Wednesday, March 11, 2009

Botox - Take One - Our Experience

Let me preface this post with this video:

Since taking this video, D's poor foot has only gotten worse. She has been getting lots of red rub marks from her DAFO (which works, her foot is just stronger right now). She looks great in her DAFO and shoes, but out of them, she is walking way up on the side.

Fast forward to today, we headed towards the Children's Hospital bright and early (actually, it was still dark and Darsie was telling us that it wasn't morning yet and that we needed to go back to bed - I agree!). Because we were planning on sedating her, we were checked into the day surgery unit. We played around for a bit before heading towards the Sedation Station (or whatever it was called...oh wait, Sedation Services. I think I like Sedation Station better). There they took D's history and applied three huge gobs of numbing cream with a clear sticker to various spots on her arm. We headed to the playroom for a bit to let the cream go into effect. After about 20 minutes, we were called back to the Procedure Room (D actually drove there in a plastic car) to insert her IV and get her Botox shots done.

My husband held D while the nurse inserted her IV. Of course D cried, it was painful! Ended up, the IV didn't get placed. D has a lot of scar tissue on her hands and arms from the months she spent in the NICU and the hundreds of times she must have been stuck for blood, IVs, etc. etc. Second shot, they decided to try to lay her on the gurney and insert the IV. A second failed attempt as the IV just didn't take. They brought another nurse in to check D's veins and while she thought that with a tiny needle she could get an IV started, her doctor was confident that we could power through the three Botox shots quickly and successfully with just a local numbing agent. So, that is the option we went forward with. She cried and screamed throughout it but as soon as it was over, she was fine. I can't imagine that three muscle shots would be pleasant for anyone, but baby girl powered through it and by the time the three shots were done with, she was more concerned with getting more stickers and cool bandaids for her pokes.

Because she ended up not being sedated, we were able to head out after only being there an hour and half or so and go eat breakfast. Yay for coffee! Yay for food!

D conked out pretty quickly once we picked E-lou up and headed home (they both did, actually, must have been the too early morning!).

On Monday we are tentatively planned to start serial casting that foot/joint as well to help improve range of motion and help to "break" that muscle's memory.

I'll keep you all updated!

12 comments:

Swistle said...

I am SO interested and hopeful.

Also, they TOTALLY should call it The Sedation Station.

Nowheymama said...

Me too! I am glad everything went as well as it did.

Now I've got "Conjunction Junction" in my head....

Laura Marchant said...

What a trooper! Glad everything went ok.

Katy said...

Sedation station is better!

I think I told you this, but a little boy around here got botox and started taking his first steps afterwards. Done right that stuff can be really amazing.

Mommy Daisy said...

Oh, poor D. I'm sure it killed you to hear her crying. But I'm hopeful it will all help and end up well. Definitely keep us updated. I'll be interested to hear. Go D!

Anonymous said...

So pleased all went well, I bet you are glad that is over with!
Sending best wishes
Abi (from UK)

Anonymous said...

Hi. I just wanted to let you know that I found you through searching for CP. I've read this latest blog and I have some questions for you regarding treatments you use for your daughter. My son, Jeff, has CP and we are talking about Botox and braces and other treatments. Please email me at alskwirut@comcast.net. Thank you so much for sharing your daughter with us! Blessings.

Pickles and Dimes said...

I agree with Swistle; this is really interesting. I can't wait to see how it affects D and her progress.

Sarah said...

Poor little girl- I hate shots! She sounds like a trooper. Kids are so resiliant, really. It's amazing. I'm so glad it was all over fairly quickly, and here's hoping it works wonders!

Ellen Seidman said...

Hey. I am hoping that Max's Botox on Monday goes as well as Darsie's did. I only wish they wouldn't have to sedate him, but I think they will. I will see if maybe we can avoid it, somehow—I feel like printing out this post and BRINGING IT!

I really hope the Botox helps Darsie. I'll bet it will.

Anonymous said...

I'm sorry they had such a hard time with the botox but glad that in the end the injections worked out. If it makes you feel any better they gave my daughter 6 injections in her lower back w/out sedation. They are such resilient little beings!

I hope the botox works its magic! =)

Unknown said...

Wow, it’s good to know that everything went well after all those attempts. Botox is really a great help for D. It will increase her range of motion, allowing her to move freely eventually. Anyway, years have passed already. D is growing up fast, and I can see in her picture on your last post that she’s having a great time. I wish it will continue that way. :)

Shavonda Duarte