Entertaining ourselves...

So, we've been spending a lot of time at the hospital these days with all of the kiddos.  Aaron and Jenna, Brody and Bowen were maybe going to go home on Friday, but Aaron asked the kids and they said they wanted to stay.  We are trying to entertain them as much as we can. 

 We like to go for walks.  It's nice that Blake isn't connected to an IV for a portion of the day, so it's easier to get out and about.  We like to go to the 8th floor and look at the helicopter.  It does have a Hawkeye on it, did you know that?!  The kids noticed right away.

 On the peds floor where we stay they have a lot of toys and stuff and Bowen found this three wheeler that he likes to ride in the halls.  Well, I had a good/bad idea that it might be fun to take it down this big ramp of a hallway.

 Yep, it was fun alright.  Kind of gave me a heart attack a few times.  But, I got a workout to, running alongside. ;)

 Jenna's legs might be just a bit long, but she didn't seem to care.

 And of course, Blake needed a turn too.  Blake-style though.  We got some good smiles.

Super fun.  And, one of those things that you can probably only do on the weekends because there aren't many people around.  If we did it during the week, they might kick us out.  Which, come to think of it, might not be such a bad thing...

We walk.  And walk some more.  And burn off some kiddo energy.  I would say, all things considered and under the circumstances, the kids do really, really well.

Short and sweet Christmas

The weekend of the 14th, my sister texted me about Christmas.  Which was supposed to be at our house on the 21st with my side of the family.  I told Jess I had no idea and she could figure it out.  So, everybody did!  Which was awesome.  Everybody came to Iowa City so we could have Christmas.  Despite the impending snow. 

 Aaron said he would stay at the hospital with Blake and the rest of us had Christmas at a hotel.  It was crazy and chaotic, but we were together.  It's never easy to contain as many boys as what we have in the family.

 One thing about it - we never starve. Ha!  No, seriously though, this is only half of the food.  We had quite the spread of soups, dips, sandwiches and goodies. 

 My nephew McCoy was hamming it up.  Ho! Ho! Ho!

 Aunt Mandy is pretty great too.  She was thoughtful enough to pack decorations like this tree, stockings and decor for the tables. 

 

Bill and Mom.

 The whole group!

 I watched all the kids while Justin, Mandy, Jess and Mitch went up to the hospital for a couple of hours to see Aaron and Blake, which was nice of them.  After a toast by my brother that had most of us crying, we headed to the pool.  This pretty much sums it up - craziness!

I can't say enough how grateful I am to our family for coming to Iowa City and making adjustments.  It was SO GREAT to hang out with them all. :)

A quick Blake update:

-Moved off of the PICU to the regular floor

-Taken his first steps in 20 days

-So happy, getting stronger and ornerier by the day

-Blood cultures have remained NEGATIVE!!! woo-hoo!!

This stupid infection

I know that my title shouldn't really be as negative as I have it.  But calling this infection stupid is the nicest thing I can do at this point.  We have made really good progress, but after talking to all of the teams today, we still have some hurdles.  Look at this kid below.  This was medicinally paralyzed, sedated, breathing tube, abdomen open, a million lines everywhere, the whole works. 

We haven't had to use this machine since a week ago!  This was the CRRT (hemo dialysis) machine.  Wonderful news! 

 

We've also significantly cut down on the number of IV meds and lines that Blake has.  This was the biggest I've ever seen his IV pole, even after transplant. 

 GOOD NEWS:
-The breathing tube came out on Monday
-His arterial line came out on Tuesday
-His dialysis catheter came out on Tuesday
-Not sedated anymore and weaning him off of his sedation/relaxation/pain meds
-He smiled a big smile at me and called me, "mom" for the first time since all this started. :)
-His kidney numbers aren't where they need to be, but they are headed in the right direction.  He is peeing like a champ!

