Monday, July 20, 2009

Update from Vanderbilt...

I can honestly say that I have never been more disappointed in a doctor's visit in my life!! I do not lie when I say that I learned absolutely nothing from today's visit! We, (my mom, Matthew, Jacob, Ashlee and I) arrived at the hospital really early and while we were all taking turns going potty, there is an alarm announcement over the loud speaker that says there has been a code red (or something...it's getting late and I really don't remember!) on the 7th floor. No one is leaving the building and all employees are going about their business as if nothing has happened. We walk over to the elevators, which we have to use to get to the 9th floor, and they are not working due to the alarm. The line grew longer and longer and longer, and I have never seen such rude people cutting in line in all my life!! We finally make it to the right floor and would you know, it was right in the nick of time! We wait for a little bit in the waiting room and then we are called back. Matthew and I were met in the exam room by a medical student, which is normal prodical for this office, and he commences to gather all of our information on concerns that have arisen since our last visit. I go into great detail explaining especially the last days events and he does a little exam of Matthew. He goes out and confers with the physician and then accompanies the physician back into the room. The actual neurologist came in and says that what he has heard from the med student seems to just be due to Matthew's "condition". Uuhh, okay?! He said it seems that Matthew has all the necessary people in place to provide his day to day routine, so his question then was what is his role in Matthew's care. He didn't feel it was necessary for him to see Matthew any more and released him with an "honorable discharge". He would stay in the wings and if something came up that we thought he could help with in the future to feel free to call him. Well, alrighty! In those few words, I decided that he pretty much had no idea how to help Matthew, so it wouldn't be of any use to proceed. I did ask about the MRI again, and he said it was one of those instances that they could describe the findings of the test, but had no clue as to why it was the way it was. That let me pretty much know that they had no clue what to tell me. Golly gee! What a waste of our time!!

My next course of action is as follows...Matthew has an appointment on Friday with our pediatrician for his physical for school. I have several things that I want to ask her opinion on, and go from there. Then, I will probably make an appointment for a re-evaluation at the Weiskopf Center in Louisville. This was where Matthew received his confirmed diagnosis of autism over three years ago. It is time for his re-eval anyway, so I figure it can't hurt to see what they have to say. They surely couldn't tell me any less than the folks at Vandy today, and I'm curious to see how Matthew has progressed since our last visit there. I will say that he had another rough morning this morning. It was different than yesterday in that he was already awake when he started this morning. I just can't help but worry that something is hurting him, but remain rather clueless about it. I'm going to run my thoughts past Dr. Stewart on Friday and see what she thinks, and hopefully will be able to eliminate some things. It hurts me so much to see my little Matthew hurting himself and be so helpless at the same time. I don't want him to hurt someone else and I don't particularly take to having all the hide stripped off my arms either, BUT, my main concern remains to be that I don't want Matthew to hurt himself, and that is exactly what I'm afraid of. The intensity in which he hits himself I know is painful, but him hitting himself in the head that hard surely poses a health risk.

My big thing is that I never wanted Matthew to be medicated. There, I said it. In the beginning, that is really the main reason I didn't take him to be evaluated sooner, because I was afraid they would put him on medication and it would put him into a zombie state. Or that there could be adverse side-effects. Right now I am to the point to where if they told me that medication would be the thing to help Matthew keep from hurting himself, I would have to try it. This is all so heartbreaking and down right gut wrenching and a day like today that is filled with more questions than answers, sure don't help. There are just so many unknowns that just leave you wondering. Oh believe me, I still consider our family a blessed one, and I truly know that things could be worse. Just going to the children's hospital and seeing the health conditions of some of the children there, sure makes me appreciate and be thankful that things are as well as what they are with my little family. I know it could be so much worse.

