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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Wednesday, June 29, 2011

First swim and more beans

Raya got to have her first real swim since she got her G tube last fall. Being the paranoid person that I am (and seeing all the nasty bugs & misc. floaties in the kiddie pool) I decided to cover her GJ with tegaderm (a thin clear waterproof adhesive). We have an ample supply of it since we never used half of what home health sent when she had the NG tube and even though she hasn't had that for 10 months they still occasionally send it. :) Anyway, here's my attempt at waterproofing her:

 It ended up being pointless because it only lasted about 10 minutes once we got in the water and then it came off. I had to use 2 pieces because the tube is so huge and she was being really squirmy so I probably didn't seal it well enough. Oh well, at least I tried. :) This tube doesn't fit as snugly as the last one so hopefully nothing bad swam in there while it was exposed.
 When I took the extension tubes off, she kind of panicked. She picked them up, lifted up her shirt and tried to put them back on. When she couldn't do it, she held the tube out to me and made her little grunt noise that she makes when she wants something. It was one of those funny but sad moments. She's definitely not used to having no tubes taped to her stomach!
I don't have any pictures of her in the pool last year because I was always the one holding her in the pool, and this is the only one I got yesterday for the same reason. :)
She wasn't a huge fan of swimming. She seemed conflicted and I think it pushed her limits sensory-wise. She definitely wasn't afraid of the water but she could only stand being in it for a few minutes at a time and then she would want me to stand up so she was out of the water. She was back to how she used to act when she'd want me to pick her up and hold her but not really touch her. She sat on an inflatable lounger for a few minutes and liked that until water started filling in around her. I tried putting her in a baby float ring but she HATED that and wouldn't stay in it at all. Most of the time I just held her. There's a stair/bench that runs the entire width of the pool in the shallow end so she stood on that for a little while too and held on to the side of the pool or played with a toy that was on the pool deck. She also sat on the floating lounger while it was sitting on the pool deck. :)

It seems that Raya eating beans was not a fluke. She wanted more yesterday while the kids were eating their "lunner" (late lunch/early dinner). Or is it "dinch"? Well, anyway, she wanted more beans because I was eating some so I gave her a 1/4C measuring cup that has a 1/8C line in it and filled it up to the 1/8C line. She chowed down and ate all that she could get out by herself so I filled it up again to the 1/8C line. She ate that too and followed it with some water, most of which ran down the front of her. She pointed to the bib and said, "Wet! Wet!" :)
Since we had gone to OT (the therapist was out sick & nobody had told us) and then went swimming, I had only drained her stomach twice for about half an hour each in the morning. I figured 2 hours after she had eaten the beans that it should be ok to unclamp her tube but as soon as I unclamped it, beans started coming out. Then they stopped coming out, meaning that the tube was clogged with beans. I flushed it with about 30ml of pedialyte since it was hot & we had been outside a lot and then clamped it again. I tried again a couple hours later and figured that 4 hours after she ate, there definitely shouldn't have been beans left but once again, the beans started flowing and clogged the tube. I flushed it again, tried it again at 9:30 (6 hours after she had eaten).
By 11:00 she had drained 25ml of fluid but beans were still coming out and clogged it again. Since I had flushed it 4 or 5 times since she ate and it had been 7 1/2 hours, I really didn't think there should be any beans left. Her drainage was only 115ml for the whole day, which is a fraction of what she was having so this is good. I'm definitely feeling better about being able to switch her back to a G tube but given that it took over 7 hours for the 1/4C of beans to be gone out of her stomach, I'm wondering if we might run into problems with delayed gastric emptying (DGE) again.
She had a great session with her feeding therapist today, which was shocking after how awful her PT session went this morning. It was the worst PT session she's ever had (except that she used to vomit at PT and she didn't do that today) and I will still be surprised if none of our neighbors called CPS because of all the screaming that was going on. :) She was a big huge sensory mess for her PT and then took a short nap, which I woke her up from when her feeding therapist came. I filled her in on what's gone on with the bile drainage situation since our last visit and what the doctor's plans are for next week and then gave her the oh-so-exciting news that Raya ate beans two days in a row. We sat her in the chair, which she was excited about, and started with the last of the beans I made. Her FT actually took a picture of her eating because she was excited about it. :)
Most of the session was discussion about things we could try with her. Since she is now actually swallowing something, our next objective will be to get her to start chewing and using her tongue to move the food around in her mouth to where it needs to go. (that's why she loses most of the water that goes into her mouth before she can swallow it) We still need to go slowly with advancing her to new foods just in case there are allergies. Basically we're just going back to the point where most babies are at 5 or 6 months of age when they start on solid foods except that she can pretty much feed herself. :) We're going to focus on foods that can be made to a similar pasty texture as the beans to start with and avoid anything that will aggravate her reflux. We have a lot of ideas now of where to go next so I'm feeling better equipped to keep her progressing while we have breaks from therapies for the next few weeks for therapists' vacations.

