Monday, March 31, 2014

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.

Thursday, March 13, 2014

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! ;)