, you want a low number.  On Tuesday night, that number was at 5.4.  By Wednesday morning, it was down to 2.8, which the doctors were thrilled with.  Thursday morning, it was all the way down to 0.6.  That is a VERY good sign about the kind of things Blake's new-to-him kidney is doing! 

In addition to #keepfightingblake, we are now adding #keeppeeingblake!!

One Week!

One week from today is the big day!  I can't believe we are down to single digit days.  It once seemed so far away and now, here it is quickly approaching.

We had a pre-op appointment in Iowa City last Friday.  We met with the urologist who will be doing Blake's bladder augmentation.  Dr. Kieran will be taking a portion of his ureters to make his bladder bigger, aka hold more urine.  Right now he holds an ounce and post-surgery we hope that he will be able to hold about four ounces.  We also talked about the catheter placement.

After that, we met with our nurse, Jen, who took Blake's blood pressure.  We've been having some issues lately with it being high.  The last 7-10 days it has been steadily creeping higher.  High blood pressure is caused by too much fluid on Blake, so we made adjustments to his dialysis prescription and added a few extra cycles.  Between that and all the prayers (thank you friends!!), it's working.  Just tonight his bp was 108/60! 

I also wanted to let you know that our good friend, Cathy Conkin, is putting together a "prayer burst" for our family and Steph's family next Tuesday (the 5th) at 7:00 AM.  If you would, we would love it if you would say a prayer for all involved at that time. :)

Transplant Date

Long time, no blog.  I've just been waiting patiently until I had something set in stone to tell you.  Finally...I do!

Remember in this blog I told you how we were going to have his bladder surgery first and then hemo dialysis (6-8 weeks in Iowa City ) and then transplant?  Well, guess what?  NEW PLAN!!

The urologist and our transplant surgeon talked at length and decided that we would do the surgeries together.  That means at the same time.  Like on the same day.  I know, it seems like a lot of surgery.  Yes, I'm nervous.  But, yes, I trust them.  There were several reason for doing it this way that made a lot of sense and once everything was explained to me, I now feel better about things.

After a lot of coordinating schedules and OR's and all that good stuff, we finally got a call that surgery has been set.  Tuesday, November 5th!!  We will go and be admitted first thing on Monday, November 4th. 

So, now we have a date and something to plan for which  is nice.  And, also, if I'm being honest, scary.  A date makes everything real.  I know it was real before, but you know what I mean.

For now, I just plan like a crazy mom and think of a million things I need to get ready between now and then and hope and pray we all can stay healthy! 

 

Verdict is in...

Well, the verdict is in and... DONOR APPROVED!!!!  Steph got the call this afternoon that she had been approved by the transplant board this morning! 

I can't even string together thoughts.  So many happy tears. Feeling blessed.  God is so good.  The power of prayer is an amazing thing. 

Ok, when I can get my thoughts together I'll write more.  Just know that we are one very happy, happy, happy family right now!!!

I'm antsy...

Oh hey...  How's it going this Labor Day for you all?  Oh, me?  Yeah, I'm a little (ok, a lot) antsy. 

I was doing so well.  Honest to goodness.  Not freaking out at all.  Calm even.  I know, it's so unlike me, right?!  I am a freaker-outer.  As today has gone on, I've gotten worse.

The week itself went really fast.  I worked.  Did photography stuff. Cleaned out the toy room. Was distracted by my children.  Went to see my dad.  Went on a boat ride. I ran. Ok, so you get the idea.

Like Aaron said, "We can't control any part of this, so why worry and stress out about it?"  That got me through the week.  Now?  I just WANT TO KNOW. 

The transplant board meets at 8 AM tomorrow (Tuesday morning).  I checked with Steph and she said that we might hear something tomorrow, but there are no guarantees.  AHHH!!  Knowing our track record with the transplant coordinator, I would say we probably won't hear tomorrow. 

If I do hear anything, you know I will let you all know.  In the meantime, let's just keep praying. 

"Have I not commanded you? Be STRONG and COURAGEOUS.  Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9

And now we wait...

Well, today was the day!  Steph and her husband, Isaac, headed to Iowa City for a full day of testing.  They started at 8 AM and I think they made it home in the afternoon.

Isaac was kind enough to bring his iPad from work, so Steph shot me a couple of messages about midday.  She said once they did the first blood draw she relaxed and all the tests went pretty well.

Steph did say there were a couple of minor things that came up, but they didn't think that it was anything major that would eliminate her from being Blake's donor.  Steph said she felt confident that it was going to be ok and her husband said he had a good feeling as well.

So, I forgot to tell you all one very important piece of information on my blog yesterday.  Every single transplant that happens at UIHC has to be approved by the transplant board.  Each case with each potential donor, for better or worse, is presented and they say yes or no.  The transplant board meets on Monday mornings at 8 AM.  Next Monday is Labor Day, so they aren't meeting until Tuesday.

I'm thinking positively!  As least they ARE meeting next week and not skipping a week because of the holiday.  So, now we wait...  Prayers.  Happy thoughts.  Fingers crossed.  :)