Monday, June 27, 2011

Raya ate food

Yes, it's true. Raya ate. And this time I'm not just talking about her usual grazing off the floor under the big kids' chairs:

She got stuck so she laid down and took a little
rest while she figured out what to do next. :)

She actually ingested food. What is her food of choice? The second food she has actually been interested in enough to come back for more? (the first one was bacon but she lacks the equipment & coordination for that :) Well, you've heard of the magical fruit...
BEANS. Refried, to be exact. Homemade & nicely seasoned, not from a can. :) 
 I was making dinner and she started doing the little point & grunt/whine thing she's been doing to tell me that she wants a bite, so I got a little bit of beans on a spoon and gave it to her. Earlier today I had done the same thing with warm applesauce (she doesn't like cold in her mouth) but she had one taste and then wiped it out of her mouth with her hand and clamped her mouth shut, so I wasn't expecting much with the beans. To my surprise, she wanted more bites. After 4 or 5 little tastes, I got a little measuring cup out and put a tablespoon or so of beans in it and gave it to her with a baby spoon. Wouldn't you know the little stinker just chowed down on it!
 I let her keep going until she got the yuck face and stuck her tongue out and started making the noises she makes when she wants me to clean the food off of her tongue for her so she doesn't gag. :) After all was said and done, she had probably consumed a total of 3-4 tablespoons. I didn't measure it before I gave it to her but I think that's a pretty good guess. She's never swallowed that much of any food before.
I had planned on draining her stomach at dinnertime but then she started eating so I couldn't. Didn't want beans clogging up the G port. :) For today, she's only lost 150ml of fluid so far. Once her stomach has had a little more time to move the beans through, I'll unclamp her again and see what happens. I don't understand why she suddenly can handle all the changes I've made with her this weekend but I'm happy that we've found a food that she tolerates the taste AND texture of and that is edible for someone with 7 teeth (as opposed to the bacon :). She also really likes water. She wants drinks all the time. She's still not great at swallowing though and she usually ends up letting it run back out of her mouth. Then she points to her shirt or my shirt and says, "Wet!" :)
Keep up the good work Ray-ray!

There is such a thing as too hot to swim...

