Wednesday, October 24, 2007

Medical Update

I will give you the full updates since the others have been in bits and pieces.
Orthopedics: According to the Ortho doc, there are good kinds of flat feet and bad kinds. Little Man has the good kind and has no need to return unless his feet start hurting him. Yay!
Hematology Labs are currently normal and he does not have a very mild type of bleeding disorder called Von Willedbrands. Yay!
Psychology I am not entirely thrilled with the psychologist that is coming to our house. She got a vote of no confidence by declaring that she did not "believe" in ODD. I was thinking, gosh is that like Santa Claus? If you don't believe than it isn't for real? She did have a couple of good ideas, but sadly, there are no quick fixes. We are working on some new stuff and it is helping. Yay and boo.
Neurology LOVE the new neurologist and the PA. Good news, his seizures are doing well, bad news, according to the manufacturer his VNS is due to fail by the end of December. A definite boo indeed here.
And more boo to come. I heard from the Neurosurgeon's office and the nurse said Dr.Tall and Thin would prefer to see his VNS fail, rather than replace it too soon. My best guess was Dr. Tall and Thin did NOT remember the life threatening infection and complications following the last implant. I had an appointment with him on Monday. I was right, Dr. Tall and Thin did not remember the whole fiasco. When he asked me why I hadn't brought Little Man with me, I responded with, "because I am not crazy, that is why! You don't need to see him, he is fine, you and I NEED to talk". I told him that I had been told by the neurologist that allowing the VNS to fail would most likely result in us not ever getting the kind of seizure coverage we had gotten before, and because of Little Man's long history of horrible infections, we could not risk doing this surgery emergent and would need to schedule it ahead of time so we could do a course of antibotics first. Dr. Tall and Thin nodded his head and said he could certainly see my point. How about Dec 4? Good for the quick surgery date. But, then came the part that made my heart sink, yikes. In my head I was thinking we would go in a day or two early and stay a day or two after for IV antibotics. Nope. I was told it is going to be a longer time with Little Man getting the antibotics. It will be up to Infectious Disease to decide, but we will be going in a few days earlier and getting another PICC line. I even provided you with a nice linky doo explaining that thing. The words seem very cold and exacting as they explain it. But the reality is insanity. (They need to have a nice asterisk there, with a note) Be prepared to lose your mind and your nerve. Pumps, medications, hooking, unhooking, alcohol wipes, W.A.S.H. technique, (because, you see, if you fail in that, your child will get an infection in their line, which leads straight to their hearts! Do you comprehend the level of guilt here??)home health care, nurses, teachers and schools need to be taught and the stupid lines need to get changed and the line will get air in it at 3 in the morning and the pump will beep and beep and I am supposed to wake up and flush the line even though I am too tired to breathe and oh my gosh, my stomach is just rolling with anxiety just thinking about it. And HEY this is the GOOD news! Because a couple of weeks even a month of antibotics is much better than allowing our boy to get an infection that could very well kill him and end up on a PICC line for 3 months like last time. I was just learning to breathe. I better stop that. Time to hold my breath again.

And to end this on an upbeat: I did the Hill of Pain yesterday without stopping, not even once! I was dead when I got to the top, but hey! I did it! Whoot for me!

7 Kids Who Want To Play:

elizasmom said...

First: Yaaaaay! on conquering the Hill of Pain. That is an achievement indeed. I suspect you will do just fine in San Francisco!

Next — well, I guess the Little Man's issues are a mixed bag, but I am glad that you have some good news in there. As for the VNS, yikes. I'm glad you have the Doctor seeing things your way r.e. his safety and well-being, but how daunting! I am proactively sending good thoughts your way that everything goes smoothly and no scary things happen (at least, none in addition to what you're already expecting as a consequence of the surgery).

Yondalla said...

Congragulations on the hill of pain, and convincing the doctors to do the sensible thing.

You can do it.

bon said...

Yaaaay! And Boooooo, hiss! Bloody PICC lines. I'll take a g-tube over a PICC line any day of the week.

K J and the kids said...

yaaay, yaaaay,, BOOOO !
I'm sorry. Good luck !

Granny said...

It's a mixed bag but I'm happy about the good news.

Jenny said...

Yaaay for Mother Bears fighting for what is right for their cub!

Sue said...

Oh, Jo, I'm sorry. You are so strong. I would just fall apart if I was dealing with all of this stuff. I'm so impressed by how you fight for what you know is right for your kid's health. So many of us defer to the doctor, even when we know they are wrong.

Wow, I'm impressed by the hill of pain! When we finally go walking, you are going to totally kick my butt.