Bad news:  I'm going to try and explain to you what is going on with this stupid infection the best I can.  I may confuse you more, but I will try my best.  Ok, so Blake's white blood cell count and other infectious numbers are moving in the right direction.  However, they have taken blood cultures and two of them have come back positive with the same stupid infection (gram rod negative) that caused him to be septic.  It generally takes about 72 hours (unless it's a really aggressive bad infection) for a culture to grow something.  So, Sunday's did and also the one on Monday we just learned today grew something.

They took numerous cultures on Sunday and only the one grew something, which made me think the infection was just on that one line.  The doctor was quick to point out that that pretty much meant nothing.  Infection does like to harbor around foreign objects in your body and plastic, but she pretty much said it didn't necessarily mean anything.  

The culture came from his PICC line, so they are taking that out.  They will put in just a regular peripheral IV and continue to take blood cultures and see what happens.  They think that he is going to continue to grow stuff on his cultures. 

I talked to the PICU doctor about the timelines of things.  After Saturday's scare that culture obviously grew the infection.  Sunday's did too.  BUT, everything stayed negative UNTIL they took him back to the OR to close his belly.  That Thursday of the belly close his cultures started to come back positive again.  What exactly does this mean?!  That's exactly what I asked the doctor.

She firmly believes that there is still infection harboring somewhere in his abdomen and when they went in for the wash out and belly closure that stirred everything up again.   As I type this, they are getting ready to put in the regular peripheral IV.  Once placed, the PICC line comes out.  We'll wait and see.

It just feels like everybody believes the infection is in his abdomen. If that's the case, it sounds like there are three options: 1. Figure out a way to treat it with stronger/more/different antibiotics 2. Have interventional radiology get rid of it if possible and 3.  Open up his abdomen.  Again.  I pray like crazy that we don't have to do this again.  It pains me to even type this out.  The worry is that as soon as Blake goes OFF his antibiotics this stupid infection will rear it's ugly head again. :(

I'll be honest.  This morning was rough, talking to the teams.  I wanted to just cry.  I was texting Aaron my frustrations.  I just wanted to yell at the top of my lungs that my Blakers deserves a freakin' break already.  Pretty much playing the poor me thing in my head.  And then it happened...

PT came in and we put Blake in the chair for awhile.  He is EXTREMELY weak.  We were watching home videos on the iPad and it perked him up a little.  Then Blake, my hater of lint child (weird I know) saw a white piece of lint on his black shirt, got this funny look on his face, pointed at it and said, "Mom! Mom!" Those are the first words he's spoken in 13 days.  At THAT moment, I got my head back in a better spot.  I saw my Blakers and I just kept thinking that we need to do whatever it takes to get him back to normal.  Even if it means a longer hospital stay.  Even if it means another procedure.  I miss that little boy like crazy!!

So, I'll keep you posted.  Like I said, I probably confused you all more, so ask questions if you need to.  Please pray to rid Blake's body of this infection once and for all!!!

#keepfightingblake

#builtblaketough

Mostly progress...

I realize I'm way behind in updating you guys on what's been going on with Blake.  People have been texting me all week and I continually respond with "sedated and stable."  That's the answer in a nutshell.

Since Saturday's scare, they have indeed kept Blake sedated.  He still has his breathing tube, even though he's at room air level (which just means he's basically breathing on his own).  Blake started CRRT, which is a gentle, continious hemo-dialysis.  They had to put the catheter in his neck.  The catheter is very positional, which means there is no way he'll handle being awake and having it in. 

They took him Monday for a belly wash out and recovered the opening in his abdomen.  Happy with the amount of fluid dialysis had taken off (he was up 4 liters!!) transplant took him back to the OR today for another belly wash to stitch him back up.  Dr. Stewart wasn't sure if she would be able to do a partial closure or a full closure, but she was able to close him all the way and "with ease" she said.

So, things were going well.  Prior to the OR trip he had come off his "pressers" which are the drugs that keep his BP up.  Well...he got back from the OR and his blood pressures were low.  Systolic in the 80s instead of 100-110 where they would like it.  His temperature went up slightly.  Although it's not normal, they figure that it just has something to do with his insides being washed out.  They think a bacteria got in his blood. *big sigh*  The good news is that he's already on a broad spectrum anti-biotics. 

