Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, August 10, 2011

How it went down

I spent the morning with Axel posting the chain of events on Facebook. Since not all of you follow me there, I'm going to repost it all here, along with more specific details I couldn't post on FB!

Axel woke up in this morning and said, "Halo off." But I wasn't sure...was he repeating a phrase or did he REALLY understand what "halo off" means?

6:10 a.m. our buddy Nolan and Axel on the way to the hospital. 


I have to laugh at the rest of the pictures. They're all basically the same just a change of scenery, clothing, and hardward. LOL

My tears for the morning started when I took Axel's halo shirt off. You may remember back that first I had to figure out how to modify his shirts to fit in/around the halo fram. He can't put them on himself because he has to step in and out of them. They don't go on over his head. Then once we pull them up we velcro them through the upright posts. The shirts have to be washed separately because the velcro catches on everything in the machines and wrecks any other clothing in with them. And, he only had three t-shirts and one long-sleeved shirt that I'd modified. My tears about the halo shirt were...I think...related to the change in stress level, not to mention one less hassle in the process that we will never again have to deal with.

We got his gown on. Not even hospital gowns work around the halo frame. Oh how I loathed that thing! One little thing I don't think I've ever told you about the halo frame. Attached to the back of the plastic shell was a wrench that was velcroed in place. A wrench? Yes! It stayed with him AT ALL TIMES!!! If he were to ever choke the wrench is to be used to take the halo off FAST in order to perform the Heimlich maneuver. Getting him dressed and undressed every day was a reminder just how scary the halo can be.

He got a bear. Axel LOVES stuffed animals, and is the only child I've ever had who actually plays with them. He talks to them, cares for them, worries over them if they're sick. This bear is good and squishy too. The bear did end up wearing half of the silly goose medicine since Axel didn't really care for it. LOL He's such a good and tolerant bear, just like his new owner.

When Dr. Samdani came in to talk to us before surgery, I started crying as soon as I saw him. He is the nicest, most compassionate man! He put his arm around me as I tried to collect myself and pretend I wasn't really crying. I was just so overwhelmed. I don't get why I was like this today, and it kind of surprised Dr. S. too I think. LOL "It's not you, it's me." I said. LOL

Our first picture post halo!!!!!  They weighed Axel before giving him the pre-op sedative, and he's gained another 5 lbs since we were here 6 weeks ago. However, I think that when they calculated his anesthesia dosages, they gave him a dose based on his TOTAL weight, including the halo which weighs 7 lbs. He took a LONG time to wake up!! The nurse said, "Well, he can leave any time...if he'd ever wake up!" LOL

For the first time in 3 months I was able to his him without getting impaled by the halo pins. I stroked his hair ALL over. I rubbed his chest and tummy, and when he rolled to his side I rubbed his back. All places he hasn't had anyone touch since May.

I cried some more.

It took him and hour and a half, and he still wasn't able to walk or even sit up at that point. He was just a drunken sailor. This picture was taken down in the orthotists office where we had to go get the brace adjusted. He may look good here, but see how I have him propped against the arm of the chair???? As soon as I snapped the picture he flopped forward. He has ZERO control of his neck, just like a newborn baby, and it will take several weeks for him to regain any control or strength.

From there we had to go to xray for a new set so the hardware that's inside his neck, along with new bone growth, can be evaluated. Getting the xray was interesting since he had no ability to sit up at that point!

Here we are waiting for our cab to come. I wondered how I would get him to walk into the cab, THEN up the steps into my friend Colleen's house. Fortunately the cabby was a driver we've had many times (the same one who bought me one of those huge pretzels last time we were here.) He's very nice, and was very helpful getting Axel into the cab. But Axel had recognized him and was excited to see him so he was more willing to walk with *slightly* less support. LOL


Video of the wobbly boy. At the end when I jumped it was because he was gonna fall over! I don't know if you can see it in the video, but he's staggering when he walks. LOL


And what did he need most? A BATH!!!!!!! While he was busy playing  on the floor with toys I snuck into the bathroom and ran a bubble bath. When I brought him in there he said, "Bahwvhueo bath! Aheksidioah bubbles!!!!" This grin stayed on his face the WHOLE time.

Axel is a very skinny boy, and while he's had some waisting of his upper body (because the halo vest was doing all the work) his shoulders have gained a lot of muscle.



To say he loved his bath is an understatement. He was sensory seeking like crazy, rubbing his belly and shoulders all over the place. It will be a few days before I can give him a much needed hair wash. I have to wait until the holes from the pins are closed and scabbed over.

His restrictions at this point are, "No contact sports (think we're going to need to talk to Angela about this) or anything where he'd really jar his neck." Otherwise he can do anything he feels like doing! Running, jumping, climbing, it's all good!!!!

Thank you all SO MUCH for your love, support and prayers through this.

10 comments:

Stephanie @ Ralphcrew said...

oh gosh, he is such a treasure! thanks for sharing him with us. :) happy halo off day!!

Kathie Brinkman said...

YAHOOOOOOO!!!

Christine said...

Yay! So happy for Axel!

Lori F said...

I love this whole post so much! He looks fantastic and sooooo much happier! The bubble bath was the best I think ;) Thanks for the updates. I don't get to talk to you very much anymore but I keep up with all of you guys. <3

Cindy said...

Way to go, Axel. This is for you!

Sandryte said...

Oh my God - IT'S OVER! What a great job you've done! I am so glad you adopted this little man and saved his life two times!

Best wishes to Axel, good luck through his rehabilitation!

Amy L said...

Ahhhh, Bless him! Love that big smile of his and I am so happy everything went well for your little man!

Laurie said...

tears here!! what a journey...... I could so understand all your emotion that was being released...... sorta like taking the halo off what pulling the cork out of your pent-up emotions.

:) enjoy !!!

Karen said...

Wow. I have tears too. Well done you and him and everyone else. It's just great to be a little part of this. Thank you so much.

Taylor said...

YAAAAYYYY!!! Axel looks GREAT. So happy for him and you! Now it's on to recovery! Give that little "spider monkey" a BIG HUG (and enjoy not getting poked by halo pins) for me!