Prayers for labs

I wanted to let you know that we need some prayers for Mr. Blake.  Last week, he was supposed to have his monthly lab draw.  For those of you unfamiliar, he still has his port up by his left collar bone that the nurse has to access each time.  Last Tuesday when we tried she got a pull back of blood and then it stopped.  She manipulated the needle, got a pull back of blood and then it stopped.
We tried another needle and we couldn't get any blood.  After that, we were out of needles and had to wait for another shipment from Iowa City.

This port has been with us since 2013, which is super awesome.  It also makes me scared that it has finally crapped out on us.

We have repeat labs to try again tomorrow (Tuesday) morning.  If you would, please pray and think positive thoughts that it works.  If it doesn't we'll be heading to the hospital locally to get some blood thinning stuff put through the port to check and see if it's clotted.  If that doesn't work, I'm assuming we'll be headed to Iowa City, which nobody wants to do.

Thank you all in advance and I will keep you posted!

The way I see it....

Blake's appointments

I haven’t talked a lot about Blake in my column lately and how he’s doing because there hasn’t been much to say.  A good problem for sure!

Last week Blake had labs on Wednesday here at home and the results  were mostly good except his kidney function numbers went up (that’s  bad) for the second month in a row.  When I say they went up, it  wasn’t by a lot.  That being said, my mind works into overdrive that  it’s trending in the wrong direction and that he’s going to have to have surgery and we’re going to have to start cathing him again, etc., etc, etc.  Yes, I know I have an overactive mind.  It’s not my  best quality.

Blake had his six month check-up in Iowa City last Friday.  On the docket for the day was an ECHO for his heart (done yearly and standard transplant procedure), an ultrasound on his kidney and bladder (done every sixth months and standard procedure) and consults with the urologist and nephrologist (kidney) doctors. Aaron teases me that I’m “Miss Expert” at the ultrasounds for his kidney and bladder.  I can’t help it.  He’s had so many and I can  generally tell when something is wrong.  He texted me afterwards and asked how I thought things looked.  I told him it didn’t look like a ton of fluid around his kidney (great news), but there was a weird  floaty thing in his bladder that I had never seen before.  I was kind of puzzled.  I think Aaron was doubting me.

After the ultrasound we met with urology in which Dr. Storm said, “kidney looks stable, but there was this strange thing in his bladder that we aren’t really sure what it is.”  While I’m not happy I was right, I kind of did feel like a semi-expert at that point.  Long story short - the doctor had a couple of theories, but no definitive answers as to what it was.  He said we could open him up, but nobody wanted to open that can of worms since it appears to not be doing any harm.  We’re just going to keep an eye on it.

Dr. Jetton, our kidney doctor, was really happy with how Blake is doing.  The two best parts of that appointment were that she said we would shoot for the summer to get his g-tube (feeding tube) out of his   stomach and she knocked two more meds off of his daily list.  At the worst of things we were at 20 plus, so to be down to five meds just twice a day is so, so great!

It’s funny how some things change and some things stay the same.  I was hit with that hospital smell as soon as I walked in, along with the hustle and bustle of people heading to and from appointments.  The tired, stressed out looks on family member’s faces was all too familiar. On the other hand, I have a five (almost six) year old, who hops up to get his blood pressure taken, who doesn’t need anesthesia for his ECHO, can hold still during his ultrasound and can answer on his own the questions he was asked by doctors and nurses. I was reminded how much I have to be grateful for with those good reports, especially with all the sickness I was confronted with.  I was also reminded to never take a single good day for granted, but 
that’s just the way I see it.

Tonsils and Adenoids Out

Blake is officially tonsil and adenoid free!  Yay for that!  We had pre-op appointments yesterday and he was kind of coughing and had a runny nose and I was worried they would cancel, but since his tonsils were so huge, they were pretty adamant that we had to go through with the surgery STAT.

Blake was second case this morning and went in about 9:45 AM.  I felt terrible because he's older now and so darn smart.  He listens to what doctors and nurses say and he knows that maroon scrubs and green scrubs means surgery.  When he heard or saw something scary he would start crying.  It's terrible and pulls at my heart. 

 Aaron dropped the other three kiddos off at school and then came down with us for the day.  I was so glad he was here.  We met with the surgeon and the first thing she said was, "The surgery went smoothly."  *BIG EXHALE*  She did say that the nurse anesthetist, who's been on the job for 35 years said Blake had the biggest tonsils he had ever seen.  That's right, in 35 years.  Blake is #1.  Because, it's Blake....

