update to anesthesia issue

Today I got a call from the patient advocate at Cincinnati Children's who worked Thomas's case. I originally heard from him right after I sent the original e-mail (you can read it here -- http://hoosierinthehive.blogspot.com/2009/11/long-time-no-blog.html) just saying that I had given them all the information they needed and he would get a response back to me as soon as possible. It took longer than I expected, but the results were better than I expected.

I was told that the details of Thomas's experience went all the way up to the Director of Anesthesiology as well as the Director of Residency. The individual resident and anesthesiologist were spoken to about the incident and Thomas's case will be used as an example in their teaching of what *not* to do.

That's all we ever hoped for -- to avoid something similar happening to another kid.

Halloween Photos, or, My Kid is a Real Butt

visiting the great-grandparents in the nursing home

Every party has a pooper . . .


. . . and Tommy G is it.

I can't wait 'til he's 15 and *really* has an attitude. :o/

Whyyyyyyy do I have to do this?

photo taken by surprise - Look! He IS having a good time!

Long time no blog.

I'm feeling a bit blah about blogging. More people are communicating via Facebook than reading my blog. Which is good. I started this thing hoping that my friends in GA would be able to keep up with us. FB sure makes that easy. It's one-stop shopping, the Wal-Mart Super Center of communication. The dismantling of my blog is under consideration. I'm going to give it some time and thought and see what I want to do. In the meantime . . . a long overdue blog post . . .

We've taken a few trips since I last posted. PNW was gorgeous. I can definitely understand the "pull" people feel toward the area. Mike would never survive the cold, the rain and the liberals, though. :) I would love the cold and the rain. And I'm much more tolerant of liberalism than my husband. :)

Our last trip was to the Midwest again. Visiting family and going to Cincinnati Children's for Thomas's medical stuff. Thomas got to spend Halloween with his cousins and trick-or-treated in the neighborhood I grew up in. Talk about a trip down memory lane. I even ran into a childhood pal roving through the old 'hood. Good times.

Remember Thomas's 'flowchart' for his Halloween costume last year? I couldn't talk him into being anything really new this year. I swear the kid is 8 going on 38. The *only* thing he mentioned other than re-vamping last year's costume was wearing all black and being a spy. So I jumped online and started the search for a trenchcoat and maybe a fedora. He saw me and said "Nooooooooo. I just want to wear REGULAR black clothes and be a spy." I nixed the idea for safety reasons. I knew he'd have a hissy about using reflective tape or something so he'd be able to be seen. So, no spy. In the end, we used last year's jetpack (glad I saved that!), and changed the front. Last year he fell down and could not get up because his 'armor' would not let him bend at the waist. So we found a catcher's chest guard and spray painted it silver. Added some starburst glitter Christmas ornaments to be "gravity grenades", some duct tape and the letters S.P. and voila -- Space Police costume.

The trip to Cincinnati Children's was more eventful than usual. Long story. We've been taking Thomas there for over 4 years now and feel like old pros when it comes to routine endoscopies there. We don't really feel anxious about it now. Thomas doesn't get nervous or upset. We've really become comfortable with the whole thing and have come to trust the staff there. So I have to say, we were utterly shocked when something did not go well. It is minor in the grand scheme of things and no lasting harm was done. Here's the e-mail I felt compelled to send to the hospital's Patient Advocates after the incident. I did take the Dr's names out. I don't want my blog coming up if someone googles them.

Yesterday (Tuesday, October 27, 2009) my son, Thomas, was seen by Dr. "X" for an upper endoscopy in Same Day Surgery and Dr. "Y" was the anesthesiologist. After going over Thomas's history with us, an anesthesia assistant or student (I’m not sure which) named Sean (?) asked Thomas if he would rather be induced by mask or IV and Thomas chose IV.

