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."


****
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.

Necessities.

Tomorrow is the big day, it will be time to start packing soon! Here's what the 'Tars bring to the hospital with them.


For KayTar:
Lalaloopsy doll
Pillow pet
Gee
Quilt
PJ bottoms
1 change of clothes to go home in
Leapster and games
I Spy Bingo
Color sheets/projects from school
Tiny Disney Princess dolls/accessories

For me:
Via coffee, creamer (sometimes the floor coffee sucks!)
Clif bars (for when I'm stuck in the room at mealtime)
Laptop
iPod touch
Camera
Cell
Change of clothes
PJs
Toiletries/make-up
Study materials
Pillow
Hoodie (it is often a bit chilly)

I think that is about it! KayTar and I are pretty good at entertaining each other, so I don't know that she'll ever play with her princesses or Leapster, or that I'll ever study, but there is usually some downtime and I like to be prepared just in case.

Sleepover in the Hospital

KayTar had her follow-up endocrine appointment on Friday. It was a bit surprising. The attending said it was time to go ahead with the inpatient fast. Then the fellow said, "How is next week for you?" which is REALLY surprising, as I don't think we've ever had any appointment, inpatient or outpatient, be scheduled within a week. I was expecting it to be scheduled for summer or maybe in early 2011! Nope, it will be Thursday and Friday of this week. Hopefully it will only be Thursday and Friday, but they'll keep her as long as it takes to get her glucose to bottom out. I don't predict that it will take long, but there is a chance it will because her energy expenditure in a hospital room will be considerably less than a normal day at school having music, PE, recess, ect. 

In case you are wondering, this is what a controlled fast consists of:

*We will call the hospital on Thursday morning to find out when they will have our room ready.
*She will get all her normal feeds on Thursday, but following her bedtime feed, she won't receive anymore nutrition until her glucose bottoms out.
*She will be monitored and have glucose checks every 1-2 hours.
*Once her glucose is below 50 (I think...there is a chance they said 40, but I can't remember precisely), they will draw critical labs, which sometimes test positive for things that are negative under normal circumstances.

Sounds super fun, right? Starving your kid for a couple of days? Gah. However, this is one of the only times it works in our advantage that KayTar doesn't really get hungry like other kids...initially she will be okay with it, I think. Problems will arise when her glucose starts to drop and she starts to feel it and panic. I'm not looking forward to that AT ALL. I'm also a teeny bit worried it might trigger an episode and I don't want to ruin her record!

When she has labs done or testing that is unpleasant, we always let her choose a reward. Her request for this hospital sleepover was a LaLaLoopsy doll, preferably Jewel Sparkle.Yesterday I went to FIVE stores and none of them had Jewel Sparkle or her second choice Crumbs Sugarcookie. My mom and dad had gone to the country for the day, so I asked them to check the stores they passed, after 3 stores, they found Crumbs Sugarcookie, so they bought it for her. KayTar was so happy! She said, "Well, I'm all ready for the hospital now!" Mission accomplished. Now, if only I felt as ready as she does!

Game Two.

 

BubTar is at his second game of the season right now, the first away game, and I'm here at home with KayTar who keeps having such major large pull-up blowouts that we cannot leave the house. He got a ride with his best friend's family, which made his day, but I feel terrible about missing it! Josh is at a mandatory scout leader training session today and my parents are out of town. Fortunately, my mother-in-law went so he had a couple of fans in the stands!

He just got home and they did great! They almost didn't get to play because they only had 6 players, but they did and they tied/won (depending on who you ask)! My boy got two hits and made it all the way around the bases for the first time today, too...and I missed it! It is a shame that parenthood does not come with omnipresence. 

Mornings with KayTar

                       

 

KayTar is home sick today and I don't have class, so I thought it was the perfect time to play around with my camera, and try my hand at shooting some photos in manual indoors. They are far from perfect, but I really enjoy the glimpse of our everyday life that they provide!

Lucky.

If I had written this post on Tuesday night, it would have been titled,

"Student-Motherhood: This Sh!t is Hard."