The surgeon was pretty shook up about how obstructed his airway was.  She was very thankful that they fit him on the schedule so soon.  She said that if it would have been two more days he probably would have needed something to help him breath because the airway was just THAT restricted.  Scary to think about, but man am I thankful that Dr. Zepeda was adamant about getting those tonsils out so soon!!

After a long three hours in recovery, we got to go down to the regular floor.  He was drinking water and sprite and him and Aaron played play station together.  Then, he just slept and slept and slept, which he needed because he was having a heck of a time breathing at night.  

I went down to get something to eat and the smell of coffee from the Java House hit my nose and I looked around at the bustle of people around me and I'm telling you, it's like we were right back to where we were a couple years ago.  Like we hadn't had a two year break from this place.  It was kind of a weird, out of body experience sort of thing.

The first round of testing came back today and everything was negative, which is good news!  The scary stuff will take another week, so we're praying those are also negative.  

I just wanted to take the time to thank each and every one of you who sent me texts, facebook messages, snapchat messages or called to wish us luck and see how things went today.  You guys are the best.  I know you're thinking I'm just saying that, but I'm absolutely not just saying that.  I mean it from the bottom of my heart.  We couldn't get through this stuff without all of you.  Thanks for riding the rollercoaster on this journey with us!

The plan as of 9:16 PM tonight is to go home on Saturday, so let's hope Blake cooperates and sticks with the plan! 

#keepfightingblake

#builtblaketough

First day of school 2016!

Tuesday was the first day of school.  Tuesday was the first day that I sent all four of my kiddos to "the big school" as the twins like to say.  People say time flies and they are right.  I can't believe it. 

I was very nervous about how Blake would do since he gets anxious in new environments and around new people.  I think the back-to-school night helped on Monday, plus we may have visited his room a couple weeks ago too.  Bowen was a rock star.  Blake was a rock star.  Not a single tear, I couldn't believe it!

Jenna, 5th grade

As I was walking out of the school I had people telling me they were thinking about me and that they knew I would probably cry when I got out to the van.  You know what?  I didn't.  The only time all day I almost choked up was when I saw one of my favorite photos of the twins in matching shirts when they were about 18 months old.  I took one look at their chubby little faces and almost lost it, but held it in.  

Brody, 3rd Grade

I think the main reason that I didn't shed a tear was because we've come so far with the twins.  I remember when we thought we'd never see this day and then, there we were on Tuesday, sending the boys to kindergarten.  I felt grateful and thankful and blessed!

Blake, Kindergarten

Another reason is because Blake got to be in school on the first day.  He had an appointment in Iowa City last Friday and we learned that his tonsils have to come out and soon.  They did a ton of labs and talked about the possibilities for the enlarged tonsils.  In a transplant kiddo, it's not as simple as - he needs his tonsils out.  There's something causing his englarged tonsils and lymph nodes and they need to take them out to get an answer.  To be honest, some of the possibilities are kind of scary. 

Bowen, Kindergarten

 I got the call today that his tonsils are coming out on Friday!!!  Yes, like the 26th.  We head down for pre-op appointments on Thursday.  I'm super bummed that Blake is already having to miss school and he is sad too.  If you all could, please say some prayers and positive thoughts for Friday's surgery and also good news as we await the pathology report.  My stomach has been a mess since last Friday and I just want to have an answer. 

The school year is underway.  I'm excited for all of the kiddos and their teachers, I think they got a good bunch.  Oh yeah, Mr. Burdorf is also starting his 15th year teaching, but he left early for school so I didn't get a photo of him!

I will blog on Friday with a report on Blake's surgery.  #keepfightingblake

Blake did it!

This is a HUGE Fri-yay for Blake that I have to share with you all.  Blake has been trying, off and on, to ride a bike without training wheels.  Thursday, Aaron sent me a snapchat at work and it was two different videos of him riding unassisted.  I tried not to get my hopes up, but when I went home for lunch he was so excited to tell me that he could ride without training wheels!

 Our neighbor, Jon, said to me, "Have you ever seen somebody decide to ride a bike so quickly and just do it?!"  I haven't. 

 I was feeling really crummy for Blake because, obviously, Jenna and Brody ride bikes and Bowen has been riding without training wheels since last summer.  Sometimes, things are just harder for Blake, things like fine motor skills and balancing on a bike.  That's why I am SO HAPPY for this kid. 

