Thursday, November 21, 2013

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?! 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. :)

Wednesday, November 20, 2013

The latest...

We did have a big "happening" on Monday.  We got moved from the PICU to a regular room!!  This is awesome.  This is a step in the right direction.  This is a little bit closer to HOME.  As I write this, we are on day 15 in Iowa City and there is no place I would rather be in the whole world right now than HOME. 

I miss normalcy.  I miss all the laundry I have to do.  I miss making lunch for the kids in the morning. I miss my bed.  I miss cooking my own food.  I miss my hubby and my kiddos.  I just miss it.

We heard from the nephrologist, Dr. Brophy, yesterday about his plan.  He would like to have us to the Ronald McDonald House by the weekend.  Stay there for a few days (ish) so we're close for labs and monitoring and then go home.  However, as I got to thinking about it, I'm a little worried about his feeds.  He has a new kidney that needs a lot of fluids and we just aren't quite there yet with his feeds since he still gets about half of his nutrition via his IV.

Our dietician came in this morning and I asked her what she thought and she said she isn't on board with the plan.  Susan would rather us stay through the weekend and then just be able to go home.  So...yep.  A lot still up in the air, but I'm glad people are thinking about us going home. ;)

Good news:
-Blood pressure has stayed stable in the range they want it
-Creatinine has been 0.3 or 0.4, which is perfect.
-He is super thirsty and requesting a "drink".  This has never happened before and it's so exciting!
-Two drains have been removed and his foley catheter. 

I'm debating on posting some graphic photos of what Blake has going on.  I find it fascinating, but it might not be for the weak of stomach. ;)   I will be sure to warn you if they are graphic in advance!

Thursday, November 14, 2013

The last 48 hours

The last 48 hours have been tough.  I'm not going to lie. Still on the roller coaster.

On Tuesday morning, at about 2:00 AM, Blake got really uncomfortable really fast.  We thought maybe his tummy wasn't tolerating his increase of feeds, so they slowed it down.  A couple of hours later, we had to shut them completely off.  Then, the theory was that he hadn't pooped for 24 hours and that was causing discomfort.

On Tuesday we had an x-ray and an ultra sound.  They saw a couple of troubling things, but nothing conclusive.  They did a CT scan with contrast late in the afternoon and discovered that the stent that was at the bottom of the kidney had moved up to the middle of his kidney.

They were able to get it back in place without going to the OR.  Problem solved, right?!  Or so we thought...

On Wednesday, we noticed that Blake's belly looked every more distended than it had the previous day.  By the time rounds were over, he almost had the pregnant lady shelf of a belly.  What was the scariest is that Wednesday morning, there was no urine in either of his catheters.  Urine is a sure sign that the kidney is working and to not see it, panic sets in.

Another ultrasound was ordered.  Again, they weren't happy with what they saw.  In the hall around 10:15 were two transplant surgeons, the nephrology team, the PICU team and the urology team and they were whispering.  You know that's never a good sign.

Next thing I know somebody came in to get my consent for Blake to go back into surgery.  They just needed to see what was going on in there.  I broke down.  I knew it was coming, but I cried anyway.  Poor resident, he didn't know what to do, so I told him just to go on with his explanation.

I wasn't scared or anything.  I'm confident in our team that they will do what they need to do to fix our Blakers.  It's just that I felt SO BAD for Blake.  I wished at that moment that I could have just traded him places and gone through everything for him.

They were in the OR for a long time.  About six hours.  They covered all their bases with ultrasounds.  What they discovered was the stent had indeed done damage to the kidney and it was leaking out the back of it.  No worries, the kidney will heal.  They did have to put in a couple of extra drains, including a nephrostomy, which is a tube that goes right from his kidney outside of his body and the urine drains in a bag.  The good news - none of these are permanent.

Another thing they noticed on the ultrasound was that the main artery to the kidney was being stretched and working way harder than it needed to.  So, they repositioned it and did another ultrasound and were much happier with how things looked.  I can't help but wonder if this urine thing was maybe a blessing in disguise...

I was so glad Aaron and the kids came down.  They were such good distraction for me!  Plus, they were very concerned about Blake, especially Bowen. :)

Today, Blake slept a hole bunch.  I imagine he is sore as all get out.  I finally got some smiles out of him tonite, which made my whole entire day.

Hopefully, we are on the up and up now and can get moved out of the PICU.

Tuesday, November 12, 2013

Roller coaster of a day

Here's something you need to know about me - I hate roller coasters.  Like seriously am scared to death of them.  Today, this day that is supposed to be lucky (11-12-13), has not been so much for us in Iowa City.

