Report Card Time!

BubTar got all A's, as usual. His teacher said, "BubTar is a joy to teach this year. He has so much knowledge to share with the class. Congratulations on making the All A Honor Roll this first nine weeks!"

KayTar got all S's (for satisfactory, the other option is a U for unsatisfactory) and her teacher said, "KayTar is very intelligent. She provides comic relief and shares many interesting facts with the class! I really enjoy having her in class this year. Thanks for all your help at home."


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We've got a busy weekend ahead. Today, I am writing a 5-7 page literature review on speech and communication in autism spectrum disorders, I took a lunch break to go on a quick date with Josh, now I'm off to pick KayTar up and take her to PT and a pediatrician's visit for her prolonged post-viral cough and wheezing. Tomorrow, BubTar has his last baseball game of the season, then KayTar will go to dance while he goes to martial arts, then we'll meet up for a birthday party at Chuck E. Cheese, then head to a Fall Festival before dropping the kids off at my parents' house and coming home to host game night. Sunday, we are hosting a Halloween party for the cub scouts and attending another Fall Festival, plus trick or treating...as well as finishing up this paper and completing a chapter of biopsych. Whew, I think I'm tired already!

Blurg.

This weekend I worked my butt off studying for the organic midterm. I probably logged 24 hours worth of study time. Guess what? I FAILED. I haven't seen my grade yet, but based on the amount of guessing I did...I failed. It was like freaking GREEK. I just cannot get NMR spectroscopy to click and that was the majority of the test. I can look at an NMR spectra and determine the various groups, but organizing them into the correct molecule just isn't happening. I'm hoping the rest of the class did as poorly as they think they did (I didn't talk to a single person who thought they had passed, even the guy who loves this stuff and wants to work as a chemist.) and there will be a major curve...otherwise, I'm screwed.

I studied so much this weekend that I missed BubTar's double header baseball game. I had to keep KayTar home from her dance class. We missed the big fall festival at my school. The kids didn't get to have any friends over and we didn't do anything really. It was me and my books all weekend. Now it feels like wasted time. If I was going to fail the test, I might as well have enjoyed my weekend and my kids. I know, I know...it is important that I put the effort in and if I hadn't, I'd be kicking myself over that, too. Either way, it sucks.

I'm about 99% sure that I have an ulcer. Upper middle abdominal pain, below my ribs and above my belly button...it gets much worse when standing, so I think it is probably gastric and not duodenal. It does NOT feel good. Walking up to school today, the pain was climbing all the way up into my chest and radiating toward my back, too. It made it a bit hard to breathe. Not pleasant. I'm self-treating with Zegerid, which has helped with previous ulcers, but if it doesn't help quickly, I predict a trip to student health services in my near future.

Today was supposed to be KayTar's field trip to the farm, but we had to miss it because she has been sick. Yesterday she seemed like she was on the upswing and her fever broke in the morning, but she vomited before bed, so we decided not to push it. I feel bad about it now, because she's done great today and I think she could have gone and been just fine, especially since I was going to tag along. Bummer.

The only bright spot in this bleak, guilt-infested, grump of a post is that I got my midterm grades back for history and music and I got a 102 and 103 respectively. My history professor gave me a lot of wonderful comments on my essay, too. At least I'm competent at SOMETHING, right?

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.

Weekend Update

I spent Friday shadowing our pediatrician. The more time I spend in the clinic, the more certain I am that I could be quite happy as a primary care pediatrician. I really enjoy being in clinic; I love the kids, I love the medicine...its a win-win. It is a very good reminder of why I'm tormenting myself with all of this school business. Earlier this week, I was saying to Josh, "Why can't I just be happy just being a history major or an English major? It would be so easy for me!" I could care less about organic chemistry...or physics next year...but I have to get through them to get to what I really want. I really want to practice medicine one day, and spending time in the clinic reminds me of that and keeps me motivated.

