December 13, 2013

Puppet show & ice cream social

9 hours

9 hours later and we are DONE!

The difference a few minutes makes

Urology

Kidneys are perfect.

I repeat. Kidneys are perfect.

Bladder not so much. Ultrasound showed some thickening of the bladder wall. Urodynamics was...funky. Low functional capacity, problems emptying, incomplete voiding. We are being sent home with a "new regimen" and come back in 6-months for a repeat of the testing. Nothing earth-shattering, but there will be some changes in his life. Dr. Reddy knelt down beside him and said, "Ben, the best thing you can do is listen to your mom because she is going to ask you to do things I've explained to her so we can keep your kidneys healthy."

Urology barfing vs. buttkissing

Well, our new uro (did I mention our former urologist has left us for NY?) is well on his way to both seeing me vomit and winning our hearts. This is our first time seeing him. He just popped in to the room and said, "Hi, I'm Dr. Reddy. I'm afraid I have some bad news."


(Don't barf in front of the specialists, Becca. Don't. Keep it in. You can cry in the shower later tonight. DO NOT BARF.)


"I wanted to tell you myself rather than have the nurses give you the news. I am so sorry, but I have an emergency I have to attend to so it will be a long wait before your appointment." 


Wait...what? What? The wait is the bad news? The wait?


"So...the wait is the bad news?"


"Yes. I am so sorry."


"GREAT! See you later!"


Gotta love that he didn't get the nurses to do his dirty work, but Christ on a bike, man! Time to redefine "bad news" please.

The Summary

New specialist; new doctor to give our near-perfect medical summary to. My current employer offers "Personal Medical Guidance" through the EAP and boy have we used it. Hooked us up with a "medical advocate" who happens to be a cardiologist at Cleveland Clinic. I sent him our rather awesome medical summary and he helped craft it into the near-perfect version it is today.

"Wow, this is fantastic. I wish everyone did this."

"I know."

Back

Saw the orthopedic surgeon who said his lower spine has changed for the worse just a little but everything else is exactly the same as last year. So that's good! We come back in 6-months.

I kind of laughed at the radiology report - "LATERAL SPINAL CURVATURE: 11 degrees of dextrocurvature are measured in the thoracic spine with a rotation element. 34
degrees of levocurvature are measured in the lumbar region. Numerous segmentation anomalies make exact vertebral numbering problematic."

You gotta love it when a radiologist gives up. ;)

Ben is so pleased with his Needle Ninjas and all the fun to be had at the Ronald McDonald House he is absolutely killing me...

"Thank you so much for bringing me here!"

"You're the best mama in the whole world."

"I LOVE my new Ninjas."

"I love you even more than the Ronald McDonald House!"

"Do I have any appointments tomorrow? Darn! So we have to leave tomorrow??"

"This is the best place ever! Thanks for bringing me here."

Needle Ninjas

He got his reward for (as he puts it) "freakin out on the inside instead of the outside."

Eek.

RMH BOOM!

At 9pm last night we got THE call.

"It's Chris from the Ronald McDonald House Cincinnati. We have a room for you."

Ben was majorly bummed the rooms were booked when we called earlier. He literally jumped up and down with the news. He has a whole agenda here - playroom, video games, movie rental, video games, ice cream social, video games.

And no shots.

He has the "magic cream" on and his toy picked out from the gift shop, so we are as prepared as we can be. Every few minutes he randomly throws himself on the floor and whines, "I don't want a needle!"

First thing on the agenda today? Needles.

December 12, 2013

Zen

Done for the day and now it's time for some Chinese food. :)

Presto-chango!

Hard to detect with the naked eye, Ben has had a complete outfit change. Let's just say after drinking 16oz in a half hour urodynamics didn't have such a dynamic start. Watch your step in the urology waiting area.

The test went okay. Didn't empty completely which isn't good, but we will know more tomorrow once we meet with the urologist. New urologist. The nurse doing the testing said they are all "in mourning" about Dr. Alam leaving. Called him "brilliant"...you're doing something right when your nurses like AND respect you.

Waiting

Bottoms up!

The first 16oz of clears are officially done!

Ho ho hospital

It's everyone's favorite time of year ... the annual specialistpalooza!

3 X-rays
2 ultrasounds
Urodynamics
Urinalysis
Bloodwork
Urologist
Orthopedic surgeon
Nephrologist
General surgeon
Neurologist
Neurosurgeon

AND A PARTRIDGE IN A PEAR TREE!

December 07, 2013

November 07, 2013

Medical Bag of emotions

It's been a while since we've done a medical update here. Well, a few months anyway. That's good! But, it's that time of year (again) for the routine clinical follow-ups - urology, general surgery, orthopedics, neurosurgery, and neurology. I don't know what it is this time, but I have had a really hard time making the appointments. No, not because of the inherent logistical issues.

I hang up.

Seriously. I called scheduling about 10 times and it rang and I hung up the phone. As I'm dialing the numbers I'm envisioning the pre-game show where I tell Ben where we are going and why, what's going to happen and why, and answer the usual questions most parents get from their 6-year-olds like...

"Will there be any needles?!"
(yes)

"Do you have any magic cream?"
(yes)

"Does Olivia have to go, too?"
(no)

"Why do I have to go and not Olivia?"
(Because your body is different than hers.)

"Can we stop at Olive Garden?"
(yes)

"Am I going to have to take off my pants?"
(yes)

"Is the doctor going to look at my p*n*s?"
(yes)

"Am I getting a jelly belly"
(yes)

"Can we watch Ninjago?"
(yes)

"Can I get a toy from the gift shop?"
(yes)

"Can we stay in that hotel with the games and big breakfast and ice cream social and all the kids?"
(yes)

God bless the Ronald McDonald House. I swear he has no idea it's associated with the hospital. He asks about it at the most random times.

