The S Word

Yesterday morning, LP's catheter came out. The tubing cracked, which allowed air out, which then deflated the little balloon in his bladder that holds it in place. When we spoke the the Nephrologist on call in the morning, she had agreed that perhaps we could just leave it out until his surgery; so that he could start school without a bag o'pee accompanying him.

After this conversation, we went out to lunch, ran some errands and came home to a message saying that the Head of Nephrology had overruled her and that we were to report to the ER at Childrens Hospital to have the catheter replaced. So, after letting Little Pom go to the pool for the first time all summer, off we went. The original plan was for him to be fully sedated, as usual. But because we had eaten lunch (BEFORE being told it would need to be replaced) that wasn't possible. LP was very, very scared and very, very brave...but he let them put the new cath in without fighting or struggling...and without any anesthetic other than some topical lidocaine!

Afterwards, he was still really angry and frustrated about having to endure this process without sedation. So, in an effort to distract him, I discovered a new parenting technique:

I told him that sometimes we feel really BIG feelings. And those feelings require really BIG words. So, if it would make him feel better, he could (behind closed doors and with only Daddy, DQ and myself present) pick exactly *one* "grown-up" word to say. O-M-G! The tears stopped immediately, his little face lit up and he said "I've always wanted to say this one: shit!"

And with one magical S Word, the tears were gone and the trauma giggled away. Not something I'd recommend in every day life, but when (not if) these scary, painful and control-taking-away things have to happen, it's nice to know that there's a "naughty" way I can cheer him up that DOESN'T involve a trip to Toys R Us.

Todays Stress Level is: Elevated (Orange)

I have been crazy-busy at work. I got a promotion (YAY ME!) that came with tasks that amount to:

1) Planning a fundraising event (that's roughly the size and scope of a wedding) in a little less than 3 months.

2) Writing, Producing, Directing and Filming a short promotional film that will make people cry 3x in 7 minutes to be screened at said event.

This is in addition to doing a TON of other job-related tasks, trying to finish up my 2nd book before the November deadline, and of course, parenting a medically fragile child. Oh...have I mentioned I know NOTHING about video production?

Adding to the excitement/tension level: we're getting the house in Eastpointe!!!! Of course, Daddy is going away for a month in October, which means that we can add:

3) Tearing off and replacing a roof
4) Repairing the foundation issues

Both in September...in the middle of the work tasks....and the medical appointments...and the writing....and of course, both kids dance and school schedules.

Yeah....no stress here at all.

But of course, no one comes here to read about *me* anymore, LOL. It's aaaaaaaaaaaallllllllllllllllll about Little Pom. So, here's the latest update:

LP was supposed to have his cardio evaluation on the same day as his dialysis clinic this month. He has to have a EKG and Echocardiogram (among other things) in order to be cleared for transplant. I got to the hospital at 12:30 for a 1:15 appointment. Checked in at Outpatient and found out that I needed a prescription for his labs. They sent me to Cardio for the 'scripts. Cardio said that they didn't have them. But they marked that we were there. So then, we went to Dialysis Clinic, got our 'scripts and went back to the lab. Waited there for-evah. When we were next in line, it was 1:20 and we ran across the hall back to Cardio. We sat *there* for awhile, until someone asked us for LP's authorization. No one told me I needed an authorization. So, around 2:00, I skipped the middle-man (aka our evil pediatrician) and called LP's case manager at the insurance company. She said "put them on the phone, I'll give them the authorization right now." They refused to talk to her and said that it had to be faxed in. So, she hung up with me, called them and gave them the authorization number. Their response: "thanks for that....now can you please fax it?" The level of beuracrasy was mind-boggling. I send the Dancing Queen BACK up to the Dialysis Clinic (they were waiting on us) to ask what the latest we could go there was and they said 3:30. FINALLY, at 3:00, we were called in for the Cardio workup. I told the nurse that we had to be at PD clinic by 3:30 (remember, this was a 1:15 appointment) at which point she said.....

"Oh that's not nearly enough time for everything we need to do! You'll have to reschedule and come back!"

I was seriously about to cry. I was soooooo close to tears that you could hear it in my voice. So, we left Cardio and went to clinic. Here's the update on that:

- His catheter site is healthy & healing.
- His diet still is severely restricted and we're not very good at that part of everything.
- His numbers were okay...not super-high, but not normal either.
- His painful shot has been decreased from once a week to once every 10 days.
- But we've added 6 new pills per week.

And that's all the news that's fit to print.

PS- Cardio called today and rescheduled his appointment for the day after tomorrow. Oh, and even though the Case Manager issued a Universal Authorization for him, they didn't bother to enter it into the system, so now we have to get ANOTHER one....in the next 48 hours. Bastards.

Little Pom's Parents and the Terrible, Horrible, No-Good, Very Bad Day

This is going to be short, because I'm exhausted.