Today has been our first "normal" Saturday in a while (in fact, it has been our first normal week in a while, too!). We all went to BubTar's baseball game, which they lost, and then KayTar and I rushed to her dance class only to find out it was canceled! The Down Syndrome Buddy Walk was today and because a large portion of the class has Down Syndrome and attends the walk, so they canceled class for the day. While we were needlessly rushing to dance class, the boys were rushing from baseball to a trial martial arts class for BubTar. He LOVED it. He gets to attend classes for free for the next month and he's got his cute little uniform and white belt, but then we're going to have to come up with the money for classes or pull him out. It is a really great workout, though, and he really enjoyed it so I hope we can find the money in the couch cushions or something. ;) As of right now, BubTar has scouts on Monday nights and baseball on Thursday night...plus games on Saturday. Martial arts can be as often as daily, but they require two sessions at least each week...so it looks like it will be a Tuesday/Wednesday night event for him...possibly Saturdays when it doesn't interfere with baseball or scouting events. Sometimes I wonder when and how we became over-scheduled, middle-aged (even though we're actually only 27) suburbanites...but such is life with kids!

After we all got home and had Subway for lunch, the kids' went to play at their friends' house for a bit, then the girls came here and the boys went out to sell popcorn together for cub scouts. The girls are sleeping over here tonight and the boys are sleeping over there. I've been studying for midterms next week while the kids are playing together upstairs...and now I'm taking a break to blog, evidently. Josh has a test to take tonight once he is back from popcorn selling, so we'll just be juggling things as usual around here tonight. We had big plans for $1 margarita date night, but it looks like that will be postponed until next Saturday. I'll probably need it more then anyway, as I'll be cramming for organic chemistry next weekend. Eeek!

BubTar, bored in the outfield today.

I feel like I should post today...

But it is one of those organic chemistry lecture/orgo lab/lunch with friend/volunteer at the kids' library to help with Book Fair set-up for 3+ hours/laundry so I have clothes to wear tomorrow/quick dinner/shower and get ready/volunteer at the hospital/prep for tomorrow/get ready for bed/watch Modern Family with Josh/THE END kind of days...so writing will just have to wait!

KayTar had surgery, again.

On Wednesday night, while on my volunteer shift, I remembered that I hadn't told Josh which meds KayTar needed so I gave him a quick call. After my shift, I noticed two missed calls on my cell, so I called Josh back. He said, "Hey! I've got great news!" a little too enthusiastically. I said, "Really? Great news?" and he said, "No. Not great news. I figured out why we've been having some leakage issues with KayTar's tube." I was walking out to the parking garage by this point, so I stopped, wondering if they would be coming to me instead of me to them. He explained that the outer portion of the g-button was detaching from the inner tube.

Image borrowed from http://bieho.blogspot.com/

That flat portion lies on top of her skin, and the tubing goes down into the stomach, where the mushroom hold it in place. Well, the tubing was splitting off of the outer portion and if it had full split, the inner tubing would have falling in and the stoma (hole in her skin/stomach) would begin to close rapidly. Josh said it was only about 25% split, so I headed home and we decided to deal with it the next day. I looked at it when I got home and it was actually about 50% split, and every time we looked at it, it seemed to split more. I emailed our pediatrician and she said to call the surgeon's office when they opened.

The office didn't open until 9am, so I took KayTar to school (with her tube taped, so that it wouldn't get pulled or tugged and split further) and I volunteered in the library as usual for a Thursday morning. I started calling a little after 9am, initially I left a message with the nurse, but because my cell gets TERRIBLE reception at the school, I called back after 10 minutes or so, trying to get someone to tell me what we needed to do. The person who I spoke to said that if it needed to be switched in the OR (which is does, because it is held in place by that hard mushroom which they have to jam a rod into and then jerk the thing back out through the little hole, then do the same thing in  reverse to place the new one), then we needed to go the ER to be admitted to surgery. I told her that last time, we came in through the clinic and were sent to day surgery, but she said they couldn't do that. We had to go to the ER. Then she transferred me to the nurse, which was voicemail again, so I called back. I talked to someone else who told me the same thing, then transferred me to the nurse, which was STILL voicemail. I called back again and talked to someone, maybe one of the same people, maybe not...explained the situation and the instructions I'd been given, and they said to go to the ER as well. So we went.