I digress. I just really, really, really didn't want to make these appointments. We've been skating by for a nice long while now. Nothing major. Nothing special. It's nice. Really nice.

But now it's time for the preparing, getting out the medical play equipment (the catheters, IV board, electrodes, face masks, etc), the bargaining, the begging, the negotiating, the stressing, the second-guessing, the fantasizing about just skipping this one.

And then it will be time for the driving 3.5-hours, the re-negotiating, the maneuvering through the most terrible neighborhoods of Cincinnati to get to the hospital, the buying of crack cocaine (just kidding), the parking (which is free, by the way...that is for you, you jerks at Northwestern and UofC), the last-minute fight-of-flight response which usually means I have to block a door to stop my son from running into traffic (or drug dealers...or, like that one time when the drug dealers at the bus stop prevented him from running into traffic), the holding him down while he begs and screams, the test results, the good-news-bad-news discussions...

And leaving feeling lucky that we get to take him home. I swear we are still traumatized by those long-ago days of the NICU.

Well, after all those hang-ups, I finally placed the call and got the scheduling ball rolling. And guess what?

Urologist is gone. Yeah, Dr. Alam has left. So then I'm asked which of the other 4 urologists do we want. Asked some "experience" questions and narrowed it down to 2. Picked the one of the two whose name sounds familiar which I'm assuming is because I've seen it posted on facebook in one of the medical support groups.

So, a big round of applause to welcome a new urologist on board - Dr. Reddy. I'm sure he's weird. No offense. As my sage Aunt B once told me - "All urologists are weird." Yes, even weirder than neurosurgeons.

And, in other big (HUGE) news...

DR. PENA IS NOT DOING SURGERY. Yep. He will still see his patients in clinic but he is no longer performing surgeries. (It's weird, right, that I can't type that or think about it without crying?)

Since I'm on the abandonment wagon anyway I might as well mention that Dr. Solomon, the principal investigator for VACTERL research, has left the NIH. He says he's going to some place private and it will actually be "better" for his research...but I'm skeptical. Although he did express interest in incorporating community-based participatory research into his future work.

Mark my words: if one more researcher takes my kid's blood (my blood, my husband's, our other kids') and then bails on the research before publishing jack-diddly I WILL NEVER PARTICIPATE IN RESEARCH AGAIN.

Haven't heard back from neurosurgery yet.

Neurologist emailed back and said "just text me when you're free and we will meet" <<>> Isn't that just great? He wants our blood (for research), too, and I might just give in because he's just that great. 

I'm trying to get ortho scheduled at a satellite campus because the clinic at the main hospital is so outrageously horrific. If you don't believe me, ask Uncle Andrew. He was there. There aren't enough chairs for everyone. At an ortho clinic. Seriously. So, basically anyone who is ambulatory has to stand. Ridiculous.

I do kinda love his ortho, though. Even our urology nurse said "he has a great reputation!" Which is about the highest compliment possible coming from the nurse I have nicknamed Debbie Downer. No, it's a reasonable nickname I swear. She's the one who calls with lab results and says things like "Well, you know that's considered kidney failure." And I say, "That's something that's reversible, right?!" And she says, "Well...maybe." So, our ortho rocks.

So, I bit the bullet and made the appointments (except ortho...still waiting to hear back) and it looks like the big, bad date is December 13th. That would be...drum roll please...

FRIDAY THE 13TH

Of course.

July 29, 2013

Eating apples is so exhausting

Silver spoon

Grandad has bought each grand kid a set of monogrammed silverware. So, yes they can say they were born with a silver spoon in their mouths. ;)

Seaweed Supply & Demand

video

Take your kid to work day

Eating Venus

Ben: "I am so hungry I could eat everything including all the food on Oyf (Earth), even a dinosaur, even outer space including all the planets except not Venus."

"Why not Venus?"

"Because it has lava."

May 19, 2013

Rabies vax - day 3

The girls and I are at the ER this morning for Day 3 rabies vaccines. Yes, in case we didn't explain earlier the vaccine requires a series of FOUR shots. The first round being the worst (6 for Mike, 4 for Becca, 4 for Ben, 3 for Olivia and 3 for Ari). Brought Ben in to the ER yesterday for his Day 3 shot and today it's time for the girls and I. Then Mike goes back on Tuesday for Day 7, Ben on Wednesday, and the girls and I on Thursday...and then Tuesday, Wednesday, and Thursday the following week.

Best. Month. Ever.

May 16, 2013

The aftermath

Each girl got three shots. The mama got 4. The girls got Popsicles. Mama got nothin'.

Life is unfair. ;)

Girl time in the ER

Next up this morning the girls and mama are getting the rabies vaccine in the ER. So far so good.

Then Mike comes back Friday. Ben Saturday. The girls and mama Sunday.

Best. Week. Ever.

May 15, 2013

Batty

Will have to update with all the juicy details later, but for now...

Bat infestation in the home. Everyone is getting rabies vaccine. The only place you can get it here is the ER.

Fun.

April 24, 2013

Wedding Wackiness

We got invited to Mike's cousin Lauren's wedding (brave of her, wasn't it?) and had a blassssssst. The kids are always fun and cute, of course, but they really got a reputation on the dance floor. Mike and I agreed it was ALMOST as enjoyable as our own wedding. 





© 2013 Liz Lynch