A little off-kilter.

Wednesday was one of those busy kind of days; full day of classes for me, quick stop home for lunch, then off to get the kids...girl scouts for KayTar and musical theatre class for BubTar, at overlapping times, of course! KayTar was super fussy at scouts...she cried 3 times, which is very unlike her! We stayed long enough to complete one activity and then we left at the break to get BubTar to class and because I don't think she could have handled anymore. After we dropped BubTar at class, we came home (which wasn't the best plan, his class is an hour and it takes about 15-20 minutes each way depending on the lights) and KayTar did most of her homework. She was in an oddly cranky mood, just not her normal happy self for some reason. On the way back to get BubTar, she started to look pale and tired, so I suggested she close her eyes and rest. She dozed off a little, I think, but when we arrived she woke up. She said that she couldn't walk and I needed to carry her. She was very limp and let me tell you, it is no easy feat to carry a limp almost 7 year old! My stomach was up in my throat, too, because it was very reminiscent of the onset of her neuro episodes. She perked up a little after we got back to the car, though. It was just all very unsettling. As a side note, BubTar LOVED his class. Theatre is here to stay! We put KayTar to bed early to be safe, even though she seemed okay, and she woke up a couple of hours later, fussing about her eyes hurting. I don't know if the whole afternoon was just build up to a migraine or what, but she quieted down after some ibuprofen and seemed fine in the morning.

Thursday was a totally normal day, but when I picked KayTar up, she was crying. A friend had a Wish You Well letter (when the kids are out sick, their classmates fill a Wish You Well envelope with letters and stickers of well wishes for them to get when they get back) and KayTar thought it was one that she had lost after her absence. It wasn't, but she was sad because she remembered she had lost hers. Anyway, she cried so much that her nose got super snotty and I didn't have a tissue or napkin to give her, and she either forgot how to breathe using just her mouth or elected not to, because she stopped breathing and started turning colors! On top of that, I thought poor BubTar was going to have a heart attack in the backseat with her. We talked her through it and I had BubTar model panting with her mouth and she started breathing again. I know that the worst that would have happened was that she would have passed out and started breathing...but yikes! Where those self-preservation instincts when you need them?

Friday was mostly normal, but there was more uncharacteristic crying at OT, because as she was tracing and cutting out her handprints, they were turning out like "Voldemort fingers"! It was the worst thing to ever happen, evidently. The rest of the day was fine, the weather was nice and we played outside a bit before the boys left to go camping. In the evening right before we were going to leave to go get dinner, she started complaining of stomach pains, climbed into bed, requested her hot pack, and in less than 30 minutes she vomited up her entire last feed and a lot of bacon bits. It looked a little too much like chipped beef to me. Blech! Looks like it might be the return of her gastroparesis symptoms, unfortunately. We took it easy on the food and feeds yesterday and she didn't have any pain, but last night she told me that she was too full for any bedtime medicines or she might throw up. I hope that she hasn't entered back into that cycle of daily or near-daily stomach pain. The Augmentin seems like a stop gap at best and then I don't know what will come next...I'm a bit worried it will cause her quality of like to take a little hit (meds with unpleasant side effects, more time hooked up to feeds, ect), but hopefully not. My fingers will be crossed that she has a great week this week and the weirdness of this week was just a minor bump in the road!

Ketchup.

1. I bought a new-to-me car on the 14th! The minivan was super nice, but it was guzzling an immense amount of gas with my commute into downtown for classes. If our calculations were correct, we were spending more on gas than the car payment! So, we traded it in the 2007 Dodge Grand Caravan for a 2008 Scion xD and I LOVE it! It is so fun to drive and the difference in fuel efficiency is insane.

2. KayTar is magic. Seriously! We went to lunch the other day and there was a display with a PacMan ghost in it. She says, "Aww, I wish I could have that." as we were explaining that it was part of the display, so she couldn't...the hostess said, "Sure! You can have it!" Then, as we were leaving, there were flower pens at the register and she said, "I wish I had one of those!" The next thing I know, the cashier pulled out two brand news ones and let KayTar have her pick!