As I discussed with Dr. "Y" in the PACU, if I had been in earshot of the conversation, that would not have happened. From prior experience I know that Thomas's veins are difficult, and prone to "blowing out." I had stepped away from the bedside momentarily (to the section of the room right outside of where the endoscopy takes place, but still inside the doors of the endoscopy room) to get a consent form for research that had accidentally been left in the pre-op room. Though my husband was standing nearby, he could not hear this conversation and did not realize Thomas was being asked this question, or that any decision had been made to do things differently than usual. (Thomas has undergone numerous upper endoscopies at Cincinnati Children's, all with a relatively smooth induction of anesthesia and without incident.) Neither his nor my opinion/input/permission was sought. By the time I returned to the bedside, the IV was being started. It did not go well. Thomas got upset and felt pain when the IV was inserted. It was difficult to get it inserted, but Thomas was "talked through it", being told that it would only hurt for a minute and that it was like "just a bee sting." I regret that I did not stop the induction via IV at this point, but felt torn, thinking that it would be over soon and that Thomas would be "out" in just a moment. The vein blew. Dr. "Y" told the student that the vein had blown, but the student insisted, "No, he's getting it." The propofol was causing him pain and a new IV had to be started after anesthesia was partially induced. At some point, I said "I'm going to step in here and say let's use the mask." The student put a mask on Thomas and said "It's only oxygen." Though Thomas was "out", I could clearly see that he was in physical pain and clearly not completely anesthetized. He moaned, grimaced, pulled his arm away, his entire body stiffened and he lifted his body off of the table as the second IV was started.

I understand that "things happen" and I appreciate Dr. "Y" taking the time to come speak with us in the PACU. Upon further reflection on yesterday's events, I find myself still angry about Thomas being caused needless pain. I am also frustrated that I did not get a chance to speak with the student who made the decision to induce via IV.

I simply cannot believe that it is Cincinnati Childrens' procedure to ask an 8 year-old, without any parental involvement, to make the decision as to how anesthesia will be induced. Thomas has, thankfully, forgotten the experiences he has had with IV placement prior to yesterday and had no idea what that decision would involve. I know that he does not like the mask and would likely have chosen any alternative offered to that. On previous occasions, I have helped hold him still so that the mask could be held in place. Many times, with great success, the mask has been forgone in favor of holding the anesthesia tube close to his face. What I am getting at is this: though I know that he may not "like" the mask, I know that it causes him no physical pain. Based upon prior experience, I would not have opted for an IV induction. I would have guided Thomas toward choosing to be induced via gas. I feel as though my opportunity to advocate for my child was taken away in yesterday's situation.

What I would like to see happen is that today's incident be used as a teaching point to the student (Sean??) in regards to what age it is /is not appropriate for a child to make healthcare decisions without parental input and about making sure parents are at least aware of healthcare decisions their child is being asked to make.

So, what say you, people of the internet? Am I asking too much to think that my 8 year-old should not get to make that kind of a decision without my input?? I was just stunned. And downright pissed!

OTHERWISE, everything went really smoothly as far as the endoscopy goes. Though Thomas did fail his wheat trial rather spectacularly. Dr. X's first words to us in the conference room were "NO MORE WHEAT!" Well, that's pretty emphatic. His esophagus was in bad shape with exudates & furrowing showing up again. It was so bad that Dr. X said "I'm not even going to call you with the biopsy results. Unless, of course, they are not what I expect. If you don't hear from me by the end of Thursday, just go ahead with our plan." Honestly, it is easier if he fails, that it is a clear failure. No having to continue trials to see what happens. No notion that his next few trials may be colored by continuing a food that is "iffy". So now we wait 6 weeks for his esophagus to have time to heal and then we move on to new food trials. That means that our next trip to Cincinnati will be a ways out. Maybe that will prove to be some incentive for my parents to come visit.

Dr. X did lay out a plan for the next several food trials. If Thomas passes foods on the next 3 or 4 endoscopies, he should have a pretty healthy dietary variety. And then we'll start moving toward getting rid of his feeding tube. Which is a good thing. But it is also slightly unnerving. Thomas started out life below 3rd percentile in size (preemie). He moved up to around 25th %ile in his first year. Then in his 2nd year, he dropped back to 3rd %ile because he was so sick with (what turned out to be) eosinophilic esophagitis. Since he got his feeding tube and we've been able to get him nutrition even when he can't or won't eat well, he's moved up to 50th %ile. Possibly that's still below where his genes would take him without a medical condition, since Mike is 6'5" and no small fry and I'm *not* a petite flower myself. But, plain old average is GOOD. He's healthy because he is getting proper and adequate nutrition. I'm just concerned about what his growth might do when we drop the tube. I'm sure it will be a gradual thing. I'm sure we'll keep it in for a time even if we don't use it just to keep an eye on his growth. But it is still something that gives me a case of the "what ifs".

In other news . . . my best friend has set a wedding date!! WooHoo! I am so excited for her and her future hubs. Congratulations, Carrie!

Crazeeeee Coupon Lady

Last week I crossed the line. I went from a weirdo, binder-weilding coupon lady to a Crazeeeee Coupon Lady. I bought coupons from ebay. Yes. Really. I did.

