Wednesday, January 29, 2014


Anybody that knows me, knows I love quotes.  Not that every quote is fitting to every person, but sometimes I just read something and it really resonates with me.  Maybe it's like a song?  You hear one when you really need it and you're so glad you heard it because you can relate.

After a really rough week last week at the hospital, my head is back in a better place.  I'm being patient with Blake's kidney recovery.  We'll get there eventually, it is just going to take some time.  I really feel at peace with the process.

Anyway, here are 10 quotes that have really resonated with me lately.  Maybe one will strike a chord with you. :)

Today, was a pretty darn good day:
-Blake's creatinine went from 1.8 to 1.5.  That is a HUGE jump in one day!
-His BUN went down slightly.  Yep, that's that number I asked you all to pray about yesterday.
-Blake peed like crazy today.  It was such a beautiful sight.  :)

Tuesday, January 28, 2014

Ultrasound, the "D" Word and Random Photos

Before I start, let me  just say that these photos are from a random night in December when Aaron was reffing.  One of those 11 days we were home.  The kids thought they needed a fashion show and needed to perform some songs and read books.  I found these today and they made me smile. :)
 Overall, Blake is doing pretty well.  They did a "steroid burst" over the weekend to try to help his kidney along a little bit.  That just means high dose steroids, which meant a not-so-happy, sleepy not-very-interactive Blake.   I could tell a difference in him on Monday and an even bigger difference in his demeanor today.  Much happier boy!
Our day started with his labs, as is generally the case.  His white blood cell count had dropped to below normal (cue my panic attacks), so they cultured his blood and urine and held one of his meds to see if it made a difference.  It DID!  Thank goodness!  So far, the cultures are negative too.
 Dr. Jetton, our nephrologist, rounded today and said that Dr. Stewart, the transplant surgeon, wasn't happy with the blood flow throughout Blake's kidney in the ultrasound that was done on Thursday and wanted to repeat that.  If she didn't like what she saw, it was another test involving some contrast to watch blood flow.  Also, they threw an ECHO in to check Blake's heart because of his recent high blood pressure.
 I saw the nephrology crew heading down the hallway towards us after the tests.  Can I tell you that it gives me anxiety when they are all heading towards our room?  You never know what they're going to say.  Anyway, it was good news!!  Dr. Stewart thought the blood flow looked BETTER than it did on Thursday and his ECHO was unchanged from the last time he had one done.  Woo-Hoo!
 And, as soon as I was happy, Dr. Stewart came and talked to me about the results herself after the nephrology team left.  UGH.  Why must they build me up to just freak me right back out?
 In addition to Blake's creatinine, another number they watch is his BUN.  It's another one of those kidney function numbers.  Blake's is pretty high right now.  So high that in the back of my mind, I silently plead that they don't mention the "D" word...dialysis.  Dr. Stewart verbalized my worst fears by saying that if his BUN continues to rise that dialysis, "is not out of the realm of possibilities." *sigh*
 Here's the thing.  There are only so many spots in your body you can do hemo dialysis.  Blake is two years old.  We HAVE to save those spots because he will probably need them later in life.  If you are the praying type, can you please pray that his BUN (and creatinine) go down?  We really, really need it to.
 Besides the "D" word being mentioned, Blake really did have a good day.  His labs overall were much improved.  Dr. Jetton was happy about that. 
 This kidney thing, ATN, that they have diagnosed him with, it's going to take time.  Time for his kidney to fully heal.  People ask how long.  I don't know.  Dr. Jetton mentioned it could be a couple of weeks before we see his creatinine drop.  I know, right?!
On the plus side, Dr. Stewart complimented me on my patience for the last almost-three months.  Dr. Kieran, our urologist, said I was one of the least hysterical patient parents she's ever had so HEY!  I have those things going for me.... ;)
 That's about all from Iowa City.  We just appreciate all of your love, prayers and support for our entire family!  We can't say it enough.

Sunday, January 26, 2014

Blake Blog Catch-up!