The next step, is for Blake to be able to be awake.  That would be so great.  I miss those blue eyes!  I miss that ornery smile.  At some point they will shut off the hemo dialysis and just see how his urine output is.  We're back to praying for pee!

So friends, please pray that they figure out this misstep and we can get back on track. 

#keepfightingblake

#keeppeeingblake

The scariest day ever

This is going to be a long one. You may need to grab a coffee. Or take a break midway through. I don't even know where to start. We had the biggest scare ever with Blake on Saturday. Biggest in that, we didn't know if he was going to make it. He got really sick, really fast. It was terrible. Here's a timeline of how this came to be:

Thursday: Happy Blake. Playing and active. Jumping on the bed. Wreaking havoc to the Christmas tree with Bowen. Me feeling so happy at his progress.

Thursday night/Friday morning: I check on him a couple times during the middle of the night and notice he doesn't have a ton of pee. I automatically worry.

Friday morning 6:30 AM: I call our kidney doctor and express my concern over the lack of urine. He notes that Blake was a little dehydrated on Tuesday and since he had puked a few times, that's probably all it was.

Friday 7:00 AM: Blake gets a fever of 101.3. I report this to the doctor.

Friday 8:45 AM: Labs taken in Des Moines.

Friday throughout the day: I work really hard at getting Blake hydrated, running him on slow feeds through his feeding tube. Trying to avoid any puking. There's still not a lot of urine and his fever is down.

Friday afternoon: I haven't yet heard the results of the labs we had drawn. After taking his blood pressure a few times, I'm getting concerned that his heart rate is pretty high (160s). I think his heart is working way too hard and I think his belly is getting distended. With the low urine output and distended belly I immediately panic that he has another urine leak and that's what's going on.

Friday 4:00 PM: I call urology and express my concern. Again, I'm told that he is probably just dehydrated and he doesn't need to be seen. After hanging up the phone, my stomach is in knots.

Friday 4:30 PM: I get a call from our kidney doctor that said they got Blake's lab results back and his white blood cell count was 1.8. The conversation went like this:

Doc: Blake's WBC count is 1.8.

Me: 1.8 what? (This was very low compared to normal). What does that mean?

Doc: It means he could be septic.

Me: What does that mean exactly?

Doc: It means he could get really sick quickly and we need you to come to Iowa City now.

I immediately get worried. I start packing, blinking back tears the entire time. Tears because I hate leaving home. Tears because I just thought, here we go again.

Friday 7:30 PM-3:00 AM: We get to UIHC and report to the regular floor. They put in an IV. Order an ultrasound. Order a CT scan. Do vitals. Culture his blood. Culture his urine. All of that sort of stuff. Listen to results, expecting there to be a lot of fluid in his belly. There isn't. The doctors don't seem to understand what is going on. His heart rate continues to go up and is now in the 180s. The doctor tells me he wants to move Blake to ICU. I immediately agree.

Saturday 3:30 AM: In the PICU. They have now ordered an x-ray to look at his chest. His temp has spiked to 104.2. 

Saturday 6:00 AM: The PICU doctor tells me that she thinks Blake needs to be sedated and have a breathing tube put down his throat and take out and replace one of his drains that is infected. He does indeed have a blood infection. She says this is a very risky procedure and they were unsure of how his body would react to having a breathing tube. I call Aaron and have the doctor explain all of this to him. He heads down right away. The breathing tube goes in ok. His blood pressure drops, but they bring it back up with meds. They get the central lines put in. 

Saturday 9:00AM-1:00 PM: This is a total blur. I have no idea what happened at what time. I just know that Blake started to get really bad, really fast. Thankfully, we had two nurses that actually do dialysis and knew Blake. They never left the room. Blake's blood pressure started to drop and they were right on top of it telling the doctors.

He was on three different meds to keep his blood pressure up and in stable range (top number 80-90). They kept increasing the dosage and nothing was working. They should have helped immediately. They weren't doing anything. Blake's color was very gray and his feet and hands were freezing.