Due to a great promotion Albertson's had been running, we are majorly stocked up. I will be able to go months without buying many things like shampoo, q-tips, spaghetti sauce, cereal, granola bars, laundry detergent, etc. Therefore, there was only going to be one coupon we would really want/use in Sunday's paper. Instead of buying the paper, I headed to eBay and got 20 of them for less than the price of 2 papers. While there I found some tearpad coupons that will work well with the Albertson's/Kraft promo that starts tomorrow, so I got those, too. Score!

back to the grind, well for a minute anyway

Today Thomas and I started back on our homeschool stuff. I had intended to keep up with a few subjects over the summer. But the best laid plans of mice and men and all that jazz . . . We've had a KickAwesome (stealing that from Chelsea) summer and math was not getting in the way!

visiting our family

and friends in Indiana

camping

hanging with friends

having family visit here

It's enough to wear a person out.

Public school starts here this week, so I figured we should at least try to get rolling. We need to get a bit of book learnin' in before we head off on another trip. This time the PNW beckons! I've never been . . . only drooled over t a c k y b u z z e r ' s photos. On tap for this trip: Cascades NP, Olympic NP & Mt. Ranier NP. That'll be educational, though, right?

Thomas did have an unusual amount of focus today. I hope that bodes well for our homeschooling journey this year. We finished early enough to have some free time, run our errands and still get home before public school let out. SaWeet! To celebrate, I'm making the Thomas-friendly version of chicken & dumplings tonight.

Pinching my Pennies

I've been working some really good deals at Albertson's lately and have been doing more and more printable coupons online. Learned a lot from my pals Joey & Lisa and the site pinching your pennies on how to score the best deals. This meant I was outgrowing my good ol' cancelled check file for coupons. So I decided to make a coupon binder. After looking at a few tutorials I went with a 5 star zippered binder with a zippered pencil case (to hold a calculator, pens, scissors) and a few extra pockets in various places to hold unclipped, unfiled coupons, ads, etc. Then I added 8 tabbed dividers that each have a slash pocket in the front. So each divider can do double duty to hold store coupons, etc. My sections are:

• frozen (Albertson's in the slash pocket)
• snack foods (Target in the slash pocket)
• beverages/condiments/pb&j (misc. in the slash pocket)
• boxed/canned (more misc. in the slash pocket)
• baking/cereal/granola (nothing yet for this pocket)
• meat/dairy/produce/bread (misc. store coupons in the pocket)
• paper/cleansers (rebates in the pocket)
• perconal care (restaurant coupons in this pocket)

Within each section I added pages that each hold 3 4x6 photos to hold the coupons. I took some blue painter's tape and a sharpie to label the pockets. So for instance in the personal care section there are pockets for the following:

• razors/shave gel
• deodorant
• oral care
• soap
• shampoo/conditioner
• styling products
• feminine hygiene
• cosmetics
• skin care
• lotion
• OTC meds
• first aid supplies
• sunscreen

You get the idea. I also started using the old canceled check file to save my receipts. Sometimes a good rebate will come along that I already qualify for if I could just find the receipt. This should solve that problem. I've been saving tons and getting sweet deals. I need to lay of the cereal deals for awhile, though. I think I have probably 10 boxes stockpiled. And I am the only one in the house who really eats cereal!

I remember some friends' moms growing up who did the couponing and rebating thing seriously. My mom never did. So at least I'm not turning into my mother yet, right?

NasCubs

Wednesday night we had a cardboard car race at our Pack meeting. Totally cute and the kids had a great time. It was one of the best Pack meetings Mike has run. Yay, Mike!

The kids made cardboard cars at home and raced 4 laps with 3 pit stops:

• tire change (take off shoes, turn socks inside out and replace shoes)


• refuel (drink a box of apple juice)


• clean windshield (spray water on face and wipe off)

Mike didn't worry at first about who he had race with who - so he lined up a Tiger and 2 Webelos to race in the first heat until we called foul and told him he needed to even things up. So he did, a little, but it still wasn't probably the most fair grouping ever. Turns out, we were wrong. The little Tiger had a rockin' pit crew and beat the pants off of the other kids, lol! He was totally cute and everyone was rooting for him!

Here's my kid, who threw himself down on the ground at the finish line. I think that's what we refer to in the parenting biz as a baby whiney pants sore loser.

Cedar weekend

On Thomas's birthday, last Friday, Mike took the day off and we all spent it together with some of our homeschool friends on a field trip. We started the day by meeting up at the Renaissance Fair, where I (of course) ended up in trouble. (Thanks for taking photos, Joey -- my camera was buried in camping equipment).




