March 13, 2013


Our dear friend Haylie passed away. One of Ben's VACTERL friends and a true fan of little kids. She has Skyped with our kids almost as much as grandma. This just stinks.

March 11, 2013

A new friend for Fentanyl


Pentobarbitol is the name of the sedation medication that made Ben drunk and vomitous after last week's sedated MRI. Pentobarbitol gets to become good friends with Fentanyl by joining the official ****list.

Confirmed the drugs used with the anesthesiologist who called me this afternoon to see how Ben is doing. They are going to re-check the dosing all the way back to the pharmacy order. She said in the future consider general anesthesia. She also said they *could* use Dexmedetomidine (what he's always had for every sedated MRI in the past with noooooo problems at all), but they don't use it as often for whatever reason. And they don't do bolus Propofol. Apparently. I'm checking into it further because it seemed weird to me. Maybe it's just the Liberty branch that is like this and not the main hospital?

Anyhoo, Ben is back to school today so we will see how that goes.

March 09, 2013

Much improved

And actually playing with (instead of passing out on) his new Legos.

Oh what a beautiful (but really stinkin' early) moooooorning!

Ben is doing soooo much better this morning! Unfortunately this morning started for him around 4:30am. We agreed on trying out the hotel back fast as long as it s all clears and breads...which it turns out there is an abundant selection at a hotel breakfast. And you're really in luck if you like fruit loops with apple juice and waffles and chocolate donuts like Ben does. ;)

So I realized this morning I forgot something major from last night...majorly good! At one point the attending came in and was practically bursting at the seams with giddiness. He asked, "Have you gotten the results of the MRI yet?"


"We'll the radiology report says no re-tethering!"


We still need the neurosurgeon's read on everything, but this is definitely good news.

All three

The zofran worked! Turns out he can now get the full 3mg melt and not the 1.5mg I'd been giving him. He downed 4 Popsicles (2 red, 1 orange, 1 purple) and at one point asked the attending to get "the Popsicle waitress" for him. That would be the nurse. Ha! So he was discharged with a take home Rx and much improved.

On the way back to the hotel he told me he was hungry, thirsty, and sleepy. I said, "okay, let's get something to eat, something to drink, and go to sleep."

"How about we do all three in bed!"

Ok. :)

March 08, 2013

Guess what

Yeah, we are at the ER. When it was 10:30pm and Ben was still throwing up, hadn't eaten anything since 10pm last night, and was still acting ... Well ... Drunk, we gave up and called radiology. Spoke to a tech who spoke to some rad who said "bring him in." Which was good enough for us, but I procrastinated for a while...packed some stuff, chatted with Mike, blah blah blah. Then my phone rings and it's the radiologist on call who is all "I was JUST handed a note from the tech about Ben and DO NOT hesitate to bring him in."

So after my heart palpitations stopped, I dragged (literally) him out to the car and drove to the ER.

Where they were waiting for us and all "Dr. Blahblahblah called and blah blah blah." My backside didn't even get to sit in a waiting room chair he was triaged so fast.

The ER attending came in our room before the floor nurse. Then the usual barrage of students filed in (because Ben is oh-so-exciting). The attending at some point explained that the radiologist who called in to the ER (and who called me) was the one we saw this morning. And he said, "Dr. Blahblahblah said if mom is at all concerned SOMETHING is wrong because she is on top of it."

Now I'm trying to think what I did this morning to get the "on top of it" reputation...

Anyhoo, here we sit in the ER where they say he is moderately-severely dehydrated. We are putting all our money on the Zofran he just got because if he can't keep anything down with this med he is getting another IV. And another IV means we have to buy him another toy, bringing the grand total to THREE. ;) Fingers crossed!

Sedation schmedation!

Whatever sedation meds they used have really done a number on our little guy. He has been awake maybe 10 minutes total in the past 6 hours. Which is good because when he's awake he is...well...exactly like a drunk. He can't walk. He slurs his speech. He pukes. And then he falls asleep again.

The good news in all this is he puked on the bed. Stay with me here! He puked on the hotel bed which meant a change of sheets. Still there? The change of sheets led to my discovery of a pill in the bed. Still not seeing the good news? The pill landed us a free night at the hotel. There! See? Free night = good news. :)

The pill was an anti-seizure med, by the way. Yes, OF COURSE I looked it up.

MRI done!

Ben's MRI this morning went well. We tried to do it without sedation and HE tried sooooooooo hard to "be ice and still"...but it was a nogo. So it took 6 of us to give him the IV sedation. Even angry and drugged he was prolific with the nice words "Please don't hold me!", "No thank you to shots!" and "Excuse me, but I was just moving because I have to breathe." He's still super groggy but I managed to carry him out to the car. Now I'm just driving around so he can sleep it off. We should have results in a few days. Fingers crossed that his spinal cord hasn't re-tethered!

March 01, 2013

Best ice cream social EVAH!

A local Girl Scout troop hosted an ice cream social tonight at the Ronald McDonald House. Unfortunately, the group serving dinner provided a sundae bar for dessert so nobody came to the Girl Scout event. Except Ben. Lets just say HE declared it to be "The best ice kweem soso evah!"