Today was LP's MRI, which required sedation. Not a problem, he took the IV without a fuss, was cheerful and chipper going down and didn't fight the sedation too hard before it knocked him out. Easy-peasy, right? Yeah...not so much.

When they went to wake him up (after getting him set up for the Urodynamic Study, inserting a special catheter and a corresponding anal-proble), it was discovered that Little Pom is one of the lucky 3% of the population that reacts- let's go with poorly- to the anesthesia. Yeah. It was bad.

Imagine your stereotypical crazy person in a Hollywood rubber room. The screaming, the thrashing, the incoherent begging & yelling, the fighting people off, the flailing, the potential for self-injury. Now, imagine that's your eight year old. And there's nothing you can do.

This went on for HOURS. The Urodynamic study was a no-go of course, and they gave him more (different!) anesthesia to replace his foley catheter. Took him about 45 minutes to wake up...fuzzy, disoriented, scared and angry. He seemed mostly okay, so we took him home. But it was a nightmare. We went right back into psychotic-break mode on the way home. Halfway there he was screaming at me for refusing to take him to Chuck E. Cheese...the rest of the way home he was screaming at me for not getting him home faster. It was awful.

When we got home, he was inconsolable. Being pragmatic as well as petrified, I had Daddy video tape about 5-8 minutes worth of his thrashing and begging for help...including me asking him how many figures I was holding up and having him consistantly double them.

He finally fell asleep and he's been out ever since. I'm hoping he'll stay down through the night. Poor baby. Poor parents.

Getcha Getcha Getcha Getcha Head in the Game!

So, last night was the Lions game! It was great fun- LP got his coveted foam finger and used it well throughout the game:





The Lions took an early lead, and Little Pom was right there cheering for them the whole time. He was even on the Jumbotron for a few seconds:



However, when the Giants managed to tie up the game in the 4th Quarter, LP was a bit more tense:



How good were the seats? Well, let's put it this way...all of the next photo's were taken with Daddy's cell phone, so the zoom capability was pretty darn limited:







Yeah....we were THATCLOSE. :-)

In our "Small World" column- it turns out that the family sitting directly in front of us had a child who also see's LP's nephrologist. Here's a psuedo-transcript of their actual conversation:

LP: (to the mom) I have low kidney function.

Other Kid: I pee blood!

LP: Well, I get a machine!

Other Kid: Yeah, that's way cooler.



All in all, it was a pretty awesome evening. Thanks again, Franny!

O.M.G.

Thanks to a very, very, very kind family of people we've never met before, Little Pom is having a one of his dreams come true: we're going to the LIONS GAME tomorrow!!!! I got an email this morning from a former co-worker, passing along an email from a friend of hers who had Lions tix for sale. I sent them an email, asking how much they wanted for them and instead, she said that her husband and son wanted to give them to LP instead. I was absolutely speechless...in fact, I think my reaction startled my office-mate a bit, LOL.

Did I mention that they're playing the reigning Super Bowl Champion New York Jets?

Oh yeah...and that our tickets are on the THIRD ROW of the FIFTY YARD LINE!?!?!

O.M.G!

I will definately post pics- I can't wait to see how big LP's smile gets before his face cracks, LOL.

On a side note:

I was wrong...Ms. M did *not* send us the Dairy Delicious. So, to our anonymous benefactor, Little Pom says (a very milky-mouthed) thanks!

My extraordinary editor Elysia (check out that alliteration!) send me the sweetest card today. Her note made me cry. She also sent LP a copy of the book "Piratology" which has become the newest treasure in his pirate library. Thanks to her, LP is getting a PD belt! What's a PD belt, you ask? Well, ever since Little Pom got home, we've had to tape his dialysis catheter to his belly...not comfortable, and not very effective. The alternative is letting the tube dangle from his belly all day. Instead, I can order him this tomorrow:

https://id309.securedata.net/fstubbs.com/merchantmanager/product_info.php?cPath=32&products_id=86&gclid=CJepooPI-pQCFR8SQQodXy4GrQ

It's been a good day....but I think Little Pom is getting a tiny bit spoiled, LOL!

Dairy Delicious

To the wonderful, fabulous person (the wonderful Ms. M) who sent us FOUR CASES of Dairy Delicious products:



Rory had mac & cheese for dinner with milk to drink, thanks to you.

Update

We actually had a pretty good weekend. Little Pom's Nephrology team gave him permission to go to my in law's Knights of Columbus overnight campout on Saturday and he had a BLAST. They pitched a tent and roasted marshmallows and generally had a good ole time. I'm pretty sure it made his summer. Daddy took pictures, which I'll post here as soon as I can. You won't believe how happy he looks.

Speaking of happy: I GOT A PROMOTION! I'm now the Service Relations Coordinator for my Habitat for Humanity affiliate. Pretty nifty, huh?

And finally, for those who are interested in considering living kidney donation, please check out www.kidneykid.com and the living donor page. I have uploaded .pdf files of the relevant forms and you can now print them off directly from the site in order to submit them to the hospital transplant team.

More later on!