Anesthesia Twice in Two Weeks?

Kendall recovered from the traumatic experience.  And the same procedure under anesthesia is scheduled for this Thursday.  I'm actually sick about it.  We have to do it the facility where the Dr.'s office is.  He doesn't apparently have any privileges at any of the children's hospitals.  Imagine that.  Our ophthalmologist's office even got involved trying to schedule with them so she would only have to go under anesthesia once.  He wasn't having it.  I'm not surprised that he doesn't play well with others...

I'm going to put her in God's hands and go with the flow.  But it sure does make me nervous not to have a pre-op or pediatric anesthesiologist.  They have no idea what they're in for. 

I may sound slightly calloused, but really what the hell am I supposed to do?  This is our only option.  Everyone I have talked to says the same thing.  This guy is the worst with kids and parents, but world renowned.  Whatever.  I just can't wait for him to try and make my 6'5" husband upset.  Justin's very slow to anger....but the one time I did see him angry, it was because somebody messed with his little girl.

In other news, Kendall has a video EEG scheduled next week, and an examination under anesthesia for her eyes the week after that. 

And believe it or not, she's been sleeping with that darn wedge every night for at least six hours.  Baby steps. 

Kamden may or may not be testing for his black belt this weekend.  He's worked his little butt off, but we won't know for sure until Friday night.  He has to break boards in class on Thursday.  I'm full of anxiety about all that too!

I can't wait for this week to be OVER.

Please keep us in your prayers.

Yet Another Fiasco...

Ho Hum.

We went to do the urodynamic testing today.  The Dr. (the neuro urologist) was a nightmare.  He had the absolute worst bedside manner.  We see a lot of specialists, and this one was by far the absolute worst.  Some of his ridiculous comments included...calling Kendall "mentally retarded," and telling me to work on my "frazzle level" and "lowering my standards for her care."  I couldn't even do his horridness justice by telling you, but let's just say it was bad.  Really, really bad.

They took her back to the procedure room where her home health nurse and I held her down and a sensor with needles was placed in her rectum.  From  there, these nurses who "do this all the time"  (but apparently not frequently on young three and a half year old girls) proceeded to attempt over three times to cath her.  We didn't even make it to the part where they injected the dye for the test because she pushed out the catheter when they were finished taking out her urine.  In the room, the nurses informed me that they can do this under anesthesia.  They warned me that there was also the possibility of putting her through all this and the test result still not being read properly because of all the movement.  Kendall was screaming in agony, and I made the call to stop.

Our appointment with our urologist was cancelled by them and we were given instructions to schedule the procedure at the same facility under anesthesia.  The Dr. ran her urine and told me she didn't have a UTI, and then followed me out to the check out lobby where he made me cry again talking about how I need to take care of myself first if I'm going to be expected to take care of my child.

I guess in his eyes I'm a basketcase.

But he also doesn't know that I've never cried in front of one of Kendall's  Dr.'s before.  Ok, maybe I have, but not in a long time. I don't lose my composure easily anymore.  I had just spent an ungodly amount of time holding her hands while she screamed and writhed in pain.  I wasn't prepared to get the speech about how "God has a plan for my daughter," or the part about how "she has a lifetime of issues that will require me to face tough situations."  Especially from a pompous Dr. who specializes in old lady incontinence. 

Problem is, he's the only one around.  And supposedly the best.


But he doesn't have the ability to put a kid under anesthesia at our beloved Cook Children's Hospital.  They don't even have his role at the hospital...so our hands are tied.  She needs the test, and we have to do it. 

I guess between you, me, and the fencepost, the most upsetting thing about this whole ordeal is this:  Because Kendall is considered delayed, and has a label of CP, and lots of other things, they didn't treat her like a typical three and a half year old girl.  They attempted to do this procedure on her while she was wide awake.  Completely aware of what was going on.  (She clenched on to her nurse's arm as she tried to put her down on the table, clearly petrified.)  And it took me close to 20 minutes to stop them.

So now we wait to schedule it under anesthesia.  More waiting, and more worry.

ps:  I actually shortened this post A LOT.  I really wanted to go into more detail, but I'm working on my frazzle level.

Right....

She's going to sleep like this for the next three months.  OK.

Orthopedics and Urology Update

We had Kendall's appointment with her orthopedic Dr. yesterday afternoon.  They took a few more x-rays and delivered the news:  she does in fact have bilateral hip subluxation.  When she's on her back with her knees out, her hips go back in socket.  When she has her legs straight out, they are a little over 50% subluxed. 

Her spine is fine.  No scoliosis.

We will begin botox next month.  She will sleep with a wedge.  Hopefully this will help, but it won't fix the problem.  Muscle surgery (and the body casting for 6 weeks after) will likely happen for Kendall sooner rather than later.  I am investigating (aka...utilizing my global resources!) different hospitals, procedures, and options just to make sure we make the right decision.  Again, I wasn't ready to cross this road so early, but we play the cards we're dealt.  If any of you have experience with this, I welcome your input!

Her urodynamic testing was scheduled for February 29.  That was the earliest appointment they had.  I don't usually accept the first answer I'm given, so I called back twice to see if there were cancellations...despite the nurse's first answer of don't call us, we'll call you from the cancellation list!  Fortunately, there was a cancellation and my persistence paid off.  She's now having the test next Thursday with the neuro urologist (who knew that guy existed?)  and a follow up that afternoon with her urologist.  From there we will make further decisions.

So, that's the latest.  I'm still pretty emotional about it all, but since I've been super busy, I haven't really thought much about it.

Tomorrow I am going to a meeting at Kendall's school to learn the second device in our trial.  It's a PRC with Minspeak. (insert my squeals of joy here)  I'm excited that there's now a plan in place.  She should have her own device by Spring Break, and there is training already in place for all that interact with Kendall. 

January is plugging along.  I only had three fits in the pharmacy line this month, so the year's off to a good start.

Self Feeding

Sunday evening we were trying to get Kendall to eat orange slices by herself.  She can do it.  She self feeds for a lot of people at school, but rarely for us at home!  It's way too easy to have Justin or me put the food in her mouth :)

So Justin placed the oranges on the tray and walked away.  Then we peeked around the corner and Justin was able to catch her doing this!  About 45 seconds into it, she sees the camera, but by then was enjoying the flavor too much to stop...

Silly girl.

The video should turn itself upright when you hit play.  I put music in the background to spare you the panting dogs beneath her tray just waiting for her to drop a slice.