 If you can't tell by the photos, he's pretty happy about it himself.  Ha.

 Last nite, despite being 400 degrees, he wanted to go for a short bike ride, so we went about a mile and it was awesome!  He did great, was very cautious at all times. 

 Usually, the kids want to go for a bike ride and Blake and his itty bitty bike with training wheels just can't keep up.  Plus, he gets tired and I end up having to push him.  Not so anymore!!

 When I get to see Blakers do things like this and accomplish things like this, it pulls at my heart.  I mean, look at that smile!  I'm pretty sure this kid will be able to do anything he sets his mind to!

Fri-YAYS!

I thought I would post some good stuff that happened at our house this week.  I'm calling them Fri-YAYS!  It was a busy, crazy week, but there was good stuff too.  Here goes:

1. Aaron finished up his three week long/three days per week classes at UNI.  He had to be up in Cedar Falls by 7:15 AM and was there until 12:30 PM.  It was especially tough because he was juggling travel and homework and getting home from umpiring at 11 PM at night.  Lack of sleep, much?!  He is officially done with the trek.  Now, he just gets to take online classes and can stay put!  Yay for more time with dad! :)

2. I finished this book, "The Rumor."  It was a fast read and I highly recommend it.  Are you from a small town?  Do you know how quickly rumors can spread (albeit incorrectly a lot of the time)?  You will appreciate this book.

3.  Jenna won two county ball tournament games this week!  We play again July 5th.  I love getting to coach and get to know and teach these girls a sport I love.  Hopefully Miss Jenna can keep pitching the way that she has.  Her hard work is paying off. :)

4. Children of the 90s, you will thank me for this.  My favorite station to listen to on Pandora is Summer Hits of the 90s.  I love listening to songs that take me back to middle and high school.  Who doesn't need a little Matchbox 20 or Hootie and the Blowfish every now and again?!  You're welcome.

5. Yay for summer and all of its laid back glory.  I love it.  I love eating late and scrounging something together.  I love having living room or outside picnics.  The other nite we got home from Jenna's game, made frozen pizza and laughed a ton while watching, "The Middle."  BONUS:  Blake ate two whole pieces of pizza and didn't spit out a single bite!  PROGRESS. 

6. Speaking of Blake, he had labs today and all the labs we've gotten back so far were all within range.  Praise the Lord for that good news to kick-off our long weekend!  I love that kid and I love that rock star kidney of his.

We have a busy weekend planned and are looking forward to spending time with family and friends.  I hope you all have a great, long holiday weekend too!

Super great news!

Blake had an appointment on Monday in Iowa City and since Monday is my "paper day" Aaron took Blake down.

The first appointment was an ultrasound of Blake's kidney and bladder and a consult with urology.  Dr. Storm said everything looked stable from six months ago and to keep on keepin' on.  Aaron commented how great it was that he was able to pee on his own.  Dr. Storm apparently just shook his head and said, yet again, "But he's not supposed to be able to pee."

There are some things you just have to roll with.  Don't question it, just be glad.  Be thankful. 

Blake also had to have an iron infusion and meet with Dr. Jetton.  Dr. Jetton thought all looked well and she made just one med dosage adjustment.  She also said Blake didn't have to go back to see her (as long as all is well) for SIX MONTHS.  SIX MONTHS!!

When Aaron told me that I pretty much teared-up.  For a kid who could barely stay out of the hospital for 48 hours, SIX MONTHS just blows my mind. Happy heart for this mama!

Our turkey day craft

Maybe we should alternately title this, "Jamie's attempt at being a crafty mom!" 

Here's what happened:  We got about seven inches of snow on Friday afternoon/overnight into Saturday morning.  Jenna and Brody's basketball games got cancelled and Jenna  begged me to do a "project."  I thought we could make something for the Thanksgiving table at Grandpa and Grandma Burdorfs.  I quickly consulted pinterest trying to come up with an idea (what did we do before pinterest?!).

I liked these cute little turkey name place cards.  We improvised a bit on how to do them and what supplies we used, but I think they turned out pretty well.

First off, Jenna painted some wine corks brown.  "Conveniently" I had a bunch stashed in a drawer. ;)   

 

 Then,  Brody and I shaped the pipe cleaners, while Jenna cut out the beaks and whatever that red thing on a turkey is called.  I did the hot-gluing of the eyes, beak and feathers. 

Next, I found some wooden grilling skewers stashed away in my pantry, so I cut those in half and stuck it into the top and then just hot-glued the construction paper onto the top of the skewer.  Wa-la!

