Friday, March 14, 2008

Our Neurosurgery Appointment......

So I have been kind of dragging my feet with this post. After all the fun we had on Wednesday, I was kind of enjoying being in that state of euphoria for a bit.

But reality is calling me back and I thought I would update on some things that are happening here.

We saw the Neurosurgeon Wednesday morning before Chloee's Makeover. Overall I am pleased with how things went. Yes, Rhett dose indeed have a tethered spinal cord, and he will need surgery for it. But the good news is that it is not so severe at this point that we have to have surgeries back to back.

So here is our game plan:

One week from today we still plan on the airway surgery. We want to give him a good 6 to 8 weeks to heal from this, and for the pressures in his lungs to possibly go down a little bit. I am getting quite anxious that we have no idea how this surgery is going to go. He will do one of three things. He will either get much better, stay the same, or get much worse. If he stays the same or gets worse he will be trached.

We are planning on him getting much better.......I won't let myself go anywhere else. Have faith and focus on the good right?

He is a little trooper, and we all know that he has fight in him like no other, so the way I figure it, only good things can come out of this.

So we have an appointment June 4th to meet with Neurosurgery again and set a surgery date. The reason we are able to wait for so long, is that he just went through a growth spurt, and the more they grow the more that cord pulls down and causes damage. So he is not expected to have another growth spurt for another 5 to 6 months. This means that we can wait until his lungs, heart, and airway are looking a little better before going through with the spinal surgery.

Of course if he shows any more signs of gross motor issues, we will do the surgery right away. It's just one of those things that we are going to try to prolong as much as possible to get him in the best of health that he can be in before a surgery like this.

Now here are a few other things that we are dealing with.

Dakota, our oldest has a very large lump on his back that is connected with a mole. It is discolored raised up about the height of a pencil eraser, and is about as big around as a dime. You know where I am going with this right?

It is possible that he may have skin cancer. We are going in on Monday to have some biopsies done. He is freaking out, as he will have stitches, and this is something totally new to him. Any of you that have children on the autism spectrum know what we are going through with this. He cannot comprehend that he will be okay. This is all very traumatizing for him. It's all he can talk about, and is obsessing about it. We are just trying to reassure him that things will be fine.

One other thing, if anyone knows anything about severe bruising OTHER than cancer, (his CBC came back fine) he bruises like crazy. He came back from a scouting trip where they went snow shoeing and X-country skiing and he looked like he had been in a fight with 20 kids. It was just from him falling and his arms getting hit by branches from trees, but seriously we counted over 25 bruises on his arms, legs, and sides. They weren't just small bruises either, they were huge, and deep dark colors. He gets over them relatively quickly, but all you have to do is touch him, and he gets bruising like this. It started around the time he was 5 and seems to get worse as time progresses.

Chloee is sick right now, she has some intestinal bug, quite honestly it smells like rotavirus, and I am really crossing my fingers that I am just being paranoid.

Hunter has had Athletes foot, but has some sores that are infected. We are working on getting that under control, and I just went and spent 50.00 that we didn't have on Sketchers shoes that are well ventilated, and have air that go through them. His feet smell really bad.

Other than that things are good. Andy's Birthday is on Monday, and we are having a party for him tomorrow night. We are all looking forward to that. He is going to be 31.........boy is he getting old!!!! I keep reminding him that I am still in my 20's until November.

He responds to that by telling me to just wait until I turn 40, he's going to trade me in for to 20 year olds.......Okay, I deserved that one!!

Please keep our little friends in your prayers who are struggling right now, or who have had recent surgeries. Just off of the top of my head here are a few that we keep in our prayers every day. Elliot, Chlesea, Parker, Aiden, Kennedy, Karly, Tyler, Kaidence, Noah, Thatcher, Alex, Alyvia, Kaden and Ava, and of course Sweet Angel Gabi's Mommy and Daddy and new baby Kinsley on the way!!


Kaden and Ava's mommy said... I caught up on the last couple of days. It looks like Chloee had an awesome day. She looked so adorable. I can not wait to do girly things like that with Ava. I am so glad that she was able to enjoy it with the two of you.

Sounds like you have a lot on your plate right now. I pray that things start getting better and go in your favor. Hang in there and know that we are here for you. Take care.

Love, Amy

Niksmom said...

Oh. My. You do have an overflowing plate, my dear! I will continue to keep you all in my prayers.

On the bruising and such...has D ever been tested for any autoimmune diseases or immunodeficiencies? Or, for that matter —and way simpler/less scary —has he had a complete metqabolic panel and nutritioal analysis done? It may be something as simple as he's not absorbing enough of certain nutrients (Vit B12, K, C, folic acid). I would definitely get it checked out though. May also be something to do with kidneys if it's chronic. I am NOT trying to scare you...just telling you the things my nursing student husband mentioned when I asked him!

I hope Chloee and Hunter both feel better from their respective illness/icky feet! (wink)

Sending lots of love.

Mommy to those Special Ks said...

Praying always, especially for Dakota! I wish I had answers for you! Thanks for keeping Kennedy in your prayers, too!

Michelle said...

Holy moley you've got enough going on lately! You're in our thoughts!

I feel for Dakota; I can only imagine how stressed out he is. Karly gets the same way. I think he & Karly would get along really well if they ever met up!

Hope you have a good weekend!

Christina said...

Wow. I hope YOU are doing OK.

Don't know much about most of what you wrote about, but the feet ;-) Try to avoid cotton socks, kids that sweat alot should ultimately use wool or synthet socks. I know, sounds crazs, but here is why. The cotton does not soak up the sewat as well so it makes the socks wet and than you have moist and usually you get athelets foot or other fungus type things.

Hope the gang is feeling better soon!

Anonymous said...

That is all too much! You are an amazing mom. I am so proud of you staying so strong for your children. I hope that you are able to get some resting time in for yourself. As always hugs and prayers.

Damama T said...

wow! I don't know how you are still sane. And then you take the time and effort to ask us to remember others who are also struggling?? wow. You are an amazing woman.

Childlife said...

"Other than that, things are good.."

I read that line and just shook my head... you poor kid! I'm praying for all of you guys, that things will just settle down and give you some room to breathe. Hang in there, Pam... you are one awesome Mommy... you DO know that, don't you?

Big hugs and lots of prayers for you this week!

The Bryant Family said...

We just got over the tummy flu and yes it smells like rota virus. We had Tucker tested though and it came back negative. It is a nasty thing and ALL of our family shared it. Sounds like your plate is full once again. Hang in there. We are thinking of you. I have Rhett in my prayers with so many things ahead. He is just sooooo darn cute!!!