Luckily, our nurse friend M was on! I asked for her at registration and she came and walked us through triage. We waited in the lobby for about 10 minutes before getting called back to finish registration, and by the time we were finished there, M came to tell us she had a room open up! Thank God for small favors. KayTar loooooves M, so having her as a nurse would make the day loads easier...and it really did. She came and chatted with us, took KayTar on walks around the floor, played blocks with us...all sorts of fun stuff. We had absolutely ZERO reason to be in the ER...she didn't need an IV or meds, she didn't need monitoring, she didn't need vitals checks...we were JUST sitting and waiting for surgery to see us, much like we would have done IN CLINIC. KayTar was NPO and acutely aware of this because it was only a week since her fast, so every time she would start to get bored, she would get a little worked up about the no food/drinks thing. The surgical residents came to see us early on, one said they might do it in the ER without sedation and I wasn't coo with that. She sees too many doctors to be majorly traumatized, which is what OUR surgeon has told us many, many times. The rest of the day, roughly 11am-7:30pm was spent WAITING FOR THE SURGICAL ATTENDING. He refused to come down or give anyone instructions for hours. Everyone was frustrated and apologetic, from the nurses to the ER doc to the surgical residents. I was in touch with our pediatrician by phone and text, and she was annoyed with the situation, too. He finally came down a little after 7pm, tried to talk me into letting him do it bedside, which I said no to, and then he basically told me he had enough cases for 12-24 hours and he didn't know what to do with us. I said, "Can't you just send us home and give us a day surgery slot?" It was like he hadn't even thought of that! It took him one phone call and about 45 seconds to get her on the schedule and we FINALLY got out of there.

On the way out, I got a Facebook message from our nurse (who had gotten off shift before we were released) inviting us to dinner at her house with her and her husband. The first thing KayTar had said to M was "I need a BURGER!" and they were having burgers for dinner. I asked KayTar if she wanted to go and she did, so off we went. It was so nice and fun, and it made KayTar forget all the yuckiness of the day. She didn't eat a burger, of course, but she had a little sweet tea and a couple pieces of bacon dipped on mayo (she's all about the saturated fats, that girl). She had been NPO for over 13 hours, so eating anything was good. We hung out for a bit and then headed home, exhausted, but much happier than we were a couple of hours before.

Yesterday was the actual surgery and it was a BREEZE compared to the recent fasting study and day in the ER. There was brief confusion when the surgeon told the anesthesiologist that he wasn't going to do her surgery, so the very kind anesthesiologist found another surgeon for her, but at the last minute the original surgeon decided to do it after all. I got a certain not-so-wonderful impression of that particular surgeon, judging from the level of exasperation EVERYONE who was working with him exhibited over the course of both days. He did his job eventually, and that's all that really mattered in the end. On the way home, we stopped at my mom's for ice cream and then we all went to dinner at KayTar's favorite tex-mex joint. It was wonderful and she ATE. When we got home, she had a fever...not from surgery, but from the virus that had caused her to wake up all congested that same morning. I'm so glad it waited until night to start, because if she had woken with it, we probably wouldn't have been able to do the surgery.

Anyway, that's the latest drama. I missed school the past two Thursdays because we were in the hospital. I was supposed to shadow the pediatrician the past two Fridays, but didn't because we were in the hospital. It sort of makes me wonder what the hell I'm doing with all this school and medicine-related insanity, when I clearly already have enough medicine-related insanity right here at home. I don't know. I don't know what I'm doing...but I do know it kind of makes me want to do it all the more, because the ONLY thing that makes all of this bearable are the wonderful, kind people who are caring for KayTar. The system sucks, there are a lot of jerks and idiots out there and a lot of hoops to jump through, a lot of unfairness in how medical care is provided...but there are a lot of wonderful people in the system who go above and beyond. There are nurses who invite you to dinner after a long day, pediatricians who will talk to you on the phone while they are at home with their own kids, school nurses who research different types of g-buttons for you and send encouraging emails when you are stuck in the torturous throes of a fasting study, ER doctors who are attentive and apologetic when the issue at hand is completely out of their control. There are good people who are passionate about medicine and about caring for people and I want to be one of those people. The system is a mess, but those people...they make it a beautiful kind of mess.