 It was a little time-consuming, but we think the finished product is pretty cute and will look great on the Thanksgiving table!

 

Here's what you need:

1. Wine Corks

2. Brown Paint

3. Googly eyes

4. Pipe Cleaners

5. Foam sheets (for beak)

6. Wooden Skewers

7. Construction paper

 

On a side note, I have to ask for some prayers and happy thoughts for Blake.  His tacro and creatinine were just slightly higher than normal, so we have to redo labs Monday morning.  Please pray for a smooth draw since last Wednesday was a nightmare and pray for those numbers to where they have been.  Thanks friends!

Blake's MRI

I had posted on Facebook a couple of week's ago that Blake had to have an MRI on his heart.  On one of his yearly ECHO's they saw some bright spots that they weren't sure about and wanted to "cover all their bases," by doing an MRI. 

On November 6th, Blake had his MRI.  He had to have anesthesia because there was no way he would sit still for that amount of time.  Getting him to sleep was harder than I thought it would be.  I told Aaron my "mom moxie" that I had built up from all those crappy months in the hospital had faded away.

They started by giving him something through his G-tube that would make him sleepy.  The next thing I knew they moved the chair over that we were sitting in and told me to put him in a bear hug and they held the mask on his face until he was completely out.  Despite the fact that he was sleepy, he fought them and I just hated it.  I left the room with tears in my eyes, because who wants to go through that as the mom for their child?  Poor Blake.

The test went fine and when I saw him in recovery he was not a happy camper.  They had put two iv's in his hand and he didn't like that so much.  Anyway, after about two hours in recovery we were able to head home.

After a very long wait, we got results via My Chart and read through them.  Nobody ever called us, but it looked like, reading between the lines with all the doctor speak, that his heart function is just fine and they will continue to monitor him on a yearly basis. 

That was great news!!  Blake acted fine, but there's always that part of you that is nervous because it's his heart.  Exhale of relief!

The way I see it...

Blake Scare

Blake had labs a couple of weeks ago.  Everything went as well as could be expected with the accessing of his port and drawing blood.  They took a lot of blood and I hate that, but there was a lot of labs that needed to be done.

About two hours after our nurse left, she texted me his creatinine (kidney function), which she always does.  She said it was 2.1.  Normally at Mary Greeley it is 0.6 (which is 0.4 at UIHC).  Let me tell you, that might not sound like a big difference, but I assure you that it is.  0.6 is beautiful and right where we want it.  That 2.1 number means Blake's kidney is functioning at about 40%.  That's terrible, obviously.

As is my personality, I went into total panic mode.  I texted Aaron.  I made a mental list of all the things I would need to pack for Blake and myself.  I was trying to figure out what I would take for food and drink.  I was mentally figuring out the week and how I would get Bowen to and from preschool.  I was thinking of what they'd do when we'd get to Iowa City - re-access his port, draw labs again, ultrasound on his kidney/bladder, probably a biopsy on his kidney and they might give him some steroids thinking his kidney was in rejection.

YES, yes I know that I may have a problem, but I've been down this road before and I feel like a seasoned veteran.  For the record, Aaron was all calm and reassuring and saying he didn't believe it because Blake was acting fine.  I kept thinking, how would we know?  You can have problems with your kidney and not have a clue about it!

Anyway, just to be sure, I called over to our intake nurse and left a message.  She called me back.  I explained the situation and asked her to double check his creatinine.  I could hear the rustle of papers because there were so many labs drawn she couldn't find the sheet with that number.  What felt like a couple of days later, she said, "I have no idea where I got that 2.1.  His creatinine is 0.6."

I admit to you that the amount of relief I felt consumed me and I did indeed cry some happy tears.  The nurse was apologetic and I assured her as long as she was wrong, I didn't even care.  I think that little episode took two years off of my life.  Whew!  I guess it goes to prove that sometimes, mistakes can turn out alright, but that's just the way I see it. 

(Mostly) Wordless Wednesday

I put the kiddos to bed and here I was, just sitting on the couch watching the Cubs game and painting my nails.  Then, I was like, oh crap!  I haven't blogged yet today. ;)

I took these pictures of Blake back in August maybe.  It's rare that it's just him outside by himself and I couldn't resist snapping some (ok a lot) of photos of our little baller.

 And then I look at that kid's face and I can't believe he's here.  I can't believe what we've been through.  Looking at this photo makes my heart clench a little.  So lucky.  So incredibly lucky. 