I made a comment to a family member the other day about it being too hot to swim that day. "What do you mean too hot to swim?!? That's an oxymoron! When it's hot, you're SUPPOSED to swim to cool off!" That day, however, it happened to be 113 degrees outside with no shade at the pool and me vs. 4 kids who aren't good swimmers. The whole idea of going swimming by myself with 4 kids just seemed exhausting and then when you factor in the 113 degrees, the baby that needs extra pedialyte on a constant basis to keep from getting dehydrated, a swimming pool that's probably 95 degrees, and how quickly even "regular" kids can get dehydrated in that kind of heat, swimming sounded more dangerous than it was worth. So yes, it can be too hot to swim.
Much like that situation, it is also possible for progress to be frustrating. For the last 5 weeks since Raya got her GJ tube changed, she's had 400-500ml/day of bile coming out of her stomach. If I left the tube clamped so that it wasn't relieving the pressure & fluid out of her stomach for more than a couple hours at a time, she got really fussy and uncomfortable and we were afraid she would start vomiting again, so we drained her continously and gave her a few short breaks throughout the day. In other words, we had to drain her for 18-20 hours a day in order to keep her comfortable. It's been gross and messy and people stare at her/it and we're constantly paranoid about it getting caught on something and spilling (perhaps because it spilled large amounts 4 times last week in her bed). It was necessary though and we felt like the benefits outweighed the annoyances.
Then the weekend came. I was getting really frustrated with the spilling incidents because 4 times, the bag either came unplugged or the extension tube broke and the entire bag spilled. Every time it happened, she was in bed and woke up screaming and I'd have to get her out and wash her off so the bile didn't irritate her skin, and then clean up the mess out of her bed & the floor. One night, I decided to wait until 5am to plug the drain bag in. It would have been great except that she must have stepped on the bag and unplugged it so bile was running out of the unclamped tube and spilling out of the bag again.
Something similar happened at naptime that day so on Friday night, I decided to leave her clamped the whole night and see what would happen. I fully expected vomiting Saturday morning but she was fine. She woke up around 7 with a poopy diaper and was fussy, so Donny plugged the drainage bag in and I left it on her for an hour. The rest of the day, I did the opposite of what we've been doing. I left her clamped for 2-3 hours at a time and then just drained her for 15-30 minutes and clamped the tube again. By the end of the night, she had only been drained for 6 hours and 45 minutes as opposed to the usual 20 hours. She had drained 290ml of fluid, which was still high but was lower than usual. Yesterday was pretty much the same story. I drained her for a total of 7 hours and she lost 250ml of fluid. Last night, she was clamped from 7pm until 7am this morning and was totally fine. She was a little fidgity and irritable with the other kids this morning but there was no puking. 
In addition to the sudden ability to be clamped for the majority of the day in spite of the 400-500ml of excess bile that is in her stomach, she has also suddenly gone from wanting nothing to do with food to begging for bites of EVERYTHING, letting me put spoons/forks with food on them in her mouth, wanting drinks of water every time she sees a water bottle or drinking fountain, and putting every single crumb she sees on the floor in her mouth. (she still doesn't swallow much of anything) All of it is great progress and very exciting but it is also SO frustrating. After 18 months of miserable symptoms with no real answers, she is suddenly and mysteriously "over it" and she's fine and suddenly WANTS to eat, and we still have no explanation for anything.
I know I'm probably sounding whiny & ungrateful again. I am very grateful for the progress, I just don't understand how she can suddenly and with no apparent reason be fine. It CAN be too hot to swim, and progress CAN be frustrating.

Saturday, June 25, 2011

A little experiment

And no, I'm not referring to the experiment the kids did last week where they put a fly in a bottle of Raya's bile and left it there to see if it would get digested. (it didn't and Cole decided to shake it and spilled on the floor so it had to get thrown away because it stunk up the whole house) I digress.
Anyway, after having 4 big nasty messes this week from Raya's bile drainage bag either coming unplugged or the extension tube breaking off, we decided to try leaving her clamped overnight last night. Every time it broke or came unplugged, she was in bed either at night or for naps. I even tried leaving it clamped until 5am once but between 5 and 7 it drained a huge amount and then came unplugged and spilled on the floor again, so I gave up on that idea. (who wants to get up at 5 to plug in a bile drainage bag anyway :)
We expected to wake up this morning to her puking everywhere but she didn't. She was doing a lot more coughing and loud swallowing than normal, which sounded like reflux to me. Donny plugged in the drainage bag at 7am and within an hour, she had still managed to drain 80ml, which is actually pretty average for 8am. It kind of confirmed my theory that she doesn't drain much, if anything, until the early morning hours when she starts to move around and starts to wake up. 
With that in mind, we decided to do things backwards today and instead of draining her most of the time and only giving her a few hours off, we just drained her for 30 minutes at a time (or less) every couple of hours throughout the day. We drained for a total of 6 hrs and 45 minutes and she still managed to drain 290ml, which is almost 10 oz. A little below her recent average but still high. We've decided to keep doing this for a few days and see how it goes. If she's still going to have the same amount of drainage this way and if it doesn't make her uncomfortable or make her throw up, we would all rather have her only be hooked to the bag for 6 hours a day instead of 20. On the side of caution, I will still be covering the floor around the crib with towels tonight but maybe she'll surprise me and keep doing well with this. Hopefully this is a preview of how she'll handle things when we switch from the GJ back to the G tube next week. Fingers crossed for tonight. :)