Tuesday, as luck would have it, was one of those clusterflucky days that seem to crop up when you have something really, really important going on. For me, that really, REALLY important thing was taking a history exam in the morning, and then studying for organic chemistry for the rest of my life, or until 8:30 am on Wednesday, whichever came first (because let's face it, it might kill me). KayTar had an iffy morning, very congested, but she had no fever, so we decided to send her. I sent the nurse a quick email to let her know the specifics and hoped for the best. After completing my history exam, I skipped Music, so I could get home to study, and on my way home I got a call from the school nurse. KayTar had vomited in the cafeteria during lunch and she was chilling with her BFF the nurse. They were wondering which meds to give, basically, because KayTar had decided she just needed a little rest with the nurse and then she could go back to class. I told the nurse my best guess on the proper meds for this situation (which was mucus/cough-induced vomiting, not VOMIT-vomiting) and said that if they were sure she felt well enough to stay, I'd let her. I went home and studied until it was pick-up time. In the evening, KayTar was much worse. Coughing, vomiting (still from congestion), diarrhea (HA HA, Universe...my chronically constipated kid suddenly has the runs, and I'm changing diapers left and right instead of studying. SO HILARIOUS.) Josh and BubTar were committed to a Cub Scout engagement that night, so that left me with my books and the sickie. It was like ping-pong...chemistry-KayTar, KayTar-chemistry, chemistry-KayTar..."Mom, I pooped my pull-up." "Mom, I threw up on the floor." "COUGH, COUGH, COUGH-GAG." all evening. Then the boys got home and Josh had a paper that was due in AN HOUR that he hadn't typed or proofread yet. I abandoned my studying to get BubTar fed and ready for bed while Josh frantically typed his paper. Once his paper was done, he took over the kids and I went back to the book. I put in 11-12 hours into studying, but I was interrupted approximately 2.5 million times. It was hard and frustrating and there were several moments when I wondered what the hell I was doing, but I kept at it. In the morning, I got up a little earlier than usual to go over a few things I was still struggling with remembering and went through my index cards a few times. I had serious doubts that I was retaining anything. I dropped KayTar off at my mom's house and went to take my exam. I still don't know my grade, but I can say that when I started that test, I was relieved to see that I recognized/understood nearly all of it. There were 3 that I was fairly unsure of, but the rest I either knew or was able to reason my way through. I did not leave class with that dreaded, "OMG, I just totally bombed that." feeling I experienced once or twice in general chemistry. I really hope I did well, because I worked hard for it.

As difficult as Tuesday was, and as difficult as so many days have seemed lately between school and sick kids and other minor crises, I can't help but recognize how lucky I am. I'm lucky to have a goal that I'm so passionate about that I can torture myself like this and feel like it is all worthwhile. I'm lucky to be in a partnership where we both support each other in our educational endeavors. It makes it tough sometimes, balancing our unique kind of family life with TWO parents in college when one has a full time job, but it also adds a level of understanding to our relationship that we wouldn't have if we weren't both going through similar struggles. I'm lucky that I not only have great family support within my marriage, but in my family in general. My kids are so excited about me pursing this, they love that I'm going to school so I can become a doctor. They are always asking me about what I did in school and how my grades are, just like I do with them. My parents help out so much with the kids, especially watching them when they are home sick and I have to go to class. I absolutely could not be doing this without all of that support. I still think I'm certifiably insane to be doing this, but at the same time I can't imagine NOT doing it...and that makes me pretty lucky, I think.

PS: I changed the blog title, in case you were confused when you saw this in your reader.

S.O.S.

I've been studying organic chemistry for 10.5 hours already today. After I post this, I've got more to do. KayTar is sick now, of course...lots of vomiting, wheezing, and pull-up changing around here today.

Help! Send C8H10N4O2...preferably with a splash of OH group for good measure. ;)

-Kyla

The rest of the week.

This was definitely one of those weeks. Monday was decent. Tuesday was the day of KayTar's hypoglycemic incident and the killer GPS debacle. Wednesday KayTar had a very wonky day, in retrospect I think it was repercussions from the hypoglycemia and altered feeding schedule on Tuesday. Thursday morning I woke up with a fever and body aches, hauled my butt to class (which is an hour away) anyway, only to discover my first class was canceled and the professor hadn't let us know beforehand. AGH. Friday was mostly fine, until the afternoon when I received a letter from the kids' insurance company saying that they were no longer eligible. I nearly lost my shit when I opened that letter. KayTar is almsot 100% dependent on her enteral feedings. Enteral feedings require tubing, bags, syringes, and PEDIASURE...4 per day on average. All of that is very, very expensive out of pocket and KayTar's insurance basically keeps her alive at this point. Without enteral feedings, she would not get enough nutrition to survive. So I called the company in a PANIC, and the customer service representative said, "Whoops! That letter is incorrect. Your children are still covered and you will be receiving a corrected letter in a few days." I could have tongue-kissed that lady, I think. WHEW!

