Friday, November 9, 2007

Ah...The Blissful Joys of Square One


Okay. That was neat.

We just returned from a trip to the doctor's office. I've been meaning to get Sophie established with a new pediatrician for quite awhile now. However, with the move and all the nifty hectic details that come with relocating to a new part of the country, I haven't yet tended to everything on my To Do List.

Since moving two and a half months ago, Sophie has had non-stop congestion. Along with sneezing and coughing and having sad little dark circles under her eyes. Her symptoms appeared almost immediately after we relocated and have been pretty persistent and allergy-like. ...Which makes sense. We moved from the dry, arid desert of New Mexico to humid, lush, green Arkansas. With the exception of the few vacations here during the summer and at Christmastime, Sophie really hasn't ever been around grass and trees and big, bushy plant life. Especially not for any extended periods of time. And from what I can tell, her poor little body isn't making the adjustment very easily.

So off to the doctor we went - to see if there was anything he could suggest to help alleviate her symptoms.

The visit started off okay. There was the normal, "What are you here for?" type questioning. Along with the usual "Look here. Poke there..." examination that usually follows such questions. We were doing fine. Discussing allergies and congestion. Looking up noses and down throats. Listening to lungs and checking reflexes. Talking 'bout curly hair and cuteness. Everything was going along just smooth and dandy.

Until the stomach poking part of the exam. At that point there was a pause, and I knew what was coming next. I knew it. The dreaded inquiry: "So, how is her diet? I'm guessing she's a pretty good eater, huh?"

[Vrrrrrrpp. Screech to a halt.] Ah. Yes. Here we go.

I said, "Well, since you have us in a fifteen minute appointment slot, I'm pretty sure you don't want me to answer that question right now."

Dr. L: "What do you mean?"

Me: "Well, the Lightning Round summarized version is that she's had severe reflux since birth. Until recently she has vomited every day, multiple times a day. She also has problems with dysphagia, delayed gastric emptying, and a crazy sensitive gag reflex. And until the past month or so, she has never eaten a single solid anything food-wise. As a result, she has been syringe-fed since weaning herself from sleep-feeding at eleven months. It's slowly getting a little better. But her diet is still very abnormal for a three year old."

Dr. L: "What do you mean? Syringe fed? ...Fed with a syringe? Fed what?"

Me: "Formula. And all of her free fluids - juice, water, pedialyte. And a multi-vitamin."

Dr. L (unable to hide his confusion): "Okay. Yeah. But what does she eat?"

Me: "Well. She doesn't really eat. Not much, anyway. She chews. But then she spits everything back out in a pulverized clump. She is just starting to learn to swallow some things without gagging: a few bites of yogurt, some cheese, bread and crackers, a little meat. The meat is a big deal; she never has had the oral motor control to handle meat before. I feel like we're really making big progress. But her daily food intake is still only equivalent to a few tablespoons."

Dr. L (his This-Woman-Is-Completely-Loco tone becoming ever-more obvious): "Uh. Okay. But she looks good. I mean, except for the obvious snot thing, she looks fine. Children with severe reflux, feeding aversions, and swallowing issues are almost always lethargic and emaciated. They're pale and thin. (In case I didn't know what emaciated meant.) They are also often severely developmentally delayed. They are on..."

Me (interrupting him): "...G-tubes. I know. And they usually have Nissen fundoplications to attempt to control the vomiting."

He stared at me.

Me: "Sophie wasn't a candidate for the Nissen due to the forceful nature of her retching and vomiting. And we wanted to avoid the g-tube, if possible, to keep her from becoming totally non-oral. Plus, she's crazy active and grabby. A g-tube would be a mess."

Dr. L: "But she looks so normal. Healthy. Is she working daily with a feeding therapist and an OT or SLP?"

Me: "She has seen various therapists over the years. Without any success. The therapists in NM admittedly hadn't really encountered a child with Sophie's issues. They were familiar with children who had anatomical issues preventing them from being able to eat. But they were not very knowledgeable regarding how to help Sophie, who just never wanted to eat - who has basically refused to eat since birth. For that reason, they've all pretty much just told me to keep doing what I've been doing. So, no, she isn't currently working with a therapist."

(More staring...)

Me: "I'm a stay-at-home mom. I work with her. ...Oh, and God. He works with her. He's miraculously kept her healthy, somewhat chubby, in fact, despite everything."

(More silence and staring.)

Dr. L (slowly this time, so that I would comprehend what he was saying): "M'am, don't take this the wrong way, but children with gastric and feeding issues to the degree I think you're describing do not look like Sophie. They just don't."

Ah. Neat. A trip down Memory Lane. Perhaps I should locate the Projectile Vomit Video Tape Collection.

I could feel the vein on my forehead starting to pop out a teeny bit. That's when I suggested that I have her NM pediatrician and GI mail her records to his office. I explained that I had tried to do that prior to moving, so he would have them when we made an appointment. But, I explained, their office policy is to charge 75 cents per page, which with Sophie's geriatically thick record, would bankrupt me. I told him I would fill out a records release form and have everything sent directly to him.

He all but clapped his hands in GOODY! fashion and said he would look forward to reviewing her history. Translation: "You, my dear, are a total Kook. The records from the medical professionals will prove such."