Thursday, June 23, 2011

A new level of gross

We have reached a new level of grossness this week. If that's even a word. I'll spare you pictures but be forewarned there will be a lot of discussion of bodily fluids in this post. (I'm writing this mostly for future reference so I can tell the kids, "Look at what I went through for you! You'd better behave, Miss Teenager!" :)
First there was the bile spill on Monday when the G port extension tube broke at 5:30 in the morning and the bag emptied most of its contents into Raya's crib, mostly on and under Raya. Then there was Tuesday. Oh Tuesday. At least that time it wasn't Raya. The big kids went to a movie & to play at the splash pad with some friends and when they got home, Kaida wasn't feeling too good. She didn't feel sick to her stomach but kept saying her tummy hurt & she had a fever so I took her to the doctor. The verdict was a nasty UTI. When we got home, she didn't feel like walking into the house so I carried her into the house. She was crying a little bit and had her face burrowed in my neck. (see where this is going?) Next thing I know, she's hurling all over me. Down the front, down the back, on my feet, on her face, on my neck, in her hair, on her clothes, etc. Luckily, all she had eaten that day was a whole bunch of popcorn at the movie and popcorn vomit happens to be one of the least offensive vomits I've ever cleaned up. It wasn't stinky at all.
Wednesday we got away with just a couple of puddles of stray formula from Raya opening the medicine port on her tube. We were lucky on Wednesday. Oh, wait, there was the time when I went to get her out of bed from her nap and she had unplugged the drainage bag from her G port extension tube. Luckily, the bag stayed upright so it didn't spill but there was still bile running freely out of the extension tube into her bed and all over her shirt.
Then there was today. Today has been the grossest day yet. I woke up this morning to the unmistakeable stench of bile and a very stinky wet diaper from across the room. I didn't even want to get up and look because I could tell it was going to be bad. For the 2nd time this week, the plug end of the extension tube (where the drainage bag plugs in to the tube) had broken off. It wouldn't have been too bad if the bag had stayed right side up but no. It tipped over and poured the entire night's worth of bile onto the carpet. If it had been 2 inches to the left, it would have at least had to soak through a couple layers of blankets on the floor before it hit carpet but that would have been too easy. Going by an average of what she usually has in the bag by that time of day, it was probably about 3 1/2 ounces. Not only that, but since the tube was broken and the clamp wasn't clamped, bile was also running out all over the bed again. It went down the side of the mattress so it missed the waterproof pad and soaked into the fabric mattress cover (it's an Ikea crib). I was going to take the cover off and wash it since there are a few formula spots too but the stupid zipper wouldn't unzip so I just had to hose it off in the shower. That was the easy part. I soaked as much of the bile out of the carpet as I could with the blanket that it missed by a hair and then got out the carpet shampooer. Oh, how I love the carpet shampooer! I cleaned the spot twice and used the hose attachment to suck as much liquid out of the carpet as I could and then waited for it to dry. The good news is there's no fluorescent yellow spot on the carpet but the bad news is that our room still smells like bile (think poop+really really bad breath) and I'm not sure how to get the smell to go away. I'm now seriously considering buying a large waterproof tarp to put under her crib, especially in light of the plans to switch her back to a G tube in a couple weeks. I'm only a little bit kidding about that too. I don't want to have to pay to replace the carpet in this rental house! :)

So the grossness doesn't end there but the next part isn't as nasty. Little Miss Raya decided that she wants to "eat" whenever the big kids are eating. That's GREAT and very exciting and I almost always let her except for when her G port has been clamped for a couple hours & I need her stomach to drain. (don't want it getting clogged with anything she happens to swallow) This week, she wants bites of EVERYTHING, including whatever happens to be on the floor. I've lost count of how many crusty pieces of mystery food I've made her spit out this week. Lucky for her (and me) the big kids are fascinated by bugs right now so if they ever find any (alive or dead) they get rid of them so Raya can't get them.
Tonight, she "ate" some yogurt melts (sorry Dr. Allergy, she wanted them so I gave them to her and we'll go back to avoiding dairy after dinner) and then she wanted something else. I cut up some little tiny pieces of banana and she stuffed them in her mouth. Then she decided she really didn't like them so she spit them out all over the place. I think she's starting to learn the concept of using water to rinse out her mouth though, which is also exciting. She really likes to get drinks of water, especially out of the big kids' water bottles with the pop-up tops. She still doesn't know how to suck on any kind of sippy cup or anything so those work pretty well for her. Anyway, the gross part was when I gave her a cracker to nibble on and then started fixing the big kids' dinner plates. When I turned back around, she had the entire mushed up cracker in her mouth and was grunting for a drink. I told her she needed to spit it out so out this giant glob of cracker mush plopped onto the high chair tray, and then she picked it up and started playing with it like it was play-doh. If her daddy had been home, he would have had to look away.
So yeah, it's gross at our house this week. Add in the 112 degree temperatures and me being too cheap to turn the AC below 83 degrees and there's probably some sweaty stink in there too. That completes my brief summary of why my house probably smells.