Yesterday afternoon, prior to the insurance panic, I was at the kids' school and I had some VEEEERY interesting conversations with the nurse and librarian. Turns out that KayTar's episode of hypoglycemia on Tuesday and her legitimate visits to the nurse on Wednesday opened up a whole new world to her. She discovered that the nurse's office is sometimes a pretty happening place...sometimes there are other kids hanging out there...some kids get cool stuff like ice packs and warm buddy bears and band-aids! Even when those awesome things aren't happening, the nurse, who she is buds with, is ALWAYS there to chat with. So on Thursday, she started inventing reasons to leave her classes to visit the nurse. By Friday, the reasons she was leaving class were NOT the reasons she was giving once she was at the nurse! On top of that, she is making pit-stops in the library to chit-chat with the librarian and the kids who are having library time. Basically, she's using the fact that everyone is cautious about her medical issues to get out of class for social hour. OH MY. She isn't in trouble, and everyone involved is kind of getting a kick out of it because it is just soooo KayTar, but we're brainstorming about how to curtail it. It is tricky because she DOES have legitimate medical issues and we do want her teachers to be cautious of her symptoms...but we don't want her getting a free pass whenever she feels like taking a walk around the building! We've got some ideas (giving her one "emergency" nurse pass per day to cut down on frequency, but if she uses it then she won't have time for library/AR testing time in the afternoon to make unnecessary trips less appealing, written passes with specific instructions on where she is/is not supposed to go while out of the class to help her focus, ect.) that we plan to try out next week, so I'll updating about it again later.

BubTar had his first baseball game this morning and THEY WON! He is enjoying it so much more than basketball and hey, they actually WON, that never happened in basketball. As soon as the game was over, we rushed home, changed KayTar into her dance gear, hooked her up for a tube feed in the car, and raced to class...barely making it. During dance class, I met another mom who has an undiagnosed kiddo. It was so NICE. A large percentage of the class is made up of Down Syndrome kiddos and all of those parents chat with each other, but it is a bit of an insular community...so it was nice to have someone to swap the frustrations of being one of the undiagnosed ones with. Having a perpetually undiagnosed kid comes with its own set of unique struggles, one of which is the fact that it is pretty tricky to find any sort of support system that can really empathize with you about it!

PS: I'm making some layout changes around here, so it may look kind of like a construction site for a bit. Hopefully it will be back to some sort of normal in the next week or so. Also, I love the new post editor in Blogger, if you haven't switched yet, I recommend it.

Wonky Day.

Oy vey! KayTar had quite a strange day today! I think she made at least 4 trips to the nurse and it seemed like the nurse and I were communicating via email nearly all day.

Let's go back to last night and start there. KayTar tolerated a Pedialyte feed yesterday afternoon, and a half and half (Pediasure/Pedialyte mix, not the kind you put in coffee) feed before bed. She didn't vomit anymore, even after the Zofran wore off. This morning, I gave her another half and half feed because it is gentler on her system and she is more likely to tolerate it well. The downside is that it doesn't hold her over as long. I sent some baby food veggies in her lunchbox labeled "Breakfast", and emailed the teacher to let her know KayTar needed to eat those at breakfast to give her glucose a bit of a boost mid-morning, because it is one of the only remaining carbohydrates in her diet.

KayTar did eat about half of the jar, but I guess it wasn't sufficient. During PE, she freaked out a little, saying she was very hungry. She only does this when her glucose dips and she starts to feel it...it is like mild panic, not typical hunger. She went to the nurse and ate a couple bites of the tuna from her lunch and felt better. The nurse didn't check her glucose at this time. Next, she went to music and complained once again. It is important to note that KayTar HATES eating and LOVES school, especially her extras, so this wasn't a ploy to miss class. Because it had only been 30 minutes and it was pretty close to KayTar's standard glucose check and pump feeding, the nurse decided to let her finish music and then check her out after. It was earlier than her regularly scheduled glucose check and KayTar's glucose was 63, which is a little low, but not in the worrisome range quite yet. She got her tube feed immediately and all was well.

Later in the afternoon, she started to complain of being exhausted and was very insistent that she needed to lay down, so she went baaaack to the nurse. The nurse checked her glucose with a different meter that was handy and her glucose was 83, which is firmly in the normal zone. There is some variation from one meter to another, but I doubt it was a 20 point or more difference in readings, so I'm guessing that she was probably somewhere in her safe range, if not exactly in the 80s. KayTar said she thought she was going to vomit, but thankfully she didn't. She laid down for a bit and went back to class when she felt a little better. I picked the kids up via the front office today instead of the line because I didn't want her out in the heat and the sun after a day like this. When we got home, I checked her glucose and it was back down to 57 (her third verified low number in less than a week). I gave her 4 ounces of Pediasure, rechecked her glucose and it was 106, then gave her another 4 ounces shortly after...her glucose was 86 not too long after that, still a good number, and she kept all of her Pediasure down. Success!