Alright, so there's been a lot going on with us and I haven't shared it on the blog.  Why?  Because I have been in a really bad place emotionally this past week and I just didn't feel like writing because I was so cranky, depressed and frustrated and I thought nobody would want to read that, so I just didn't write.  However, I'm back, so I will try to fill you in in the shortest and most direct way a timeline of what has happened to us since we got home.

Monday, Jan. 13th - Discharged!  HOME!
Tuesday, Jan. 14th - HOME!  All day!  Glorious!

Wednesday, Jan. 15th - Home health nurse out to do labs.  Dr. calls in the afternoon saying Blake's white blood cell count is high.  Asks how he is looking and acting (great!) and asks us to go to Ames for a redraw.  Go to Ames.  By the time we reach the outskirts, we get a call saying we need to come to Iowa City because his WBC count is even higher.

 I tell Blake I'm considering becoming a Cyclone because I'm so sick of Iowa City!!  We were just there for 39 days and back we go.  After lots of tears and some packing, we head back down to UIHC.  Arrive around 7:30.  Cultures taken from everywhere (urine, blood, drains).  CT scan done.

Thursday, Jan. 16th: Nurse getting ready to draw morning labs when she gets a text.  Goes to call back the number.  Comes back saying that it was the lab and that Blake's urine and blood cultures grew: GRAM NEGATIVE RODS.  Yes, that same freakin' thing from the scary day.  Those grew in 12 hours.  I say a silent prayer of thanks we came when we did and that Blake is happy as a clam.

Friday, Jan. 17th-Sunday, Jan. 19th - Blake is still happy.  Antibiotics have brought his WBC back in normal range.  On Sunday, his creatinine (kidney function) has gone up to 1.0.

Monday, Jan. 20th - Thursday, Jan. 23rd - Blake's starts peeing less.  His kidney function numbers are getting worse.  Everybody is concerned he may be experiencing rejection.  His blood pressure is super high (systolic in 170s) and the bp  meds aren't even really doing anything.  His tacro level (another important kidney number) is "undetectible".  Not a good sign.

We did a Mag 3 scan to see if urine was flowing the way it needed to or if there were any obstructions.  There wasn't.  On Wednesday, the doctor decides Blake needs a biopsy to see what is going on with his kidney.  The problem?  His blood pressures are way to high and if they stuck the needle in him, he could have bled too much. to the PICU we went to start an IV drip for his blood pressures.

Biopsy shows NO REJECTION!!!!  Diagnosis: acute tubular necrosis. Basically, inflammation in his kidneys caused probably by the infection.  We can't say for sure.  Maybe some of the meds he was on too.  It can have numerous contributing factors.

The good news is it is curable, with time.  The other good news is that a complete stranger named Steph gave our Blakers quite a resilient kidney that just keeps on keepin' on. For that, we are thankful. :)

As I type this, we have been at the hospital for 71 of the last 83 days.  Think about that.  That's over two months.  It's a long time with a crap ton of complications.  We ARE going to get to go home and stay home.  It's going to happen.  I don't know when exactly, but it will. Some day, we'll look back at this and wonder how we ever made it through...

"But the Lord stood with me and strengthened me..." 2 Timothy 4:17

Tuesday, January 14, 2014

The way I see it...

What Happened.  And we're HOME!
Remember that one time when I told you that this ain't my first rodeo and I was not getting my hopes up about a Thursday or Friday discharge? Well, there's a reason for that. So much has happened since we met here in this little corner of the paper...

Last Tuesday, I noticed that Blake's urine output wasn't as high as normal. Not once, but twice I had our nurse page urology for them to come and look at Blake at to make sure that the catheterizing was going ok and I wasn't doing something wrong. The first time I got told everything was fine. The second time (four hours later or so), the urology nurse said the staff urologist needed to be page. From there, it was crazy town for awhile.

The urologist thought that something was indeed off kilter and “because it was Blake” (that's a coined term at UIHC by the way) we were going to have the “million dollar work-up done.” That included labs, blood cultures, urine cultures and an ultrasound of his kidney and abdomen. Whirlwind. 