This is what KayTar wore to surgery yesterday. It was QUITE a conversation starter.


PS: If you have g-button experience, I'd love to hear what kind of button you have and how you feel about it. We use a Bard, which requires the OR switch. The two defects we have encountered are common issues according to the surgeon, and replacement is a HASSLE, clearly. We like the Bard because it is lower profile than the Mic-Key and because although the swaps are a hassle, they are much less frequent than balloon ruptures, especially with a normally active kid like KayTar. We've been looking into the minis made by AMT medical and they look pretty nice. They have balloon and non-balloon versions that seem to address some of the issues with the Bard and Mic-Key. Anyone used those? If we have another Bard failure, we're looking to switch...so we want to research and decide before we get to that point.

Wordless Wednesday: Written by BubTar

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.

Morning Report

We spent ALL day waiting yesterday. KayTar and I both took the day off of school because the nurse said we might need to go first thing in the morning or any time following that. We got the call at 5pm when the boys were on their way home with dinner. I scarfed down my Subway sandwich and we hit the road.

Right after we arrived a worker from the in-hospital radio station came by to drop off a craft for KayTar to complete. There was lots of glue and LOTS of rainbow glitter utilized for that particular project.

Anyway, if you attempt the craft, you are entered for an on-air contest where they call your name and then bring a prize to you. KayTar has won every time she has spent the night inpatient and last night was no exception! The only difference was that she is now old enough to be CRA-ZY exciited about hearing her name on the radio. While she was anxiously awaiting the announcement, she made some confetti with leftover crafting supplies and held it in her hands until she heard her name on the radio, then it was tossed into the air. She won a My Little Pony coloring book and the guy who had dropped off the craft came back to deliver it. KayTar had previously made a BIG deal out of how awesome his headband was and somehow she sweet-talked him out of it! She also received a plush guitar from a volunteer who was passing by.

After all the excitement, it was time for her last feed, pajamas, and The Little Mermaid. During the movie, they placed her IV which was not too happy about and even PRACTICED SCREAMING while waiting for the EMLA cream to absorb. She's a hoot. Anyway, they called in the charge nurse and he got it in ONE STICK. This is a very rare occurrence, because KayTar tends to be a tough stick.

After the movie it was lights out for her and studying for me. However, her alarms were going off like crazy last night. Her respiratory rate was hanging out at 11-13 mostly, so having it set for 16 meant that it was literally ringing every 30 seconds or so. They lowered it to 10, but then her heart rate monitor started going off, exclaiming, "Bradycardia!" and "Irregular!" on the screen. It wasn't too annoying when I was studying, but once I laid down at 1am, it became both frustrating and comical. For a while, every time I closed my eyes they would take turns ringing, I thought perhaps the nurses were punking me. They finally lowered the heart rate to 50 and that helped. They still rang quite a bit during the night, but not constantly like in the beginning. She was getting vitals checks and glucose checks every 3 hours, but on a staggered schedule, so I was waking up every hour for either that or alarms it seems. KayTar slept through everything, though, finger sticks included. I wish I had those skills! My best stretch of sleep was from 4-6am, when I was only disturbed once. Also, I didn't realize there was a thermostat in the room and I was frozen solid for hours, I was sleeping in my hoodie and blankets and was still shivering. When I found the thermostat, it was on 50! Geez, that is like mid-winter temps here in Texas and I was not in my outdoor gear. I got up for the day at 6am...sometimes trying to sleep is more frustrating than just getting up!

At last check, her glucose was still in the 80's. I hope that once she is up for the day, it starts dropping more quickly so we can get out of here and there will be a night of sleep in my near future. ;)

 KayTar in her new headband.