Thomas attempted climbing the rock wall, we did some great people (and cat??) watching, and got to see the people who practice at a local park every week do some demos of medieval fighting. An interesting morning, for sure.

After the Ren Fair we headed up the mountain a bit for a picnic lunch with the group, including cake for the birthday boy. Our family ditched everyone for a bit to go further up the mountian to Cedar Breaks National Monument and snag a campsite for the weekend. We got our tent set up and joined back up with our crew in time to go to the Greenshow at the Cedar City Shakespeare Festival.

Every night of the festival there is a free performance before the plays. I have no idea what has been on offer in the past or if the show is the same every night. But the one we caught had a sort of German/Irish-pub/beer theme to all the singing and dancing. They were quite good and even the younger set were entertained by it all.

Some photos from the rest of our weekend spent doing the usual camping stuff in the amazing weather found up over 10,000 feet above sea level.

junior ranger hike

I think he's seen one too many Facebook photos of our teenage friends.

atop Brian Head

just having a rest

Kodachrome Basin

Mostly pictures - not too much to say about the trip. Had a great time with my guys and we wore ourselves out hiking.

Saturday - Panorama trail

Sunday - Angel's Palace trail

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

the bowm-chicka-bowm-bowm spire as seen from our campsite

Grosvernor's Arch

Drove out there Sunday and had a great picnic supper with an incredible view before heading home.

for my home(school)girls

Here are a couple of the youtube videos we talked about last night.

Paula Deen loses her pants!



literal Total Eclipse of the Heart

Lookie what came today

As I mentioned earlier, our old Kodak was having a problem with the shutter sticking. So, rather than repair a 4 year-old camera, we shopped around for a new one. We found a great deal on this one for right around $200. 10 MP, 20X optical zoom and way more gizmos than our old camera. I shot a few photos in the backyard today. We need to get an xD card so we can use the panorama mode, but otherwise I am very pleased so far. It works great in auto, has tons of 'scene' modes and can go completely manual if I can ever get confident enough to use that! Very exciting, indeed.

This stuff is like crack!

I picked up a bag of the buffalo cheddar flavor last week. Thomas and I had movie night both Friday and Saturday because Mike was out of town. I ate the whole stinkin' bag over the course fo those 2 nights. Yummy! I think I'll pick up a bag for our camping trip this weekend. Because junk food consumed in the great outdoors doesn't count, right?

Thanks, Jose!

I am still not altogether sure whether this was a good plan or a bad plan. Yesterday I was feeling crummy from sinus/cold/allergy junk and had a pounding headache all day. I went to the grocery while Thomas was at Cub Scouts (because, believe me, otherwise I was NOT leaving the house yesterday). The avocados looked particularly good, so I picked one up to make guacamole last night. Just sounded good. And when I went in the fridge to get a lime for the guac, I saw the bottle o' margaritas leftover from last Mom's Night sitting there all innocent-like. So, yeah, my dinner consisted of some really good guacamole, chips and a couple of margaritas . . . followed by more benadryl and tylenol. Let's just say that I fell asleep really fast and early.

Apparently I dropped off the face of the earth.

But I'm back. And I have photos.

Thomas getting his Wolf badge

Mike & Thomas at the Dixie Scout Expo

We went camping this weekend. We first drove up to Cedar Breaks. It was super chilly and windy at 10,000 feet. The shutter on my camera is acting stupid, so there are no photos of that.

Then we stopped in at Kodachrome (everyone, sing along . . . gives us those nice, bright colors) Basin State Park. We took a short little hike out to Shakespeare Arch. Looks like a place we'll head back to sometime for a weekend. Nice campground & lots of nice trails.

Shakespeare Arch

Next we did a bit of a drive-through of Grand Staircase-Escalante state park. More nice campgrounds & trails for a future trip. But we pressed on toward our final destination & set up camp at a private campground in Torrey, outside of Capitol Reef National Park. Sunday we drove around a bit, though many of the roads were closed due to rain. We tried to hike a bit, but were rained out of most of what we wanted to do.

Panorama Point

Freemont River

We had intended to hike out to Sunset Point & catch the sunset. We decided against it because of the storms in the area -- not wise to be at a high point in a lightning storm. I so wish I had a fancy-schmancy camera with a wide-angle lens that could have captured this. We saw the entire arch of this double rainbow. So amazing.

More rain on Monday. We did attempt to hike to Hickman Bridge. We started in sprinkles and turned back halfway there because the rain just kept getting heavier and heavier with lightning and thunder.

Capitol Dome



turning back

treeboy