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!

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.

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

lazy days

So much of the time it seems our family is dashing from one place to another. Not day-to-day, my-kid's-life-is-overscheduled-school-karate-Monday-scouts-Tuesday-church-Wednesday dashing. We don't do that. Thomas had been activity-less for a long time before we joined Cub Scouts. I'm talking about our constant traveling. We've been staying put since New Year (except for my grandmother's funeral and that was just a few days and just me and I don't think it counts, right?) and I like it. I mentioned this to Mike's mother when they were here Valentine's weekend. Mike gave me a look. So I asked him about the look. It meant he was going stir-crazy and is getting the travel bug. Like a friend said, I think he's part Gypsy.

So we've really just been hanging here at home. So nice. I've been pretty much staying caught up with the laundry and the housework. There are no suitcases in various stages of packing and unpacking littering my bedroom. Things are downright calm. So calm and mundane that I'm not finding much to blog about. Nothing seems really *noteworthy* so the blog had gone without much updating. Sorry folks. I can tell you the mundane things we've been up to. Hold on to your seats, kids . . . ;)

Cub Scouting is going along swimmingly, despite what appeared to be a rather unorganized and haphazard first few den meetings. I think the poor lady running the den is just overwhelmed. I've offered to help, but she's not taking me up on it. Oh well, we'll just truck along and do our thing. Thomas finished his Bobcat stuff and one Wolf requirement after the first week. He finished 2 more Wolf requirements the next week. This week we'll turn in 3 more requirements. Sadly, I think that puts him ahead of a few of the boys in our den.

We went to our first pack meeting last Wednesday (an aside . . . WHY WEDNESDAY?!? Do these people not know LOST is on?? Seriously, it's the only show I really care about on TV.) which happened to be the Blue and Gold Banquet. They asked Mike to be the Cubmaster. Did I mention that it was our FIRST pack meeting?? The guy who is doing it now has been for the past 3 years, I guess and is ready to not be Cubmaster anymore. And they know that Mike is an Eagle Scout. I guess that's all they need to know?? Now, we did mention when we signed Thomas up that we'd be happy to help and asked for adult applications. "Help" and run the whole show seem to be two different things to me, but we'll see.

Speaking of LOST . . . DANG! It is sooooo good this season. I'm geeking out over it every week. Just about every Thursday I'm ending up spending the morning over at The Fuselage reading what the other geeks are thinking and theorizing. Then my pal Toni and I hole up in a corner at park day on Fridays and talk about it. BEST. SHOW. EVER.

We've been making it to the library regularly again. Regularly enough that we're not paying fines every time we check things out now. I've been having time to read again. So nice. Mike's sister, her husband and I are doing an A-Z challenge over on Goodreads . We're supposed to read books from authors with names beginning with every letter of the alphabet. The group is open to anyone, so if you're a reader and want to participate, you can find me on Goodreads and join in. Right now I'm reading A Prayer for Owen Meany. That would be my 'I' selection. So far, so good. Except that it was seeming really, really familiar to me, yet I knew I hadn't read it. Wikipedia to the rescue. Turns out the movie Simon Burch was loosely based on the first part of the novel. Weird. Why only the first part?

Brown Day

We love our UPS drivers!

Yesterday we got most of our Amazon order and our Rainbow Resource order. New stuff for school! Yippee!

What we have here:

more logic books - Thomas LOVES these and was really irritated when he finished the last book of them.

the teacher's manual for Thomas's new science - still waiting for the student books to come, but at least I can start picking up the supplies now

window chalk markers - I'll let Thomas practice his spelling words on the patio door

new mazes & dot-to-dots - I call these his brain warm-ups. Really I have him to them for fine motor practice, but he doesn't need to know.

knights stained glass coloring book - another sneaky fine motor activity

Case Closed - a little book of mini-mysteries to solve using clues in the story and illustration

In other news, Thomas is still very enthusiastic about Cub Scouts. Today we will be working on a banner to display his collection of National Park Junior Ranger badges. This will complete another requirement on the Wolf trail. You know I'll post it, right?

super slacker

I am such a slacker. Between my addiction to facebook and having computer problems, I haven't blogged since December. SLACK-ER! Mike changed out the motherboard in this machine, though, and so far so good. *crosses fingers*

We've been good, though. Mike's parents came here for a Christmas visit. (I think that's the last I posted.) We went to Indiana for a Christmas visit. I went to this guy's New Year's Eve party in Greenwood. Had a good time with friends from high school and *bonus* saw Subway Jared there, too! There are photos & I was going to share one. Not on the hard drive, though and I can't locate the CD right now. Hmmmmm.