The latest on Blakers

Ok, I'm really late on posting about our latest doctor's appointments in Iowa City and if you're friends with me on facebook, you've probably already heard my summarized version of them.  However, I wanted to get down on the blog here our good news x2!  

Oh...and these photos?  They have nothing to do with our appointments, I just liked them a whole bunch and wanted to add them to this post. :)

 A couple of weeks ago Blake was "lucky" enough to have an appointment on Friday AND on a couple on Monday. 

 Aaron took him down on Friday for an orthopedics appointment.  It had been a year since our last appointment.  They were confident that Blake's bowlegs would straighten, but worse case scenario was surgery where they went in and put plates on the outside of Blake's knees.  Ummm...not excited about that. 

 After an x-ray of Blake's legs, the doctor came in and compared this year's to last year's.  Aaron said the difference was amazing!  The doctor said Blake was good to go and we DIDN'T NEED TO SEE ORTHOPEDICS ANYMORE!!  WOO-HOO!!

 Monday was urology and nephrology.  I'll be honest, I was kind of nervous about the urology portion of the appointment.  When we were inpatient in May, they said his hydronephrosis (fluid around kidney) had increased since the previous ultrasound. :( 

 During the U/S, I quickly glanced at the screen and thought the fluid looked better, but I couldn't be sure.  I've seen so many of those things I can kind of tell if things look super crappy. In meeting with Dr. Storm, he thankfully confirmed that Blake's hydronephrosis was improved!!!

 I was sooooo happy and relieved!  Since Blake is still peeing well like a regular boy, we can keep on keepin' on.  Yay!!!

 We saw Dr. Jetton next and as he was playing with the bed, moving it up and down, standing on top of it, grabbing the blood pressure cuff and messing with the water in the sink Dr. Jetton said, "I see he's lacking in energy!"  haha. 

 She didn't really have anything else to say other than she was glad that for another month Blake didn't give her heart palpitations. ;) 

 All in all, two days of appointments with lots of good news.  Thankful heart. 

 That's the latest.  We want to thank Mother Nature for the six inches of rain she sent our way so my kids could have so much backyard fun!

Blake and his clot

Yesterday we had a late appointment in Iowa City.  I hate late afternoon appointments because they are never on time, but at the same time, I don't want Blake to have to miss preschool, so for the time being, late afternoon it is!

I'm not sure if I've ever blogged about the blood clot they discovered in Blake's leg following him going septic?  If so, just skip this part.  Anyway, they discovered the clot one of the million times we were in last year and it was due to one of the lines they had in his leg.  I had to give him blood thinner shots every day for awhile and then after some bloodwork hematology said we could stop the shots and then just do vascular u/s checks every few months. 

  

Well, yesterday was a vascular ultrasound to check his right leg.  Normally Blake cries when we start and then settles down.  Yesterday, no big deal.  He held my hand and kept an eye on the guy doing the ultrasound.  He even told the guy a couple of times that the gel was too hot!  

Following that, we had time to burn between that 3:30 PM check and our 4:40 PM consult with the hematology doc.  So, we did what we always do - visit our friends in peds dialysis!  That bunch is truly the best.  We love them like family and always say hi every chance we get!

 Waiting for the doctor is crazy town with two ornery four year olds.  They: wrote on the chalkboard, gave each other rides up and down on the bed, looked at each other's tonsils, in each other's ears, pretended to scan each other at the computer, turned the sink on and off a million times...  Well, you get the point.  I was willing the doctor to hurry up. 

When she got there she had great news:  Blake's been off his blood thinner shots for a year and his clot hasn't changed and appears stable SO WE NO LONGER NEED TO COME BACK FOR ANY MORE FOLLOW-UP APPOINTMENTS!!!  Are you sensing my excitement?  The doctor said and I quote: Cross this doctor off the list.  Um, happily!  :)

 The new children's hospital is coming along nicely.  It's set to open in 2016 and we can't wait.  It was a source of distraction when we were inpatient and still is pretty neat for the boys to look at every appointment.

Here's the thing about having a chronically ill child I decided on the way home.  You learn quickly that you have to celebrate the big stuff, but also the small stuff.  You don't take things for granted. Ever.  Ever, ever!!  Blake's labs have been good for over a year, but I still get sick to my stomach when I call for results.  When I hear the news, I still to this day get so happy.  I don't think that will ever change.

So, today, we are celebrating getting to cross the hematology department off the list.  Yay for that!