Wednesday, January 7, 2009

Doctor's, Specialists, and Tigger's Oh My....

Tomorrow we head up to PCMC for appointments for Rhett. Anyone want to take bets as to whether or not I get up there without getting stuck in traffic, loosing a kid, or my mind?

Cause I totally don't see it happening.

When we attempted this adventure last week, it didn't work out to well. I got stuck in traffic for 3 hours due to an accident. Then I didn't get to see my loin cloth wearing cliff divers either.

Heh. Talk about a tragedy.

So tomorrow we try again--the swallow study--not the loin cloth cliff divers, that will have to wait for another day.

We are also doing another hearing test. If Rhett doesn't pass this one then they will do a sedated ABR and hopefully he passes that one. I mean, I really can't imagine him not hearing. He talks so well, and is such a freaking blabber butt.

The thing I hate about going up to PCMC, is that once we get up to that appointment we generally get scheduled for 3 or 4 more appointments with different doctors.

It kind of reminds me of that whole If You Give a Mouse a Cookie book.

~If you take a little boy named Rhett up to the hospital, chances are you are going to have to pack up his whole bedroom to get him there. Once you get up there you will realize that you more than likely forgot your insurance card. After you get checked in you will wait for 2 hours to be seen, and then once you get back to the room they will tell you that there are 5 other doctors or specialists that need to see him asap.

So then you spend the next 3 days making appointments, getting referrals from your Primary Care Dr, and making sure that your insurance covers the procedures. As you call these people you will have to explain your son's whole life history, (which that in itself takes at least a half an hour) to a good 3 or 4 people in the same office. Then they will ask you, "Now why did you need to be seen again?" So you will sigh and repeat everything for the bajillonth time that day.

And so on and so on.

Just this month we have the swallow study, audiology, cardiology, the Down syndrome clinic, and on Monday he goes in for some repairs on his teeth that have rotted out of his head when he had such severe reflux. This will be under general anesthesia....and ya'all know how much I love doing the whole general anesthesia thing.

Then at the end of the month we have another MRI scheduled to check on that pesky colloid cyst in the third ventricle of his brain.

Then we have another sleep study. Where they could decide that if he is still having the apnea like he was before his airway surgery last March, that he may still possibly need a trache. Yes, I get reminded of this every time we visit with the ENT and pulmonologist.

You can bet that all of these appointments are going to lead to more. That's just the way we roll at our nest.

Somewhere in the midst of this we will have to fit in packing up and moving as well.

Betch'ya you're reading this post going, "Damn, I wish my life was as exciting as Pam's."

Well tough. You can't have it.

So there.

Oh, ya'all are probably wondering about the whole Tigger thing in the title huh.

Well I thought I would leave you with a warm fuzzy picture for the day.

Rhett has this Tigger that we got in Disneyland when we went oh gosh, has it really been two years ago?

Anyhow, this is the softest most squishiest little Tigger you have ever laid your beady little eyes on, and Rhett sleeps with it every night.

After all, everyone needs someone to cuddle with.


Izzy 'N Emmy said...

So cute! I hope all goes well at your appt(s).

Jaxsons Fight said...

Don't you love driving all the way up to the house. What do they do at the downs clinic? I've seen it but I never knew what they did there except tell you downs stuff that I already know. See you on Saturday. Lacey and jax

Izzy 'N Emmy said...

By the way, there are some awards over at my place for you. Enjoy!

Jake & Stephanie Ellinger said...

We are having another swallow study done on Monday morning. You are totally right about the scenerio of what happens with these doctors appointments.

Good luck with the apnea. Does Rhett use a bipap or cpap machine? I hope that you don't have to go the trache route! That would totally suck! We did the jaw surgery to avoid the trache and the apnea is still there!

Shari said...

Just reading that made me tired! Phew! I am praying for Rhett and your family as always. Hang in there!

Tiff said...

I know all about all those appointments. That's one reason we moved back home. To be closer to the hospital. Good luck with all the appointments!

Aimee said...

I LOVE the picture of Rhett, so cute!! Hope all went well with the swallow study.... Oh and yes, we need to try and get together soon! When are you moving and do you need any help???

Anonymous said...

Just feel blessed that he is here to take to all this appointments. And good Luck.

My Three Sons said...

Well your day sounds like mine. So no, I don't wish it on my worst enemy.

I hope that the clinics go well and you don't end up with 20 more appointments. We had four appointments this week and ended up with 4 more next week.

Give Rhett and Tigger a great big hug for me.

PS, If I come out to Utah, do you promise to let me sleep???LOL

little.birdy said...

Aw, what a sweet boy! And he's getting so big! I hope you get good reports from the doctors. :)

Wendy's Mom said...

That is an absolutely cute picture if Rhett and Tigger. One thing that worries about that picture is he while he is sleeping he buries his mouth into tigger and could possibly stop breathing. If I remember correctly you have an apnea or Pulse ox is that right? If so at least it will be detected ASAP.
About the sleep study. Does Rhett use a cpap machine? If not have they tried one?
I hope and pray that sweet little guy does not need a trach, it would be hard on him to get one now since he loves to talk so much. i am praying that he does not need it. If you have pulse ox or apnea machine do they ever go off at night and if yes how many time? You can email me if you would like.


momtojesse said...

He looks so cute all curled up with Tigger. Good luck with all the appointments.

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