My grandmother passed away in January and I went home for the funeral. It wasn't unexpected and she was in a lot of pain at the end, so it was really a relief. I wasn't sure, because of the timing (a few weeks after our Christmas trip and only 1 week before a scope trip) if I'd get to make it. Things worked out with airfare, Mike being able to take care of Thomas and work from home one day. And I'm glad they did. Closure and all that, you know.

Thomas was supposed to be scoped in January. But while I was gone for my grandmother's funeral, he ended up with croup and a trip to the emergency room. We did manage to avoid steroids at that time, but because of his history with post-op complications and a narrow airway, it was decided it was best to postpone. So now we're playing the rescheduling game with Cincinnati again. So much fun.

Japanese culture day put on by my friend at A Spot to Reminisce and Discourse

Thomas and his friend Optimus Prime doing Japan-related crafts

Schoolwise things are going well. We're back in the groove and cruising along. Thomas is about to finish up his astronomy text, so we're moving on to chemistry soon. Placed the order yesterday and am hoping it will arrive pretty quickly.

We've been spending time getting to know Mike's boss's family lately. They're a really great family who moved here from Spartanburg. Went to their house for the superbowl. They were all dressed in Steeler's gear, including the dog, lol! Too cute!




We've finally gotten Thomas started in Cub Scouts. We didn't want to join a pack run by one of the wards here and had trouble getting the info from the community pack. Finally ran into the right person, at our church, no less! Thomas is pretty into it and spends a lot of time with his wolf handbook thinking about all the cool stuff he's going to get to do.

more snow

It snowed most of the night last night and we ended up with 3" or so of snow. Enough to really play in. So first thing after breakfast we blew up T's snow tube, bundled up and went out to the common area behind our house to play.

Thomas's snowman

snow angel

my snowman

T's snow train

hugging the snow man

mad scientist

We got a gift from the in-laws (thanks, guys!) last night. Omaha steaks for Mike & I. What the in-laws did not bargain for was that it was just as big a gift to Thomas, even though he can't eat the food. Why? Dry ice.

And a few stills for the video-impaired.

snow pics

SNOW!

Yay! it's snowing!! Not much is sticking to the ground, but Thomas and I went out to play this afternoon anyway. We don't get much in these parts, so we make the best of what we get! I took pictures, of course, but have to wait until the other computer boots to upload them. It could be awhile, folks. Just sayin'.

super nerdy science time

Who knew a little salt dough, dish soap, food coloring, baking soda and vinegar could make a kid this happy?

chemistry!

Thomas has been wanting to study chemistry. And I've been putting him off like a good homeschooling mama. lol. I know he has visions of mad scientist-type experiments. I have visions of the house blowing up. Seriously, though, the real reason I've been putting him off is that I didn't know of any chemistry curriculum that was age-appropriate. Until now! Real Science 4 Kids chemistry

So when we finish up our astronomy text in the next few months, we'll start in on this. Yeah!

yes, this is how we treat our guests

Uncle Ron totally humoring Thomas

San Diego

Took off last week for San Diego. It was a trip we had been planning for awhile, just kept putting it off for other things. But, it was getting way past due for Thomas's birthday present, a trip toLegoland, so we finally got it together. We stayed in a surprisingly nice Travelodge in LaMesa, CA. Mike said it had recently been remodeled & used to be a Ramada - a step up the Wyndham food chain, I believe. Good room, very clean, typical continental breakfast offerings + the make-your-own-waffle station and super helpful staff. Incredible considering we paid $50 for the weekend nights and less for Tuesday - Thursday.

petting bat rays

feeding the bat rays

We rode this. A lot.

Journey to Atlantis - kind of a cross between a roller coaster & a log flume.

mama & baby koala

Thomas working on getting his license at the Volvo Driving School

Let's just say, you people should all be very frightened in 9 years.

Mike & Thomas on some sort of robot arm ride

Thomas driving the boat. Again - frightening.

They had this cool place where the kids could build cars, test & race them.

Here's Thomas with his creation.

Why, yes! We are homeschoolers.

We had a great time. We did 1 day at Legoland, 1 day at the zoo & 3 days at Sea World. It was a nice change of pace from the past several trips. Once we were done for the day, it was time to relax - no cooking or cleaning! Thomas liked Legoland the best. I really enjoyed Sea World. Mike enjoyed the trip to Trader Joe's where he bought 25 different varieties of beer to try out.