It is true, some doctors are irritating.

I spent the latter half of Friday taking KayTar to her endocrine appointment and acquiring medical records (that the hospital failed to send) for the new doctor she is seeing. The endocrine appointment was frustrating and unnecessary. Endocrine appointments always seem like a bit of a waste now, because KayTar carries a ketotic hypoglycemia diagnosis and they are done searching for an underlying cause. It is basically a check in, which I don't mind, but the attending who came in at the tail end of the appointment was really aggravating. She had never seen KayTar before and clearly had not read her medical records. She came in, observed a normal looking kid with a g-button, questioned me about why she has a g-button (because she has a feeding disorder and her other physicians and I felt it was the best route to ensure she receives adequate nutrition, perhaps?), told me that she probably has ketotic hypoglycemia because of the g-button (she blamed it on dumping, but I don't buy that for a second with KayTar's history, she was becoming ketotic and hypoglycemic before she ever had the tube, we just didn't realize it until we took nutritional deficiencies out the equation with the g-button), and implied that we needed to try to get rid of the button so KayTar's issues would go away. Never mind that the g-button is the lynch pin of this whole "healthy kid" thing KayTar has going on these days. After trying to briefly explain KayTar's history (hearing loss, brain lesions, history of global developmental delays, feeding disorder, ect.) I mentioned that she was seeing a neurometabolic specialist who thinks that KayTar has an underlying metabolic disorder, possibly mitochondrial disease, and she stared at me for a prolonged amount of time...you know, an AWKWARD amount of staring time...then said, "Well, she looks fine to me." Thank you, Dr. I'veNeverMetYouBefore! Clearly, you are more in touch with my daughter's complex case than the other 8 doctors she is followed by! As an endocrinologist, you certainly understand my daughter's GI functioning better than her GI doctor. As a doctor who has been in a room with her for 3 minutes, you definitely understand the complexities of her case more than her pediatrician of 5 years does! Oy. I know I want to be a doctor, but this is the kind of doctor I DON'T want to be...the kind that makes uninformed judgments based on superficial interactions and doesn't listen to the patient/family. Truthfully, it doesn't matter. We all agreed that the plan is to keep doing what we've been doing, since KayTar is doing very well with it, but it was just irritating that she felt that she needed to give commentary on issues that she has a limited amount of information about and are not in her realm of expertise.

I also went by diagnostic imaging to pick up a CD of KayTar's MRIs for her new doctor and they had accidentally burned a second copy...so now I'm the happy owner of my own copy of KayTar's MRIs! Doesn't she have the cutest little brain ever?

Here she is, as an alien in a scrub mask...

And this is what it looks like when KayTar's brain feels sad...

(see its cute little frowny face?)

Yes, I had way too much fun looking at her images on Friday night. I don't know whether to blame it on the premed thing or the parent of a medically-complex child thing...but yeah, I spent my Friday night scrutinizing MRI images. Fun times. ;)

Oh, that KayTar.

Yesterday was supposed to be KayTar's hospital follow-up appointment with endocrinology, however, I had midterms...so I called 3 separate times to cancel it and reschedule. I attempted to get in touch with a Real Person, but it is increasingly more difficult to speak with a real person in the hospital clinics, so I settled for leaving a message each time. After midterms yesterday, I came home long enough to have lunch before heading to the kids' school to help with Book Fair. The phone rang and it was the endocrinologist. She said, "KayTar was supposed to have a follow-up appointment today, is everything okay?" I explained I had tried to cancel it several times, but evidently no one had been checking messages. Halfway into our phone conversation, I got a call on the other line from the scheduler, she had FINALLY check her messages, just a tiny bit too late. It all worked out well, though, because we did the follow-up over the phone and it saved me about 3 hours.

Long story short, 4-5 out of 20 items on KayTar acylcarnitine profile were abnormal and she had a small elevation of her free fatty acids. For those of you who are not native speakers of Medicalese, this indicates that KayTar probably has an underlying metabolic condition. Based on these specific labs, it is likely to be a fatty acid oxidation disorder, but no one knows at this point. In fact, all of this may lead nowhere in the end...as we've found to be the case more often than not. Her lab results received an automatic flagging in the hospital system and the metabolic clinic was alerted, so we'll be following up with them as well. I'm glad they did get a bit of a lead from that horrible, horrible study, though...it makes me feel just a little less terrible about all of it.

Regardless of how the results turn out in the long run, KayTar is doing very well now that we have added cornstarch to her morning feed. All of her numbers have been in the 80-90 range! She was sick recently and although she did get ketotic, she never became hypoglycemic. We're pretty pleased with how well it is working!

Enough medical talk, though. It has been a while since I've done a Quotable KayTar post, so I'd like to leave you with a few of my favorite recent quotes:

"Mrs. M's (the librarian at school) lipgloss makes her lips look so plump! She's like a hot lady!"

At cub scouts on Monday, the scout leader started to do announcements and KayTar piped up, loudly, "Yadda, yadda, yadda..." Josh almost DIED from embarrassment.

When telling my mom that her friends at school don't believe that she got to go to NYC for a photo shoot and be in a magazine, "You know, everyone is SO jealous of me."

While we were in the hospital she said, "I don't really want my skin to get darker, so I'm not going to eat any melons." I asked, "Okay, but why aren't you going to eat melons?" And she said, "Because of the MELANIN!" (she knows melanin is what makes skin darker, and she assumed it came from melons, LOL!)