Okay, enough of that! At least the day wasn't a total waste!! We left early and went to Opry Mills Mall! LOVE IT!!! We got Matthew's school shoes and since there was a buy one get one half off sale, we got Jacob a second pair as well. (No one else could find any they needed and we hated not to take advantage of the sale!) Jacob got his little Build a Bear Puppy a pair of pajamas....that is just the cutest little store :o) The Children's Place had some great sales going on and both boys got some things there, and then...would you know that Matthew is now big enough for AMERICAN EAGLE and AEROPOSTLE!!!!!!!!!! He got two shirts from each store, and they were all on sale! He is going to be one stylin' 6th grader ;o) I've included a few fun pictures from the day so you will end reading this blog post on a happy note!!!!! =)

On the ride to Nashville...Jacob loves Ashlee!
When he was a baby and first learning to talk, he called her yee-yee :o)
By the way, Matthew had been making some silly faces and I captured an in-between look.

She was reading to him. I heard her tell him at one point that the boy character was going to start talking all sweet to his girlfriend and tell her she was pretty....I have no idea what she was reading :o)

Ain't I just the sweetest?

Jacob taking a ride on the carousel at the mall.

Pretty good shot for the the ride to be moving!

"Um, hello...I'm pretty sure Mom said for you to SMILE while reading this!!"

9 comments:

Jenni said...

I guess you could say no news is good news. It stinks that you couldn't find out more - I think the Louisville route would be a good choice, since they are the specialists.

At least the day wasn't wasted. Sounds like you made the most of the day at the mall. Did you guys make a stop at Cracker Barrel?

Nan said...

That is so funny that you mentioned Cracker Barrel! Since it was getting really close to 5:00 and the traffic was already bad, we wanted to get closer to KY before stopping to eat...and since we were all tired, we just wanted to do a drive-thru so we could get on home. Just as we were heading out, Matthew got so excited...low and behold he had spotted a CB sign quite a distance off! He got so mad when we passed each one on our way home, so I told him we would try to go one day this week...hey, sounds good to me! BTW, we stopped at McDonald's and I got him some cinnamon melts and a cheeseburger to try since he did eat Christie's here while back, and he ate well over half of it!!! And all the cinnamon melts of course.

An update from last night...Matthew awoke around midnight in one of the terror fits. At least Jason was home to help me, since it was so early, but Matthew about got the best of him. He was trying to restrain him and Matthew slapped him right across the face. He managed to hold down his hands and then Matthew head butted him right in the nose. I'm pretty sure he saw stars. The sad thing is, Matthew turns into a little raging bull. I managed to caccoon his body in a quilt with his head sticking out and he finally calmed (after a long time!) and went back to sleep. Praise be he was peaceful the rest of the night and morning!

Julie said...

I'm sure you were super frustrated after the appt. At least you got to shop! HOpefully you will get some helpful news in L'ville.

Heather said...
This comment has been removed by the author.
Heather said...

I am the deleted comment. I was right in the middle of a sentence and the phone rang. Without realizing what I was doing I just posted the comment in the middle of my sentence. Oh my...crazy!! Anyways, sorry that it was one of those visits that you feel was a complete was of time. We've had a few of those too. On the other hand, Opry Mills always makes it better:) I hope you get some answers Friday.

Brooke said...

Can't imagine how frustrated you felt! Bless your heart! At least you managed to salvage the day with a fun trip for you and your family. Glad everyone made it safe and sound. Hope the night terrors get better. I hate that so bad for you guys!!

Tiffany Vincent said...

I agree-I'd say a trip to Louisville is a good idea. I'm sure you will feel much better after going over everything with the specialist up there. I'm glad you all enjoyed Opry Mills! Looks like Jacob enjoyed the carousel. Looks like you all had a fun time despite the frustration @ the doctor's office.

Wanda May said...

:-000. Me screaming for you...ugh...I wish that every Dr. and every kind of Dr. could experience what we go thru...(we when we hurt and what we go thru with our kids)and I would love to see them 2 at Vandy get a good ole Matthew head butt right across their smug faces..... Lord I apologize and be with them dang pygmies...

Kristin said...

After reading your post, I think EVERYONE in the family would benefit if Matthew had a night-time sleepy medicine. Just some type of presciption taken prior to bedtime (only if needed), but allows him to wake non-zombie(ish).
Mama knows best, you would know if this is needed!
Code RED=fire drill...elevators won't work. You had some bad luck at Vandy. On the brighter side, at least you won't waste your time there anymore!