3. Inspired by The Muppets, BubTar has learned to whistle!

4. I got some kind of nasty virus last week and was in bed from Friday night through Sunday morning basically. It was TERRIBLE! KayTar was so sweet, though, and when she checked on me, she told me, "You look GOOD! You're sooo beautiful!" Such a darling.

5. My semester is off to a good start. All of my classes seem interesting/not too taxing, and I think I'm going to love Sociology!

6. Words cannot express how much I love this photo of BubTar. He is the handsomest!

7. KayTar's stomach is a little better, but not 100% yet, or even back to 90% or whatever it was that she was functioning at prior to this little bump in the road. However, since we increased her meds, the pains seem less intense and more fleeting...but still there, which I don't like. She puked Friday night, too, no real reason. C'est la vie!

Seven is a lucky number, yes? Let's stop here.

I'll be back tomorrow (or thereabouts) with some theater rehearsal updates! :)

GI Plan, take two.

KayTar has had abdominal pain every night since Thursday! We haven't gotten a normal volume of formula in her in several days. Yesterday we were only able to give her two feeds and then we tried a third (slow) feed after she was asleep and the pain had subsided, but when I went to check on her, she had unplugged it because it was making her uncomfortable and we had been feeding the carpet for who knows how long (long enough for there to be a visible puddle of formula if I pressed on the carpet!). Five nights of pain is MORE than enough, so I did some research and we are going to change some things in hopes of making this better for her.

I found this article last night, which has a LOT of good information in it about gastroparesis. It is a tough subject to get quality information on and many physicians are not familiar with it. There is also this article by the same people which is newer and has more specific information on the nutritional needs/deficiencies and how to treat them, but since KayTar's nutritional status is still good, the first article covered the specific information I was looking for more succinctly. The main tips they outline in the articles are:

1. Smaller, more frequent meals, which facilitates improved gastric emptying.
2. Use more liquid calories (solids in the morning, transitioning to liquids later in the day).
3. Glucose control (if hyperglycemia is a contributing factor, it isn't for KayTar).
4. Avoid medications that slow gastric emptying (the only one KayTar takes is Benadryl).
5. Limit fats (but only if you have tried the previous 4 steps without success)
6. Limit/avoid fiber which can form bezoars or ferment in the slow moving gut, making things worse.
7. Treat bacterial overgrowth, if suspect.
8. Monitor and replace iron, B12, vitamin D, and calcium.

We decided to start by reducing her feeds from 8 ounces to 6 ounces today. And we let her have solids during the school day, but have transitioned to liquids/purees since she has been home (and powdered parmesan cheese...not sure what that counts as!). We will give her system a couple of days to adjust to this, but if this doesn't help sufficiently, then we will further reduce the feeds to 4 ounces as at time. It is kind of a pain to maintain that sort of schedule, but figurative pain for us is better than literal pain for her, so we will do whatever she needs us to do to help her feel better. If none of that helps, we will cut out solids for a couple of days to see if that helps, and then slowly add things back in as she tolerates it. I would hate to have to go that far, because she does get enjoyment from eating the few foods she will eat and it goes against everything in me to tell her that she can't eat. Additionally, I just spoke with the GI nurse and she said that the doctor wants us to increase KayTar's Augmentin dose from 5ml of the 200mg strength (QID) to 6ml (still QID) for 2 days and if it doesn't cause diarrhea or any other negative symptoms, she wants us to increase it to 7ml after that period. (On a side note, the turnaround time at the satellite clinic is AWESOME, less than 12 hours!) She is also being referred to a motility specialist.

I'm hoping that one or two of these small changes will be enough to relieve her pain. I just hate that she is hurting every night and I can't fix it for her. I'm so thankful that otherwise she is doing well; she is able to go to school, she is healthy, and the pain is mostly limited to the evenings before bed...it could be worse in a multitude of ways. Hopefully we will get this under control for her soon!