Wednesday, June 22, 2011

A little bit of tube humor

A few days ago on the Feeding Tube Awareness facebook page, there was a list of "You know you're a parent of a tube-fed child when..." that we really got a kick out of. Ever since then, I keep noticing things that should be on that list. For example, yesterday Raya's 3 year old sister Kaida wasn't feeling well and it turns out she has a bad UTI. When the doctor told me to make sure she drinks lots of fluids, my first thought was, "Can't I just drop an NG tube in her for a few days?" Before Raya came along, that thought would have never crossed my mind. :) I decided to make my own list, so here it is.

You know you're the parent of a tube-fed child when/if...
  • one of your other kids gets sick and won't drink any fluids or take their medicine and you tell them that if they don't at least take their medicine, you'll have to put a tube in their nose like baby sister used to have.
  • all of the storage furniture you bought to put blankets and other things in is full of medical supplies.
  • your purse is full of syringes, tubing, gauze and medical tape.
  • you hear your child's feeding pump beeping everywhere you go and then realize you're just hearing things because you don't even have your child or their feeding pump with you.
  • the GI nurse recognizes your phone number and answers it even though you were calling to talk to a different doctor's nurse about a different kid.
  • your other kids want to do science experiments with the bile you drained out of their baby sister's tummy. And you let them.
  • you doze off on the couch late in the evening and then wake up and panic at 2am because you missed giving meds & starting the night feed. (lucky for me, Donny picks up my slack. :)
  • your baby's favorite toys are syringes and a stethoscope.
  • there are spots on your ceiling from when you accidentally shot formula out of the syringe.
  • you don't bother buying masking tape anymore because medical tape works just as well and you have plenty of that.
  • you pick up your friend's baby and have a minor panic attack because you can't feel their feeding tube button (they don't have one).
  • you don't want to spend money on squirt guns so you just give the kids 60ml syringes instead.
  • you have used a spare 60ml syringe to baste a turkey.
  • you walk right past the rack of footie pajamas with zippers without even looking at them because there's no way you could put them on your child without having to cut holes in them.
  • you forget to put diapers in the diaper bag because you're too worried about making sure you have all of the other necessary supplies in case of a tube emergency.
  • you feel like it's Christmas every month when the UPS man delivers boxes of formula, extension tubes, syringes, gauze, tape, etc.
  • you have ever held a vomit bag in front of your child's face in a restaurant, airport/airplane, grocery store, or other public place while reassuring grossed out spectators that your child isn't really sick.
  • you've ever felt like kicking random strangers that stare at your child or ask, "What's wrong with her?" (there's nothing WRONG with her, she's a delightful child who just happens to be fed through a tube in her stomach! :)
  • you go out to dinner with the family and people give you odd looks when you keep taking food away from your child instead of feeding her.
  • you have finally been compelled to learn the metric system and now converting mls to ounces is second nature.
  • you've ever thought about making your child a shirt that says, "I have a feeding tube because I vomit and don't know how to eat and no, my mom doesn't know how long I'll have it for."
  • the amount of stuff you have to pack for just an afternoon outing makes it look like you're leaving for a month.
  • you have ever had to show a PCT or nurse how to prime the feeding pump or load the pump set while at the hospital.
  • you have 4 volumes of feeding/medication/vomiting records because in your sleep-deprived state, if you don't write things down you'll forget what you did and when you did it.
  • your other kids are jealous of all the doctor's appointments that your tube fed child has and get really excited when it's their turn to go to the doctor.
  • you hear other moms talking about how they cried when their baby got shots and you have to bite your tongue to keep from saying, "Shots? Big deal. That's nothing." as you have flashbacks of helping to hold your screaming baby down while 3 different people spend 2 hours trying to start an IV on her in the middle of the night.
  • you've ever kicked yourself for not going to nursing school and wonder if practical application would count for any credits if you were to go back to school.
  • you give your child high fives for doing a good job squirting their medications in their tube.
  • you've ever woken up in the morning and NOT smelled formula puke or heard vomiting and panicked thinking something must be wrong.
  • your baby's first discernable word was "backpack" and you're pretty sure she said "blood pressure" once too.
  • you tell your child, "Good job!" and give her a high five when she actually burps out of her mouth.
  • you have ever had to stifle laughter when a well-meaning stranger asks if the feeding tube is an oxygen tube. (yes, we pump milky white oxygen into our daughter's belly :)
I'll stop now but I may add more later. :) Some of the other people's comments on the FTA facebook page were so funny. One girl said that she was at a restaurant and it was time for her baby's feed so she laid him across her lap, took his shorts off, and started to unsnap his onesie so she could get to his tube and a waiter came running up to her and said, "I'm sorry ma'am but you can't change your baby's diaper in the dining area." Another mom said that you know you're the mom of a tube-fed child when your friend hands you her 11 month old and tells you that you can give her a drink of water if you want to and you realize that you don't know how. :) Sometimes you just have to laugh about things!

