Friday, October 30, 2009

Change of plans

and not by me.

(Revisited)

I called our satellite hospital this morning to verify Dylan's endoscopy procedure. You know, the procedure that I have talked about incessantly for the past, oh, couple of months? The one that I was hoping would help us understand the cause of his constant vomiting? The one that was scheduled by our GI doctor for November4th? Yes, that one. The secretary collected my name and number and said that a nurse would call me back to speak with me about all of the details.

10 minutes later:

Me: Hello?
Nurse: Is this Dylan's mother?
Me: Yes.
Nurse: Sooo, he has Down syndrome?
Me: Er. Yes?
Nurse: Oh. Yeah. Um, he can't have his endoscopy done here, then.
Me: Excuse me? Why not?
Nurse: We do not do procedures that require anesthesia on any Down patients.
Me: Excuse me? Why not?
Nurse: Because we are a free standing building and are not connected to any hospital. We cannot take the risk, you see. You will have to reschedule it down at Children's.
Me: ...............

So. After throwing the phone across the room and crying tears of defeat and frustration, I picked it (and myself) back up and called just about every medical person we are involved with who I thought may be able to help us expedite the rescheduling process. Unfortunately, I have not been very successful as we are currently looking at the end of November/beginning of December for the next available endoscopy appointment at Children's.

Un-freaking-believable.

You know, I really do try to believe that things happen for a reason. Seriously, I do. So right now, I'm just hoping that there is a reason for all this. And in the mean time, where oh where have I left my last beer?

Kidding.

Now, I am wondering if you are wondering why I am suddenly quite eager about getting the endoscopy done, when back in July I actually had the opportunity and declined? My answer to that is that his reflux has gotten considerably worse since then. Actually, back then, the endoscopy was scheduled to check for a laryngeal cleft. Vomiting wasn't even a concern a few months ago. So, because his struggles with reflux have gotten so much worse and because he has begun to lose weight, I now feel that an endoscopy is justified.

Am I wondering if perhaps they will find nothing and we will be left with the belief that this is all a low tone issue? Yes. Am I kicking myself (hard!) that I didn't get the endoscopy done when I had the chance. Indeed.

Ah. Onward we go.

9 comments:

Jessica said...

Arrggghh! How frustrating! I hope you can get in soon.

The Lehnick Family said...

Laurie...I am soooo sorry, talk about disappointing! I hope there is a very good reason for this! I will still be saying our prayers for you and Dylan.

Sharon said...

Hey Laurie - Have you talked to Angela at the DS Clinic?? I know a few people who have said that she can really help with getting appointments quickly at Children's. It probably is better to have things done at Children's when you can since they have more experience with kids with Down syndrome....so in the long run, it may be a blessing that you were referred there (although I totally understand that doesn't make it any less frustrating). Thinking of you and hoping you can get an ealier appointment.

Hector and Jennifer Varanini Sanchez said...

Oh this is sooooo frustrating Laurie!!! I have to think that there might be some other tests that you might be able to do in the meantime so that you feel like you are moving forward??? How about getting him screened for food allergies and for celiac disease...just to do something. Or maybe you've done that already?

Adrienne said...

Wow, what's the risk?? And did she really say "for any Down patient"??? Sorry that you are having such a rough time with this but maybe it is better that you go to a bigger hospital for it just hope you can get in there soon!

Amanda said...

Ugh. I am so sorry. I hope you/he can get this done SOON.

Anonymous said...

sorry to hear the news ,but like Sharon said it is better to wait and get it done in childrens hosp.Laurie you must be used to that ol runaround.All will come together soon.
God Bless

Heidi said...

honest to shit, how frustrating! i'd call the gi doc back and have his staff reschedule for next week at the hosp. perhaps they have strings they can pull?

good grief though. . .

h

Jackie said...

How disappointing. I know it's easier said than done, but you shouldn't be kicking your self about missing the first one. At the time you made the best decision for Dylan with the information you had. Now that he is spitting up constantly and you're worried about his weight, you again made the best decision for Dylan by trying to get this test done. Now you just need the world to pull their head out of their @$$; I mean really if they can't do the procedure there because their not attached to a hospital, it should have been picked up a lot sooner and rebooked elsewhere.