I'm not sure WHAT was going on today. I have a suspicion that it is glucose related, but most of her readings today were not in the danger zone. I think that her levels might have been jumping/dipping more than usual, causing some unpleasant side effects. Perhaps she is at a deficit from the lack of regular feeds yesterday? I honestly don't know. I think that the extra energy she expends at school is coming into play, too, but I'm not sure what we need to do about it. We'll see how tonight and tomorrow go, though. I hope we find a solution and get her crazy little system back to equilibrium soon!

One of THOSE days.

Yesterday morning sucked, so last night I did extra prep and woke up earlier to make sure this morning wasn't a replay. Everything went off without a hitch! It was a splendid morning, but once I was at the kids' school organizing book shelves, I started to feel a familiar tightness in my chest. I thought it might pass, so I ignored it for as long as I could, but it started taking considerably more effort than usual to breathe, so I took a couple of hits from my Ventolin inhaler. It helped a little, but not quite enough, so I left a little early so that I would have time to run by the house to take a Benadryl and a couple of puffs of Symbicort before heading to my classes. The thought of all of the walking (all the garage stairs, the trek up to my building, ect) in my current state was incredibly unpleasant. Long story short, by the time I got to school I was breathing much easier...however, I nearly passed out in history class from the Benadryl and I'm pretty sure my eyeballs drifted back into my head of their own accord at least a few times. I got some Starbucks before music class and managed to stay conscious for it.

During music, I got an email from KayTar's school nurse. Her pre-feed glucose reading was 58, but she was asymptomatic. I asked her to recheck it when her feed was through and she did. It was 113. Kind of a jump, but much better. After class, I was walking to the car talking to Josh about KayTar's low reading (her second in as many weeks), when I got a call from the nurse. KayTar had vomited up her lunchtime feed. I asked her to dose her with Zofran and told her that I would call my mom to pick her up. When she gets hypoglycemic, sometimes she doesn't tolerate her feed. I jogged up all the stairs in the parking lot and instantly regretted it. Stupid lungs. Once I got in the car, I realized that my gas gauge was on E. Crap. While I waited to get out of the garage, I called the nurse back for a bit of info...was she coughing before she vomited or was it straight up puke? It was the latter. We briefly discussed how we might handle her asymptomatic low numbers in the future. (I'm still not exactly sure what caused the vomiting, but I think it was glucose related...she has no fever and hasn't vomited again. She seems okay now, but that could be the Zofran talking.)

Once I was out of the garage, I asked my GPS how to get to the nearest gas station. It directed me further into the city and I obeyed, it drove me right into a traffic jam. When I finally reached my destination, IT DID NOT EXIST. I asked my GPS for a second gas station, and headed towards the location. It directed me into a not so great part of town. I turned down a road that had a busted up, abandoned boat in the middle of the street that had been tagged with graffiti. It was no bueno. Then I reached the supposed gas station and it DID NOT EXIST! I had a few choice words for Dr. Corday (my British GPS) at this point. She drove me into the ghetto for nothing! I wasted gas on two separate wild goose chases. I was out of patience by now, so I called Josh and told him that my afternoon had suddenly become a clusterfLuck and I was getting on the freeway and if I ran out of gas, he'd have to come save me because I was not getting off the freeway until I saw a gas station with my own two eyes. Thankfully, I made it to a gas station in time and did not need rescuing...but I turned off the AC to conserve gas and it was not pretty. Fall does not exist here.

When I finally got to my mom's house, KayTar was looking pretty good. The Zofran had stayed down and she seemed herself. We left, stopped at the store for some Pedialyte for her and lunch for me, and headed home. When we got him it was after 2pm and I usually leave to pick BubTar up at 2:30pm. There wasn't time for me to give KayTar a slow Pedialyte feed and leave in time to get him, so I asked my mom to pick him up for me. She agreed, so I set up KayTar's feed and fed myself. I kept expecting to hear them at the door, but I didn't. My mom usually picks him up in the front office to avoid the pick-up line, but I figured she just went through the line this time. Then it got later...and later...then it was past the time that I usually get home with the kids, so I called my mom, thinking that she had decided to let him hang out at her house for a while...but SHE HAD FORGOTTEN TO PICK HIM UP! Oh geez. She left right away to get him, but a few minutes later I got a call from the school saying he was waiting in the office. Poor guy. WHAT A DAY!

The kids' school has an open house tonight, but I don't think we're going to make it. I still don't know what is up with KayTar's vomiting and we don't like to share our germs with others. It is only 4:30, but I think we should call it a day right now...just to be safe! ;)

Baseball and Ballet!

Fall activities have started in the 'Tar household!