Thursday, February 27, 2014

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... :)  

Tuesday, February 25, 2014

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!!!

Monday, February 17, 2014

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... ;)

Tuesday, February 4, 2014

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...

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