At some point, Aaron asked the doctor, “This is really bad isn't it?”

She said, “I honestly don't know if he will make it through this.”

I will never forget that moment as long as I live. My heart just sank. I thought I was going to be sick. Aaron and I just cried. It was the most helpless feeling in the whole entire world.

They did an EKG to check his heart. Aaron and I were right there by the bed holding his hand and talking to him. I kept whispering in his ear, “You keep fighting Blake. Do you hear me? I love you and you need to keep fighting. You can do this.”

You know it's never a good sign when three of your doctors have tears in their eyes. Or your dialysis nurse is hugging you and crying. That's what scared me the most. They told us they would do everything that they could and I told them, “If anybody can get through this, it's Blake.”

The PICU doctor had actually prepared us that he would have to go on ECMO, which is basically life support that does the work for your heart and lungs. That was the last ditch effort for Blake. They moved him two doors down in the PICU. He was so bad and so fragile they didn't feel that he could be moved all the way to the OR. 

We sat there and just prayed. I couldn't stop thinking about Jenna, Brody and Bowen. I kept thinking that nothing could happen to Blake because he completes our family. And he has already made it so far. 

Long story short, for whatever reason, they sent a probe down his throat to check his heart one more time and it was just a little bit better. The team decided that they would cut his abdomen open to try to relieve the pressure that was continuing to build in there, hoping that this gave his heart and lungs some reprieve. They did it and they almost instantly saw his blood pressure come up!

In the end, they decided they could avoid ECMO. That was such good news. By the time they let us in to see him, he was pink in color again. It was such a relief to see him that way.

Currently, his abdomen is still open (there's gauze covering it) and he is sedated and medicinally paralyzed. They are starting him on dialysis because his kidney isn't producing enough pee. This is not uncommon at all considering the trauma it went through. As of now, the doctors aren't concerned that the kidney won't bounce back. 

A huge, huge thank you to all of you that were sending up prayers on Saturday on our behalf. If you thought it was weird I was posting things to Facebook, I just thought if people knew, they could pray. I bet you God was pretty overwhelmed by all the Blake prayers. 

It's going to be a long road to recovery. LONG. The poor kid has been through hell and back. The thing is, I don't care how many tubes he has in. He is here. Praise the Lord, he is still here. And that's is what ultimately matters, but that's just the way I see it.

Fall Photo Dump

I realized that I took some pictures pre-transplant that I never posted.  I tend to avoid random "photo dumps," and usually like to have themes of some sort to these posts, but what the heck.  My theme is random!  Let's just go with it, shall we?

  

A little soccer in the front yard this fall...

 Always tackling.  Always wrestling.  THANKFULLY, I think Bowen gets that Blakers is out of commission for awhile. 

 The weekend before Halloween we went over to Iowa State for a pumpkin painting dance marathon event.  It was crazy nice out and we had so much fun!

 When it comes to the most artistic of the two of us in painting or drawing, Aaron wins the prize.  The kids always ask him to draw things because they can never tell what I'm drawing. Haha.

 Aaron made a green #keepfightingblake pumpkin.

 Alexandra is our family contact for this year.  She has been over a couple times to the house and the kids really like her!  Plus, if you do cartwheels with Jenna, you're in like flynn. 

 If there's ever synchronized cartwheels in the Olympics, these two should totally try out. ;)

 You can't tell by this picture, but Dillon gets our boys beyond wound up!  He's like the fun older brother or something.  He is awesome.  This was the calm before the storm...

 A few pics from Iowa City...

The first weekend after Aaron and the kids left me.  

 Cheap tickets to a Hawkeye game against a no-name opponent?  The kids loved it!  Bowen kept looking for Herky and didn't watch the game, but still...

 The last weekend we were at the hospital I was pretty much reaching my limit.  I was so sick of the hospital.  We had just learned that we had to stay another day.  I had to get out of that place, so these three and I went to the mall.  We rode the carousel, spent time at Barnes and Noble and got slushees at Target.  That's a pretty good afternoon.