******

Holy sweet moly. I had forgotten how "fun" it was to see a new doctor (insert as many quotation marks as necessary to convey the totally NOT FUN sarcasm I'm intending). Square One is never really a pleasant place to be where Sophie is concerned, in any matter. But Square One is a special kind of exhausting in the presence of a doctor unfamiliar with our sweet little pod and her oh so nifty little medical quirks. Quirks? Can boycotting eating and launching formula out one's nose be considered a quirk? Hmm. ...Probably not. Regardless. Square One kind of stinks.


The good news is we left the doctor's office armed with a prescription for an ear infection. (The bad news is it's an antibiotic, which will most likely have to be administered in injection form on Monday based on Soph's usual reaction to oral meds). He also gave her a prescription for some nasal spray. And a granular allergy medication that is supposed to be "sprinkled on food and eaten immediately."

I asked if it could be sprinkled in formula and syringed.

Dr. L: "Well... I guess. But it would probably be better to just put it on her food."

Okay. Check! Glad all the parts about how Sophie doesn't really eat food got through with such fantastic clarity. CALGON.

____________

P.S If you made it to the end of this post without drifting into a coma, you will be awarded a Medal of Amazingness. Whoops. Apologies for the spectacularly long-windedness. I try not to do it often, but it seems, perhaps, I needed to vent.

14 comments:

Becky said...

Kudos to you Kristy!!
You have worked so diligently with Sophie and done such a super job that you even fouled the doctor :)
I can't wait til he gets her records and he is even MORE shocked at how great she is doing inspite of everything.

Kristy said...

Thanks, Aunt Beck. I appreciate it.

You, by the way, win the Medal of Amazingness for being the first person to make it through one WHOPPER of a wordy post.

Congratulate yourself and wear your award proudly. =)

Kristen said...

It ceases to amaze me how an MD would actually think you could even imagine up a medical history like that! I just applaud you for "telling it like it is"...I always cringe when it is time to tell "The Story". YOu have done an amazing job taking care of Sophie and her health shows :)

Hi, Kristy here. said...

Thanks, buddy!

And likewise, high-five to you as well. You have done an amazing job with Fia. She is SUCH the picture of health, it's hard to believe she ever struggled with reflux and feeding issues.

Kristie said...

I cannot believe that he questioned you, he is going to be im major shock when he does get her records. You have done a awesome job taking care of her and you are the best mommy ever. It is only because of you that she is thriving like she is!

Kristy said...

Kristie,

Thanks!!

How is Preston doing these days?

sarah p said...

oh my word...you are such a good mommy. i hope the doc realizes who he's dealing with. (meaning YOU) soon he'll know what's up...hang in there!

Anonymous said...

K:

I'm truly sorry you had a "red vein event" with Dr. L. I don't think there was any way to really prepare him for the explanation. I think he's just about seen it all and just can't believe how well she's doing after hearing all of that! But, it also reinforces what a great job you've been doing with Sophie and how well she's doing despite all the craziness she's gone through. I'm sure Dr. L will express his true amazement once he reads her records. You've definately given him a good story to tell his pediatrican buddies! I can hear it now...she's just so healthy looking and so darn cute to have this!!!

Heather

Kristy said...

Heather,

Thanks for the encouragement. I agree with you, I'm sure he just can't match up in his brain what I'm telling him and what he sees in Sophie.

It ALWAYS happens with doctors. His reaction wasn't unique. I had to produce video evidence and testimony from my dad before our ABQ pediatrician believed me. (And I grew to absolutely LOVE him.) Dad says, sadly, that's just the way it works in medicine. A physician is trained to believe what they observe over what they hear.

Anyway. I'm sure it will all be fine when the records arrive.

Thanks again! =)

Kathy said...

Kristy, I love reading your "vents" - It IS hard to believe your story cause she is so darn healthy...AND cute!!! I would love to be a fly on the wall when he reads her records. When is the next visit scheduled with Dr. L?? Should be fun.
So sorry we missed you at your parents - we'll catch you next time!

Bob said...

Just curious, but how old was this doctor?

Kristy said...

I'd say late fifties, maybe early sixties. Hard to tell. I think he's the founder of that clinic, so he could actually be even older.

But again, not really meaning to pick on him. His reaction was VERY typical.

Unless Sophie does some of her "antics" directly in front of them, or I provide video proof, it's hard to get medical people to understand what we deal with in Sophie. ...And I guess I understand that, she does look healthy. That's been the frustrating part of all of this. It's not just that Sophie has to go through what she goes through, it's that it's so freaking hard to get the help she needs because of how she looks. With the exception of the medication the doctors have prescribed, we've pretty much been on our own in figuring out how to help her. But we're around her the most; we know her best.

I guess Dr. L will have a jolly good read when the records arrive, huh? Of course, it's going to take him an ETERNITY to read her chart. It's seriously probably three inches thick.

Traci said...

oh my word!! i didn't realize the extent of Sophie's reflux until that post. I almost threw up just reading the word vomit.

Your the most amazing person I have ever met!!!

And when I say "ever met"... you know what I mean. :)

Kennedy and my Sophie get allergies as soon as we cross the Oklahoma border.... so I know what your going through. no fun. Hope she feels better soon.

Anonymous said...

Ah! So I am not the only one who gets treated like that at the Drs. office. My daughter has some of the same issues just not to that extent. The when we have to go to a new dr, they generally look at me like I am crazy by the time I get done giving my spill.
Bless you! If it is alright I would like to e-mail you with some questions. Maybe you would have some ideas to help my 7 month old.

Thanks,
Casey

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