Back here again...

KayTar is having motility issues again. :(

Last Wednesday and Thursday, she as nauseated at lunchtime. I thought it was probably just from getting back into the school routine, though. Then on Monday morning, as I was leaving the kids' school after helping out in the library for a bit, I was surprised to find KayTar in the clinic! She seemed okay, but was there with tummy pain complaints. She laid down with the warm tummy bunny and chatted with the nurse and me, and bounced off to class not long after feeling better.

That night, I heard her calling me over the monitor and went to check on her. She said, "My meds are leaking on me." (meaning her g-button was open and leaking a little) I felt her shirt and it was soaked! But her button was closed, so it hadn't leaked. I turned her lamp on and was surprised to find her covered in Pediasure! She was insistent that she didn't throw up, so I checked with Josh to be sure everything was plugged in properly when he unhooked her from her feed and turned to pump off, thinking maybe we had fed the bed, but he said everything was plugged in and she was dry when he turned her pump off. The Pediasure was partially processed upon closer inspection, so she clearly vomited, but she didn't wake up or even know it had happened! That makes me super nervous, because if you don't wake up when vomiting, you don't protect your airway! She used to do this, but we usually heard it when it happened (coughing or some signal it had happened) and we had hoped she had outgrown it. Boo.

She had tummy pain at bedtime on Thursday night and again Friday night. Shortly after saying her tummy hurt, she vomited. She threw up undigested food that she had eaten roughly 10.5 HOURS before vomiting. Almost half a day earlier. It was still recognizable; chewed and swallowed, but that was all!

I'm not super thrilled to be seeing the return of dysmotility symptoms so soon. We started her on Augmentin on October 18th and started seeing improvement around the 24th. Things got progressively better through November and by early December she was *almost* back to baseline, the pain had stopped and she was back to normal feed volumes (but not normal rates). We never quite got there, but we were close enough to be pleased with the progress. But here we are mid-January and those old symptoms are back. At her GI appointment, the doctor said that we can go up quite a bit on the Augmentin, which is good, but if it only takes a couple of months for her body to adjust to the medication and subsequently need a higher dose...this probably will not be a long term solution, especially if this is a progressive problem. Of course, without the benefit of a diagnosis, nobody can really tell us if it is disease progression or what to expect down the line. So, we'll just continue to take it a day at a time and try to make the best decisions we can for her, with the information we do have.

For now, I've slowed her feed rate back down, but not had to reduce the volume. I'm also making her take a break from meat, hoping that the effort her gut would need to process that might be better used to process her formula more efficiently. If she continues to struggle this week, I'll put a call into the GI about increasing her Augmentin dose, too.

I think we're getting there!

Since starting KayTar on Augmentin, she hasn't had any abdominal pain! Her current GI med/feed schedule looks like this:

5am: Nexium

6am: Augmentin + 6 ounce Pediasure (over 45 minutes)

11am: Augmentin + 8 ounce Pediasure (over 1 hour)

3:30pm: Augmentin + 8 ounce Pediasure (over 1 hour)

7pm: Nexium

8pm: Augmenin + 6 ounce Pediasure (over 45 minutes)

Actually, last night Josh forgot to adjust the dose on the pump, so she got 8 ounces at bedtime and it went well! We're keeping at the 6, 8, 8, 6 schedule for a couple more days and then we'll move up to all 8s and see how it goes. She is also eating pretty well (for KayTar), even her beloved meats are not causing pain. Thus far, I would say the Augmentin is a success and I hope that it continues to be helpful to her! 