Labs were drawn and they carted us off for the ultrasound. Now, keep in mind that Blake was acting completely fine. Actually, he was smiling with the doctors and nurses and that never happens. We got to the ultrasound and I was trying to get any indication of if anything was wrong. I swear I should know how to read these things by now, Blake has had enough of them! 

We got back and the nephrologists (kidney docs) were waiting for us. They said his labs were all wonky and they didn't believe them and they were going to redraw them. Redraw number two showed the same results. The doctors were scratching their heads that anything was wrong since Blake looked so good.

The numbers that were way off were his kidney numbers – his creatinine (measure of kidney function), his BUN (measure of how the kidney is filtering things), his potassium (dangerously high and can cause heart problems) and his sodium levels.

The night was a nightmare. They were trying to pull off potassium by making him pee a lot. They were giving him huge amounts of fluid to try to get him to pee. About 3:30 AM I felt a tap on my shoulder. It was the nurse saying, “The doctor's on the phone and wants to talk to you.”

Hospitals 101: that's never a good sign. The doctor said that because his blood pressures were pretty low (not overly low, but Blake low) and he wasn't peeing like they wanted. They were afraid his kidney was going into rejection. REJECTION. After everything we've been through, I had to hear that. They were moving us up to the PICU.

Sick-to-my stomach and shaking, I called Aaron and told him the news. It was all I could do to hold myself together. I also called Steph, our donor, because I thought she deserved to know.
After a move to the PICU, they ordered Blake's second EKG in the last six hours and just kept an eye on him. Gradually he started to pee a little bit more, but not a lot. 

Aaron came down in the morning to be with us, which was needed. That emotional load of remembering everything they tell you was shared instead of it all being left up to me. Blake was extra happy to see him. Blake still, through it all, remained happy. The PICU nurses actually loved seeing him like that. 

The docs came to tell me they think they know what happened: they tapered his steroid dose too quickly, which messed with his sodium levels (he was peeing off too much of it). Lack of sodium dropped his blood pressure, which his kidney didn't like and in turn wasn't producing the urine that it needed to. Clear as mud?! Yeah, I know, it's confusing. 

Anyway, on Thursday around supper time we moved back to the regular floor as things were getting back to normal. We were told possible discharge on Monday. Over the weekend, his blood pressures were super high and I panicked that we wouldn't be able to go home. His kidney numbers went up again a little bit. Enter me, crying in the bathroom after hearing the results. I just wanted us to go home so badly. I wanted Blake to catch a break.

The transplant surgeon kind of talked our kidney doc into letting us go home. Which I appreciated. I heard her talking on the phone, “I wouldn't advocate for just any family. Jamie knows what's going on and she will call if something is wrong.” 

We were then told at 9:00 AM on Monday we were being discharged. At 6:10 PM that night, we were finally leaving the parking ramp. It was a long process to get out of there, but such a great feeling!
The way home wasn't without its excitement. I got a flat tire just west of Cedar Rapids. Luckily, Brad Sara and Emily Morgan, who moved from State Center over that direction, came to my rescue. Once Brad got my tire changed I went to start my car was dead. Battery was toast. So, we had to deal with that. Eventually, driving 50 mph, Blake and I pulled into the driveway at 9:15 PM.
WHEW. Nothing is ever easy is it?! I could not make this stuff up. I wouldn't want to. 

I cannot tell you how amazing it was to sleep in my own bed with my own blankets and my own pillows. Ahhhh...bliss!! 

We have a lot going on with Blake at home, which I'll tell you more about next week. I know this is getting long. Thank you again for all of your love, support and constant encouragement. I'm just praying we get to stay home again for a long, long time, but that's just the way I see it.

Monday, January 6, 2014

My word for 2014

I would like to say something super great that I haven't said before over the past month or so, but I got nothin'. We are, you guessed it, still in Iowa City. However, as I type this it is Monday and I was told that the goal is to discharge us on Thursday. Of course, you also know that this ain't my first rodeo and I refuse to get my hopes up and will only be excited when they say, “Guess what? You're going home today!” Until then, we wait.

