Thursday, August 24, 2006

On The Road Again

For any of you considering driving your ventilator dependent, non-mobile, very heavy and very tall child, 3000 miles for spinal fusion surgery, I highly recommend that you .... RECONSIDER! Okay, so not one of you fits into that particular category. If you all could have seen us leaving St. Louis this morning - what a sight. Well, in fact you can see (pictures included :-) We clearly weren't in our right minds when we agreed to do this.

Since Jack must be in his body jacket and cannot sit up, he could not travel in his customary "throne" (the captain's chair behind the driver's seat and with a perfect view of the TV above). Poor Jack had to be in his body jacket, with a harness strapped around him on a mattress on the floor of the van, tied down with the tie downs for his wheelchair. Once in this position, he wasn't going anywhere .... for 9 long hours! The van is so full of crap that I couldn't even recline my seat back. I figured if Jack couldn't move, I'd see how long I could go in one position before I lost it. I only lasted an hour and I was hurting. Jack absolutely humbles me with his tolerance and incredible spirit.

Since Jack has to be so confined, plus we have the added challenges of having to give him Vancomycin over an hour via his broviac, doing wound care and having to watch for additional pressure sores, we decided not to push it to get home asap. So, we are in Oklahoma City tonight, Albuquerque tomorrow night and home by Saturday night. Jack was so happy to get out of the car tonight. What an entrance we made into the Marriott! Once Jack figured out we were not, in fact, home ... the tears started flowing. He so badly wants to get home. But, we post-haste set up his DVD player and put in a movie and he is very content right now.

What a challenge this last month has been, but certainly for no one more so than Jack himself. He is such a trooper. And if he can "keep on keeping on", so can Mark and I. Next update .... Albuquerque. Thanks for checking in.

1. Jack watching his movie from a different angle (from the floor).
2. Peggy saying good-bye to her precious Jack :-(
3. Me and Jack right before we hit the road. (not sure why I'm smiling).
4. Jack taking his "position" on the floor of the van.
5. My friend Kristy (another trach board mom) and her little boy Nathan who came by to visit last night.


Julie worthington said...


So glad you are finally on the way home, hope the journey is not too difficult. Probably a good idea not to try and make it all in one trip. Will be thinking of you Saturday, but won't be able to check in again as we are going on holiday for a week. Your car looks like an ambulance!! - Are you sure you didn't steal one (hehe).

Have a safe journey home, Jack is such a beautiful, smart, brave little boy.


Anonymous said...

Julie said it best-you do have a beautiful, smart, brave little boy-braver than any adult I know. His mom is o.k. too!! Love you lots and I can't wait to hear that you are HOME.


Anonymous said...

Jack you are AWESOME buddy. Have a safe trip home. Ann you are pretty AWESOME too.


Anonymous said...

you guys amaze me, such stamina and endurance!!!
glad you are on your way home, hope you see some sights along the way:)
xo christina

Melisande said...

Wowwy, wow, wow! On the road. I bet Jack will cry when he gets home too! What a relief that will be to you all!

Anonymous said...


I so like pic #1. Jack looks so good. I hope he can be home soon, he does have endured alot. I certainly hope that the results of the surgery will yield benefits for Jack's body in the long run. Take it easy coming back. And as always, my thoughts and prayers are with you.


Anonymous said...

Hi Ann! Where in Oklahoma City are you staying? Id love to come say Hi! Let me know, ok? You can call at 405.703.3757 Deb (cariaad)

Anonymous said...

Yeaaah! Itll be good to know you are back in phoenix, safe and sound!
Drive Safe!

Kerry said...

Yay! You should be home by now? I sure hope so. Safe and resting already!

Love you guys!


bridget said...

Hi Ann:

Welcome home to you, Jack and Mark. I have been thinking of you and praying for you. Jack is an amazing child, so brave! I know he must get his resilence from you and Mark.

All the best,