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On the respiratory front, KayTar might be having her sleep study done this week IF the pulmonologist's office can actually get the orders sent out. One of the most frustrating aspects of having a medically-complex kid (aside from the way the new Zevex bags stick to the bottom of the spout and make me spill formula once a week, at least) is all the calls to physician's offices and schedulers to make sure orders get sent, received, and to the people they are supposed to get to so tests can be scheduled (or to make sure referrals are made or that lab results are received or that the medical supply company sends/receives updates prescription forms on time and so on ad nauseum). If you don't have experience with this little game, you would be SHOCKED to know how many times the ball gets dropped during the process. It seems very straight-forward; doctor writes an order, staff member faxes an order, scheduler receives an order, calls parent/patient to schedule. But it usually goes more like this, doctor writes order, forgets to sign order, parent calls office to check on order after a week, doctor supposedly signs order, order is supposedly faxed to scheduler, parent calls scheduler (another week later) who has not received the order, parent calls clinic to check on order, staff tells parent that order was faxed already, parent asks if they would mind refaxing it, parent calls scheduler to notify her that orders are coming, asks for a call back....and waits. Repeat calls daily until orders are received by scheduler. So, that is where we are now, but the scheduler told me that they have an open slot on Wednesday, so if the office gets the orders to the scheduler soon, KayTar will likely be having her study done this week. Fingers crossed!

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In other news, BubTar finally decided on his costume: Dr. Who (the 10th) Isn't he cute?!

The GI Plan.

KayTar had her follow-up appointment with her gastroenterologist yesterday. Dr. R is one of my favorite doctors and not JUST because she has let me shadow her service before! She is always interested in KayTar as a whole child, not just a GI tract. She talks with both of us and even allows KayTar to have a bit of stage time to tell jokes/do impressions or whatever she happens to think up. I have never felt rushed in one of these visits, which was especially appreciated this time as we had a bit more to discuss than usual, since KayTar's GI system has been the biggest troublemaker lately.

First, we discussed the gastric emptying scan. She confirmed it was abnormal and that KayTar is having motility issues. I asked if the half-emptying time is volume-dependent (meaning that it always takes her stomach 73 minutes to just move 1.5 ounces out) or not (meaning that 4 ounces would move through in the same time frame if it was half of the stomach's contents), and she said in MOST people, it is not volume-dependent and the stomach should half-empty in the same time threshold whether there was 3 or 8 ounces in there to start. However, she qualified that with a "BUT, this is KayTar, soooo I can't say if that is the case here or not. Her motility may worsen with increased volume." Basically, the scan was enough to confirm the clinical symptoms we were observing in her sudden volume intolerance and increased reflux, but it can't give us more precise information.

Then, she gave us the new plan. She is switching KayTar's PPI from Prevacid to Nexium, which we will start tonight. Then, in two weeks, she wants us to try to transition KayTar back to her normal formula volume. If it works, great! If not, then we will start giving KayTar a dose of Augmentin prior to every feed as a prokinetic to help induce more normal motility in her gut. If we are still unable to get her back to regular feeds, we will just continue with this smaller/more frequent feeding schedule, and follow up in January. She said she likely will not order any further testing until summer (at the earliest) because she doesn't want to disrupt KayTar's school schedule and the next tests are rather unpleasant. She said that if her overall intake and growth continue to be good, we may put it off until it is really necessary to put her through. Hopefully one or both of the new medications will help get her back on track, but if not, I'm fine with the plan she has laid out for KayTar.

Finally, we discussed what might have triggered this change. She said it may be a post-viral phenomenon from her relatively minor viral infection in June...but probably not. She said it may just be "a KayTar thing", which is the category most things fall into. She also said it could be disease progression (what disease? we don't know!), but that said she'd like to ignore that last one and that I probably would, too. She is definitely right about that. Losing ground is one of the hardest parts of any disorder/disease, I'm sure, but it is especially hard when you don't even know what disease is causing it to happen and if it might be preventable if you DID know what you were up against. So, for now, we are just going to keep on trucking and not worry too much about that aspect of it. We'll try the new medications and then go from there, depending on what the results are. The new feeding schedule isn't the worst thing to ever happen, in fact, she hasn't vomited once at school this year (knock on wood), but it is more disruptive for her and for the people caring for her, whether at school or at home....so if we can get her back to "normal" (or maybe even up to 6 ounces every 3 hours), I think everyone would be pleased!

Completely unrelated photo ;)