Last week, KayTar got a conduct mark for kissing a boy in PE. When I asked her why she did it, she said, "Because I was looking for a little romance!" This one takes the cake.

Glad that is over!

Yesterday was a much better day. Shortly after I posted, they rechecked her glucose and it was up to 103! Woohoo! She slept until 10:30 or so, and when she woke up she was back to her happy, chatty self. It was awesome. She tolerated all of her morning feeds, a total of 2 ounces of Pedialyte and 6 ounces of Pediasure. She snacked on a breakfast sausage patty while we watched cartoons together. It was such a relief.

Results from her critical labs started to come in, and all of the ones they had yesterday were normal, except for her cortisol, which was 7 when it should have been 18. Because of this, they ordered an ACTH stimulation test so we had to hang around longer than expected. It was fine, though, because KayTar was feeling so much better, and the hospital is much easier to tolerate if your kid is happy and well. The results of this ACTH stimulation test were normal, just like the one she had done in June. It sounded like the doctors were discounting the considerably low cortisol as being important because of the results of the ACTH stimulation test, but I disagree with that. If her cortisol was low when she her body was under stress and hypoglycemic, I don't really think it should be dismissed as unimportant. When she is healthy and not expending large amounts of energy, she is fine (as proven by the fact it took her 31 hours to become hypoglycemic at rest), she has problems when her body is stressed by increased metabolic demand or illnesses and her body doesn't rise to the occasion and appropriately mobilize resources. It seems related to me...of course, I'm not an endocrinologist, so who knows. (If you ARE an endocrinologist and you are reading this and can explain it satisfactorily, feel free to do so. If it unrelated, I'd really like to understand why that is. The doctors were not doing a good job of explaining it away.)

There are our discharge orders:

1. Add 1 tbsp of cornstarch to morning g-tube feed.
2. Check blood glucose in morning and prior to lunch feed for 4-6, can discontinue checks when glucose is consistently above 80.
3. If glucose is less than 60 for 2 checks, call emergency/go to ER.

#1 is awesome. Cornstarch is a very complex carbohydrate, so it is suppose to help get her to lunch without her glucose dropping like it has been.

#2 is no problem, we don't mind glucose checks...except, she RARELY has numbers above 80, which I don't think they full understand. Since school began, she's only had 5 numbers over 80. I'd like to make sure they know her numbers tend to stay in the 60s and 70s for the most part.

#3 is a little ridiculous. She'd have been in the ER twice in the last couple of weeks based on this, and we've been able to correct her deficit at home rather easily. It seems unnecessary to take her in for that every time. Of course, if we can't correct the deficit, we'd take her in.

I have to call them on Monday to get our follow-up appointment time, so I'll get some clarification then hopefully. That's that. We're home now and so happy to be here!

Slow Torture: A narrative told through Facebook status updates.

Thursday 5:05pm

Finally got the call. Quick dinner and then we're off!

Thursday 6:59pm

Settled in and crafting

Thursday 7:46pm

Waiting anxiously to see if KayTar will win the radio contest...she has prepared confetti to throw just in case she does.

Thursday 9:07pm

Watching The Little Mermaid with my little chickadee.

Thursday 10:36pm

KayTar is out for the night, but her alarms keep going off. It's not looking like a peaceful night is in store between that and the frequent glucose/vitals checks.

Thursday 11:42pm

The nurse lowered the respiratory rate alarm to 10 so it will stop ringing every 30 seconds.

Friday 12:07am

So now that they fixed the respiratory alarm by lowering it, now the ECG is all "Bradycardia!" Lots of ringing around here tonight.

Friday 11am

She started fussing for a snack (14 hours in) and the hospital ice chips came to the rescue. :) She said it is the most refreshing snack ever.

Friday 12pm

Happy little patient

 Friday 4pm

We have reached misery...I rocked her to sleep, but I don't think it will last long.

Friday 6pm

She's still asleep, thank goodness, but it is looking like we'll be here another night.

Friday 10pm

Her glucose is only 58 at the 25 hour mark! She can get down to 58 in like 4 hours on a school day! This is going to be a long night of hourly glucose checks.

Saturday 12am

Gah. Her glucose has now gone up to 63. I'm starting to think it will never drop below 50. She's on hourly glucose checks until it does and only one of us sleeps through those...and it sure isn't me!

Saturday 3am

Glucose was 46, so they drew labs...next up the shot of glucagon and glucose testing every 15 minutes for an hour.

Saturday 4am

She can eat now and in typical KayTar fashion, she isn't. She's been vomiting, though, so that might have something to do with it.

Saturday 5am

Vomiting in spite of Zofran, so they're starting dextrose in her line. Seems like she was mostly fine (but unhappy) until the fasting was over!

Saturday 8:30am

She has tolerated 2 ounces of Pedialyte and 2 ounces of Pediasure this morning per her g-button (it hasn't come back up yet), but she isn't maintaining her glucose like they want, so they are starting her on D5 and we'll try more Pediasure in a bit. She has to be able to maintain a glucose of 70+ to be released.

****

I'll have more to say about it, I'm sure...but let me say this for now...WORST TEST EVER. She's had all sort of tests and procedures, from labs to LPs to surgeries, and I think this takes the cake. It was so hard on her. She was so sad/mad/pitiful after she hit her breaking point and there was still so much left after that. So many, many, many needle pokes. So much waiting. So much crying. Ugh.