Tuesday, October 07, 2008

Day One

(one of the few pictures I got of Jack smiling today)

We saw ENT - nothing really to report until after the bronch tomorrow. Our visit with the cardiologist was great. We got checked in and then went to the "Heart Lab" where Jack had an echo and an EKG within 15 minutes of our arrival. We then saw the doctor, who had the results in hand when he came to see Jack. It was a seamless process. The cardiologist is sending us home with an "event monitor" because of these episodes Jack has where he gets really flushed and his heart rate goes up. It's a nifty device that we set on his chest over his heart whenever he has one of these episodes and the thing records his heart rate and wave. We then call a phone number, set the device on the phone and hit the "send" button and the thing sends the report over the phone to the docs here in St. Louis. We keep the monitor for one month and then mail it back to SLCH in a Fed-Ex envelope. How cool is that?

After we finished up with cardiology, we had to meet with the Anesthesiology Nurse Practitioner to get them up to speed on Jack's medical history before tomorrow's procedures. Fortunately, I requested and will be getting the same anesthesiologist who did Jack's spinal fusion surgery, so he knows Jack very well. He especially knows what a difficult stick Jack is.

I have to admit that I had a "teary-eyed" moment sitting in the cardiology clinic waiting room. Being back at SLCH always brings back so many memories -- good and bad. I was thinking how great it was that we are able to see so many specialists all in the same week and, at the same time, it makes me sad that Jack has to have so many specialists in his life. Moments like this always beg the question . . . HOW did I get HERE?

Jack was very serious for most of the day and he just looked at me with these apprehensive eyes. I think he is wondering what is coming next considering his last experience here. Tomorrow will be much tougher having to undergo anesthesia for the bronch. I'm sure he'll be scared wondering what they are going to do with him when he is under this time.

Jack's neurologist called me today because she is the one who ordered the sleep study and it seems we are "rocking the boat" because we have a sleep study scheduled following a procedure requiring anesthesia. This is against the "rules". But, true to form - we like to break the rules :-) Both Jack's neurologist and I think it will be fine, so she convinced them to let us go ahead with the sleep study. We have to check in at 5pm tomorrow for a 7:30 admit to the sleep study lab. I'm inclined to break the rules again. Why do we need to be there 2 1/2 hours early? In any event, I'm hoping to be able to use my computer while I'm spending the night with Jack in the sleep study lab. I'm not planning on sleeping, so I'll need something to help me pass the night away.

Thanks for checking in. Stay tuned ....

(Waiting for his Echo and EKG)


Anonymous said...

Thanks for the update, I have been thinking about you all week. I am glad things are good so far. I will keep Jack in my thoughts and prayers today.
Call when you get a chance.
p.s. give Jack a big hug for me.

Anonymous said...

I am wishing you guys the best of luck. It sounds like all is going well thus far.

Anonymous said...

We're reading the updates and thinking of you all. I got teary eyed at Mayo this summer, we have a long history there and many great docs who are always happy to see Ellie again.
Is it cold enough to see your breath at night?
Take Care,
Your Thursday crew

Dana said...

I have used the computer in the sleep lab. I usually watch DVDs, but that was before we had wireless internet. I so get the memories that flood back. I also understand the how did we get here. Maybe at some pint this week take a moment to celebrate that fact that you get TO LEAVE. You are no longer tied their 24/7 You've come a long way and you and Jack fight it everyday. HOpe all else goes good for you. :)

Anonymous said...

I'm so glad everything seems to be running smoothly with all of Jack's visits and testing. He is going to fly through all of them with flying colors -- if for no other reason then he wants to get the h%$# out of Dodge! (Somehow I'm sure you'll be right behind him heading for the door :)!)There's nothing like a doctor's visit to get our kids to "behave". Try to enjoy some part of this week relaxing with old friends! Hugs to all and let us know when your back!


Sarah said...

I'm glad things are going well. We're also rule breakers. Keturah is having a bronch tomorrow morning and sleep study tomorrow night. They are always paired up like that here. I hope things continue to go well for you guys and that Jack actually has a heart rate event to be recorded. We tried that same device when K was having VERY low HR's. We kept it for a month, and would you know it....no events to record. ;) Good luck on the rest of the appts! Hugs!

Susan said...

That device does sound way cool! I had no idea such a thing was possible.