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

A Blakers update

For those of you who are friends with me on facebook, you know that our hospital-free streak was broken last Thursday.  While visiting Grandpa and Grandma Burdorf in Sioux City, we were forced to cut our stay about a half day short.

We noticed Blake's appendico site (the spot where we cath him to pee) was getting larger and more red/pink in color.  On Thursday around 1 PM, neither Aaron or myself could get a catheter in.  UGH.  Not a good sign.  I called urology and they wanted me to send a pic to Dr. Kieran, the urologist who we love who has been with us since the NICU.

She responded that she was sorry, but we needed to be seen.  Sooooo....it was a majorly long road trip for Aaron and Blake.  Sioux City to State Center.  Unpack.  Repack.  Head to Iowa City.  Without going in to too many details, we thought they were coming home on Friday, but they ended up staying until Saturday around 11 AM.  Blake's potassium was a smidge high and had the kidney docs worried.  Best part though:  Blake is doing so well!  Happy and active and going stir crazy in the hospital and you can't ask for much more than that!

They had us repeat labs on Monday just to be sure his numbers weren't trending in a bad direction.  They weren't, thankfully.  They asked us to try to cath Blake on Sunday and we couldn't get a catheter in.  Blake's site was enflamed and had created a "false pathway."  That simply means that the catheter isn't going the way it's supposed to.  Thanks to some steroid cream, his appendico looks like normal, but as of Tuesday, the catheter is still going down the wrong track.

So....we are having labs again tomorrow (Thursday).  This will be lab draw number six in the last eight days.  If there is anything "concerning" we will go to Iowa City on Friday to see Dr Kieran.  If not, we will see her, along with Dr. Jetton on Thursday, August 21st.  I haven't had to deal with all this uncertainty for a few months and let me tell you, I hate it.  HATE IT. 

I'm kind of frustrated with the whole thing.  I didn't think this was going to be a huge deal, but now with a procedure looming to get Blake's appendico fixed, I'm kind of freaking out.  I don't want him to start preschool by having to miss school.  I want a normal start for Blake.  Aaron will say I'm getting ahead of myself and to calm down. :) 

First things first, we need some good stable or improved labs tomorrow!  That's what I'm praying for and I know we just need to take one day at a time.  Happy thoughts!

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... :)

Entertaining ourselves...

So, we've been spending a lot of time at the hospital these days with all of the kiddos.  Aaron and Jenna, Brody and Bowen were maybe going to go home on Friday, but Aaron asked the kids and they said they wanted to stay.  We are trying to entertain them as much as we can. 

 We like to go for walks.  It's nice that Blake isn't connected to an IV for a portion of the day, so it's easier to get out and about.  We like to go to the 8th floor and look at the helicopter.  It does have a Hawkeye on it, did you know that?!  The kids noticed right away.

 On the peds floor where we stay they have a lot of toys and stuff and Bowen found this three wheeler that he likes to ride in the halls.  Well, I had a good/bad idea that it might be fun to take it down this big ramp of a hallway.

 Yep, it was fun alright.  Kind of gave me a heart attack a few times.  But, I got a workout to, running alongside. ;)

 Jenna's legs might be just a bit long, but she didn't seem to care.

 And of course, Blake needed a turn too.  Blake-style though.  We got some good smiles.

Super fun.  And, one of those things that you can probably only do on the weekends because there aren't many people around.  If we did it during the week, they might kick us out.  Which, come to think of it, might not be such a bad thing...

We walk.  And walk some more.  And burn off some kiddo energy.  I would say, all things considered and under the circumstances, the kids do really, really well.