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... :)  

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!!!

Big Blake Catch-up

I am so far behind in blogging about Blake.  Again.  *sigh*  This whole balancing everything is challenging and so I will just update you when I have time.  Like now, because we have all the kiddos in bed and I'm actually not falling asleep at 9:15 PM.  Haha.

Here's a bit of a timeline of events:

Thursday, February 6th: We got to go home.  Things going well, until...

Monday, February 10th:  We have labs done at our house by a home health nurse.  She tells us that they will fax results to both Iowa City and to Aaron at school around noon or a little after.  At 2:00 PM I can't take it anymore, so I call Ames and ask if his labs are done.  They are and I ask for a few of his numbers: creatinine, BUN and his white blood cell count.

Conversation went like this:
Me: Can you tell me his WBC?
Nurse: 23.4
Me: 23.4?!
Nurse: 23.4
Later in the conversation...
Me: So his WBC is really 23.4?
Nurse: Yes.

Okay, yes I was annoying, but hearing that number I knew we were heading back to Iowa City.  I called Aaron because it was his prep time and just had a total breakdown.  Lots of tears.  I didn't want to go back.  I'm so sick of the hospital!!!

Anyway, we got to IC about 6:30 PM.  They took blood and urine cultures as they always do and started him on an antibiotic.  The night was uneventful - the best kind!

Tuesday, February 11th: The doctors round and say that they did something "bold" and have put Blakers on "23 hour observation."  I told them that since we're always there for months at a time they needed to tell me specifically what that means.  They said if his labs were still decent and his vitals continued to stay stable they would send us home on antibiotics THAT DAY.  Say whaaaat?!  Awesome.  We got to go home!!  Short and sweet.

Thursday, February 13th: Clinic day  in Iowa City.  Blake's creatinine is 0.6, the lowest it has been in a really, really, really long time.  Great news for that kidney function.  All of his other numbers are good.  His WBC was stable.  Boo to that.  Dr. Jetton said because he is already on antibiotics and he is stable and not running any fevers, we got to go home.  But, for her peace of mind we were doing another round of urine and blood cultures.

As of today, Monday, the urine culture and blood cultures have grown nothing.  Praise the Lord!

Tuesday, February 18th:  Labs with the home health nurse in the morning. 
Wednesday, February 19th: Clinic Day in Iowa City.

I'm continually encouraged by Blake's stable vitals and happy demeanor.  If I had to choose a word to describe him since coming home it would be THRIVING.  The kid is just a different person.  Physically and emotionally so much better.

When we got home, it was basically like having a baby again.  He couldn't sit up for long periods of time on the floor without toppling over.  No walking unless he had help.  Now?  He gets off the couch and walks around by himself.  We can see him getting stronger every single day.  Plus, he's just so happy to be around his siblings again!!! 

Alright...hopefully I will not go so long in-between updates again.  Or other blogs I need to do, like Dance Marathon that was almost a month ago (!!!) or our snow day today or other things... ;)

Four things...

1. COFFEE & CHOCOLATE...are my love language!  I really have the BEST people to call friends.  One gave me some really yummy chocolate and the other a Keurig!  I'm not even kidding!  I was so excited.  Everybody that has seen me with it around the hospital says, "Oh...that's such a good idea."   I'm also quite certain that the coffee place in the hospital has noticed my lack of business. And yes, I'm THAT mom with her kids' pic on her coffee mug.  ;)

2. CHARACTER COUNTS!  Brody was awarded his very first Character Counts award at an assembly last Friday morning.  I was so sad I wasn't there for his award, but luckily Aaron got to head over to the elementary and not only got this picture, but videoed it for me too!  So proud of Brody!

3. THE WEEKEND/BLAKE UPDATE:  Because of the snow, it delayed Aaron and the kids coming down early Saturday morning.  Aaron told me they were going to come down for the day Sunday and I understood, but was still bummed.  Well...they surprised us!  They walked in Blake's room just before 3:00 PM.  We were both so happy to see them!

So, we are just kind of hanging out at the hospital.  "Tweaking things," the doctors like to say.  Blake's blood pressures appear to be under better control.  His weight went down and then back up. They are giving him some lasix (a diuretic) to help his kidney pee some more to get off the excess fluid. 

Really...that's about the extent of things.  He is still on large doses of steroids (see the proof in his cheeks!).  His creatinine has been around 1.0 and BUN in the 50's for a few days now.  The nephrology team thinks it may just be his new normal.  He may never get to that creatinine of 0.3 or 0.4 again.  They are starting to talk about a plan for home, but we know how that goes, don't we?  No getting my hopes up until I'm pulling out of that parking garage!

 

4. COOKING Among a million other things that I miss about being home, I miss cooking!!  I can't remember the last time I actually cooked a meal in my own home.  Three months ago probably?  Anyway, I've occupied some of my time here at UIHC coming up with some meals that I want to cook when I get home, like these for example...

Salsa Verde Burgers,  Mini BBQ Cheddar Meatloaves, and Chicken Tortilla Soup!

So anyway, when they let us bust out of this joint, I am READY! And now I'm hungry... :)