 Pee.  Glorious, beautiful pee.  We love Blake's pee.  We ooh and aaahh over it.  I wish I were kidding..

Thanksgiving Day.  We were so thankful to be home.  So thankful for just the six of us.  I made my first turkey with the help of Jenna and Brody.  Macy's Thanksgiving Day parade.  Football.  Food.  Saying what we were thankful for.  Movies.  And we did all that in our sweats.  We couldn't have ask for anything better. 

I went on my first run in FOR.EV.ER.  Over a month.  It was hard.  I couldn't breathe.  It felt good to do that though.  To have some time by myself with my own thoughts.  I'm bummed I can't run more.  I need to quit feeling guilty about this.  I have a lot going on with Blake and it is what it is, right?!  Right.

 Aaron surprised the kids with a trip to Ames Sunday afternoon for the Cy-Hawk wrestling match.  The Hawkeyes won and I think the kids had fun!

That's what we've been up to.  Adjusting.  Continually adjusting.  Trying to get into a routine.  Enjoying the chaos at home!

The way I see it...

Home

HOME. We are HOME!! Together. Under one roof for the first time in three long, stressful weeks. They prepared us for a Sunday (the 24th) discharge and we had our hopes up and then transplant and the kidney doctor on call said no. I was crushed. Aaron was crushed. The kids were sad. Monday, it seemed like we might be getting discharged, but the transplant surgeon had the final say and she was coming in at noon. I was so nervous! Luckily, she gave us the green light for HOME!!!

It was no small task getting out of there, let me tell you. Coordinating everything was crazy. The pharmacist going through all of Blake's medications was crazy. To say I am feeling just a tad overwhelmed by learning all of these new meds is an understatement. I think we are at 12 bottles of meds, plus a shot to help him boost his hemoglobin (which he was on prior to transplant). Once we get post-transplant for awhile, some of these will be able to go away. It's just right now I have to tell myself to take a deep breath and take my time and know that Iowa City is just a phone call away.

Blake also has three drains and extra hardware that he came home with. His appendicovesicostomy (fancy word for the type of catheter he will use for the rest of his life) that includes a huge drain bag, plus his nephrostomy (drain coming out of his kidney that will be in until his kidney has healed), plus a JP drain (which is collecting random fluid from his abdominal area while he heals). Eventually, these will come out. Right now, it's hard for him to even walk around because we have to deal with these things. Again, it's just for a small window of time and we know that.

Overall, things are going well. Blake is still in a lot of pain, but he had two major surgeries in two weeks. What he went through would be a lot and very painful for anybody. His blood pressures are good and what makes me happiest – he's peeing like a champ!

The things I have learned the last three weeks has blown my mind. A couple days before discharge I thought that I should have written down in a notebook every time I learned something new. I'm sure I'd have a notebook full of things by now.

I also have to give my hats off to the medical professionals. I don't know how they do it. The PICU was so hard for me. The things I saw. The stories I heard. A one month old they were trying to keep stable long enough to get a heart transplant. The two-year old whose pneumonia took a turn for the worst and she was on life support. Blake's neighbor, who, whatever he was battling, didn't make it. The fact that there are people out there that deal with these things on a daily basis is astounding to me. I couldn't do it. The surgeons who put in at least a 16 hour day on Blake's transplant. I had to trust them with my child's life. I wouldn't want that pressure. Isn't it great that we all have different talents in this world and we can contribute in different ways? Each one of us really is special and does have unique talents. Thank goodness for that. I'm thankful for that.

I'm adjusting to life at home. I came home and was greeted to baskets of laundry (all clean, but unfolded, just like I do things) and it was the best feeling ever! I'm not even kidding. It just seems fitting that we got to come home the week of Thanksgiving. Happy Thanksgiving Enterprise readers! I'm thankful for your support and prayers for our family. I think it's pretty safe to say that there's never been a year that I have been more thankful, but that's just the way I see it.

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. :)