Things started overnight with a very uncomfortable Blake about 2:00 AM.  His belly was very distended, so we slowed down on his overnight feeds.  By morning, they had completely turned them off.  It was a night of Blake crying, trying to get comfortable and me feeling overly exhausted and not very helpful.

We also noticed that Blaker's hadn't produced any urine over about a four hour time period.  Yes, panic clearly set in.  Urology came up to flush the catheters (he has two) and they both worked.  An ultrasound was ordered to check the kidney and bladder.

Do you have any idea how nerve wracking it is sitting there while the ultrasound is being done and not having a clue how to read it?  I probably annoyed the nice lady, but I kept asking how things looked.  About the time she finished up, the transplant surgeon on call came around.

Here's some good news:
-The kidney is working GREAT! Praise the Lord!
-The bladder also looked good!
-The catheters are both functioning the way they should.
-Blake's blood pressure has been pretty consistently in a good range.
-The cultures came back this morning unfounded, so there's no infection in his blood stream. 

The problem is, they don't know WHY Blake's abdomen is so distended.  So...he is having a CT scan done with contrast to see what they find.  There may possibly be a leak in the bladder.  The drain they have in for excess blood/fluids from surgery may not be working.  Or, maybe something else.

His white blood cell count did go up slightly, so they aren't sure if he has an infection in his abdominal region that they just can't see.

There's so many cooks in the kitchen.  The nephrology team.  The PICU team.  The transplant team.  The urology team.  They all come see you every single day and it's just always a lot of information to process.

No word has been given on the exact time of the CT scan.  Because he has to be sedated, they will also be putting a central line in prior to the scan.  This will be nice because we can just draw labs out of it and not have to poke him daily.

I will let you know how things turn out as soon as I can.  Please pray for results and solutions to what is found.  Hopefully, Blake can get off this roller coaster soon...

Saturday, November 9, 2013

Before we left...

In the weeks and days leading up to Blake's transplant, people would ask me, "Does he have any idea of what's going to happen?"  I would always respond that no, I didn't think he did.  Thankfully.
 If our nephrology team reads this, they're probably going to have a heart attack, but on the Sunday that we left I took all the kids outside to let them play in the leaves.  Yes, even Blake.  I wanted to do something fun and let him be outside because it's a sense of normalcy.  For him.  For all of us. 
 They had so much fun!  Our neighbor, Jon, picked up the leaves with his mower and made a pile for them.  Now THAT is the way to rake leaves. 
 Friday was a pretty good day in Iowa City.  Blake still refuses to really sleep during the day.  I think he's constantly worried we're going to leave him, which is understandable.
 His blood pressure was still high yesterday, so they put him on an IV drip of nicardipine (for you medical types out there :)) and that seemed to finally make a dent in those insanley high (140/150 systolic) numbers.  Blake was pretty steady in the 108-120 range yesterday. 
By the end of the night, we were reading books, he did a puzzle and even colored a bit.  But, most importantly, he started smiling just a little bit easier.  I miss his ornery face!
 After many crappy nights of sleep, we both finally slept well last nite.  Much needed!
I think the best thing that happened yesterday was that our donor, Steph, was discharged!  She and her husband, Isaac, came up to visit.  Isaac has been up a couple of times, but that was Steph's first time seeing Blake post transplant.  She cried and that made me cry.  It was cool. 
 I can't say enough what Steph has done for this cute little face.  Not only Blake, but our entire family.  Her husband is pretty awesome too to let her do this and he has been nothing but 100% supportive.
Aaron headed home yesterday afternoon.  Jenna has a basketball game bright and early this morning and then he is bringing all three kids down for the weekend.  I'm just a little excited to see them. ;)
 Justin and Mandy and Jess and Mitch are also coming for the day and who knows who else will pop up to see us!

I ask that you all continue those prayers you have been so generous in sending our way.  A friend of mine said she didn't know how I was keeping it together.  I think it is the prayers, love, concern, and support from all of you.  THAT is keeping me going.  Plus, these four favorites of mine. :)

Thursday, November 7, 2013

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!!

Wednesday, November 6, 2013

Transplant Day

Well, it is finally over... Blakers has a new kidney!  Thank you to all of those involved in that process.  Thank you to Steph for wanting to be a donor!  Thank you to all the medical staff at UIHC that have cared for, are caring for, will continue to care for Blake!  Thank you to the surgical team for making this happen!  Thank you to our friends, family, and community for all of your support!  It was a long, hard, frustrating, joyful day!