Last week they did in fact remove Blake's nephrostomy tube and we haven't had any major issues with that. On Thursday, he got his port and that is such a nice thing to have. Surgery was quick and no more pokes to my baby boy is a good thing. 

On Friday, the nurse taught me how to catheterize Blake. I think I've told you before he will have to have a catheter for life. However, it's not quite as bad as you think. They made a small hole next to his belly button and created a channel using his appendix. The little hole leads to his bladder. We just have to stick a small tube in there and drain him. When we're done we pull out the tube and throw it away. That's it. No tube in all the time (except for bedtime). No leg bag or anything like that. In the scheme of everything, it's not ideal, but I don't think it's a huge deal. 

Blake will have to go home on IV nutrition, so they are working to get him the right mix of nutrition right now. His glucose has been just a little high. Blake might have to be hooked-up for 16 hours a day, which again, isn't ideal, but at least we'd be at home! I love that word...HOME. 

While I've been sitting in the hospital and had all this time to think about things I've been thinking about 2014. A new year (even though it doesn't completely feel like it to me since we haven't had Christmas) and a new slate. I saw on some blogs I follow that these bloggers picked one word as their goal for the new year. It made me think about what word I would choose.

After much thought, I chose the word EMBRACE. Not the literal meaning exactly, but I want to embrace life. All parts of my life. The good. And the bad. In December, I saw how quickly life can change. I don't want to have regrets about things. I want to enjoy my husband. My kids. My friends and family. The people I meet. The experiences I have. The goals I want to meet. 

I saw this and thought it seemed fitting. It's from the movie, “The Curious Case of Benjamin Button,” which I haven't seen, but I liked this quote any way:
“For what it's worth: It's never too late or, in my case, too early to be whoever you want to be. There's no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you're proud of. If you find that you're not, I hope you have the strength to start all over again.”

So, what's your word for 2014? Joy, healthy, opportunity, unpredictable, thrive, amaze, transform, fearless... Whatever, it is, I hope it's the best year for you yet, but that's just the way I see it.

Thursday, January 2, 2014

This week...

 We have taken a couple of big steps of progress here in Iowa City since the start of the week.  On Monday, Blake's nephrostomy tube was pulled from his kidney.  They put some contrast in and everything looked healed up.  The nephrostomy is the drain that has been in his kidney since the return trip to the OR the week after his transplant. 

We then had to wait a couple of days to just make sure nothing crazy happened.  Normally, people wouldn't be worried and probably have put his port in on the same day, but this is Blake.  If we've learned anything, it's that our Blakers doesn't follow a rule book. ;)
Because of the holiday, we had to wait to get his port put in today (Thursday).  The port is needed in order for him to get adequate nutrition at home and also will be such a huge lifesaver for the frequent lab draws that he has.  No more pokes!!  We (Aaron, Blake and I) were getting pretty frustrated with lab draws and the lack of ped-friendly lab people.  UGH...  
 The port placement went beautifully.  By the time I got up to recovery he was awake and staring and the door waiting for me to get there.  I thought he would be groggy, but he wasn't.  Blake gave me the, "Seriously, I'm in this place again?!" look. They took us down to our regular room after about 20 minutes.
 Oh and yes, Blake is a fall risk since he hadn't walked for so many days.  He is walking short distances now holding onto our hands.  He is still weak and SKINNY.  Seriously skinny.  He is usually around 15.5 KG and he is down to 13.5 KG (That's 4.4 pounds lighter than normal and that's a lot).  I'm so excited to start the IV nutrition and get him back up to fighting weight. :)
 We were told 5-7 days after the port placed we could go home IF everything was going well and his labs looked good.  He goes off his anti-biotic that he's been on since the scary day, so they will be watching his infectious numbers very closely after he goes off that.
 Other than that, he is doing just so incredibly well.  Considering where we've came from, he is making leaps and bounds.  He is happy and smiley and wants to go for walks and sit on the couch and play the drums and give the nurses the stink eye!