Here is an update of how things went on transplant day:

It actually started the night before as Blake was admitted  We came up with a plan for his last night of dialysis which included a short 5 hours on his machine.  The night also included a try at cleansing his bowels which was unsuccessful other than keeping Aaron awake all night as they did 3 attempts at enemas.  Blake wasn't happy about this but he went right back to sleep.  Aaron on the other hand got little to no sleep.

The morning of transplant we were taken to pre-op around 7 am.  Sure enough, that little stinker who wouldn't poop all night decided that he would take care of that when we didn't have any diapers or wipes with us.  We handed him over to the nurse at 8 am and off to surgery he went.

Then... started the longest day ever.  We got very few updates throughout the day but when we did it always seemed positive.  Little did we know what was really going on.  Around 2 pm, it seemed like the clocks stopped moving. 

At 5 pm, they said they thought they had about 2 hours to go.  We thought we would be done around 5. 

At 6 pm, the day of surgery waiting room closed and we were sent up to PICU where we were told maybe another hour. 

At 7 pm, we were told maybe another 20-30 minutes. 

Around 8 pm, we saw the kidney surgeon.  She explained how the surgery had gone.  At some point, during the putting in of the new kidney there was some bleeding from a damaged artery.  That led to the new kidney now acting like a deceased donors kidney and didn't start working right away.  That was fixed and watched as they finished the bladder surgery.  That was probably a blessing since they still had him open and could watch it get to work.  It still led to an ultrasound after being brought up to the PICU to make sure that it was fully functional.

Around 9 pm, we finally got to see Blake.  He finally got to the PICU where we found out there was also a CLUSTER at the end of the surgery.  After closing him up, they did inventory and came up a needle short from what they started with.  An X-ray ensued, followed by another X-ray to make sure this needle wasn't in there.  Then they recounted and actually had 1 more than they needed...  whatever!  No needle in there so let Blake go.

So from 9-10 PM a whole team got him settled in to his room.  They did an ultrasound to make sure things were working. They kept doing the ultrasound and we were antsy so I asked our nurse to get our kidney doctor out in the hall because I thought I was going to throw up from not knowing.  Dr. Jetton said everything looked great!  It was like a huge weight had been lifted from our shoulders!

We then were able to really see him and kiss on him and talk to him.  He looked so good!  The nurse encouraged us, since Blake was going to be sedated, to both stay at the Ronald McDonald House last nite, so we did. 

We have to say a special thanks to Adam, Jill and Noah for keeping us occupied for the first part of the day.  Also, our friends who are like family -  Jay Smith and Emily and Sara Morgan who were with us through the hardest of times - the end.  Your support meant the world to us and I'm quite certain we wouldn't have made it without them.

More updates to come and I'll try to post some pictures.  Please continue to pray for good recoveries for both Blake and Steph!

Monday, November 4, 2013

The night before transplant...

We arrived in Iowa City on Sunday night and spent the night at the Ronald McDonald House, due to an 8 AM admit on Monday morning.  I can't lie to you, it was TOUGH leaving Jenna, Brody and Bowen at home.  Saturday night Jenna started with the tears, which made me cry too.  After assurance that we can talk in the morning and at night and even Mrs. deNeui (the elementary principal) would take out her phone and call us if they need us in the middle of the day, everything was well when we left.  Bowen, not so much, but I think he got better quickly.

Today we: got an IV put in.  Always a thrill.  Please note my sarcasm.  However, it only took two tries, one sweating Blake and two sweaty parents to get it in. :)  Labs were done  for both Blake and Steph and looked great.  Cross-matching with Steph.  An x-ray. Talks with both the transplant surgeon and the urology surgeon.  Blake is currently getting a drip to clean out his bowels.  Fun times...

Surgery is scheduled (supposedly) for 8:00 AM Tuesday morning.  They think they will take him down between 6:30-7:00 AM.   The bladder portion will be between 5-6 hours and the transplant will be 2-4 hours. 

How am I doing?  I'm actually doing pretty well.  I feel like we've always known that Blake was going to need a transplant and we've waited two and a half years for this.  We got our prayers answered in the form of Steph.  I can't say enough about her!!  She's just amazing.  Yes, you are Steph!  Steph and her husband, Isaac, stopped by a couple of times today to see us, which was so nice. If you haven't already, go read her blog here

So, here we are.  A long day awaits us, but we will hang in there and pray.  Thank you to every person that has sent us prayers, will send us prayers and continues to send us prayers!!!  I'm just overwhelmed by the love you continue to show Blake, Steph and our families!!