Monday, June 20, 2011

Trying something new

One of the things that I have always hated about the feeding tube is having to use tape on Raya's skin. I was glad when we moved from the NG tube to the G tube because we didn't have to put adhesives on her poor little cheeks anymore. The skin on her stomach isn't as sensitive to the adhesives as her face was but it still gets sore. I don't know how other people do it, but we tape the extension tubes down really well so the tube doesn't accidentally get pulled out of her stomach. This is how we normally do it (including her crying:)
The top tube is the G port (connected to the drainage bag) and the bottom tube is the J port (connected to the feeding pump). We use 2" wide Hypafix tape, which is a fabric tape that holds pretty well but is still fairly gentle on the skin. It's the best solution we've found so far but still not without flaws. It starts to tear out around the extension tubes and since it does hold pretty strongly, we don't take the extension tubes off when they're not in use. Like, ever. So the valves in the GJ tube wear out faster than they should and I would venture to say that I probably don't clean them as thoroughly as they should be cleaned. I've been looking for something that I could use to attach the tubes to her stomach securely but also detach the tubes when they're not in use without having to rip the tape off every time. Enter the Hollister Tube Attachment Device:
The white ring around the outside is a paper adhesive and the inside is a thick soft adhesive like the Duoderm that we used to use on her cheeks with the NG tube. There's a slit cut in it for if you're using it for something like a chest tube so that the tube can come up through the slit. The long tab sticking out to the right is a zip-tie that goes back through the plastic part on the left.
I went online to Hollister's website and ordered 2 samples. They were really quick and I got them in just over a week. To be perfectly honest, when I pulled it out of the package, my first thought was how big & bulky it seemed. (it's huge!) It sticks out almost as far as a mic-key button sticks out. Since the G extension is the one that tears through the tape more often (due to the drainage bag hanging from it), I decided to try it out on the G port first. I trimmed it down so it's about the same size as the piece of tape we usually use:

I probably could have trimmed it smaller and next time I will. To secure the tube, you clean the skin and let it dry and make sure you know exactly where you're going to put it. Take off the paper backing and smooth it into place. Then lay the extension tube across the plastic part, pull the zip-tie up around the tube, slide it through the opening, and zip it until it's tight a little bit snug but not compressing the tube. (not too tight or it will block the tube) We clipped off most of the extra zip tie so that it wouldn't be in the way, but we wanted to leave enough that we can unhook the tube when we want to. Here's what it looks like up close:

 This gives a little bit better picture of its size. Never mind the bile coming out of her stomach. :)

Speaking of bile, the port where the drainage bag plugs in to the extension tube broke off while she was sleeping this morning so at 5:30, she woke up crying because she was laying in a giant puddle of bile. It was gross.
Anyway, we will see how this Hollister device works out. I still have questions about how well this will work, but I like the concept so we'll give it a try. I'm hoping to try out a couple of other similar products from other companies too.

normal normal normal

I talked to Raya's GI nurse and once again, all of the labs have come back normal. I'm glad this time though since the reason for re-doing the labs was because of elevated glucose. That would have been a whole new can of worms so I'm glad it was normal. She said that the elevated glucose on the first set of labs was likely due to the stress of having the endoscopy. I kind of laughed about that because as far as I can remember, Raya was having the time of her life running around the hospital waiting area & playroom and I was the one that was stressed from chasing her. :) Anyway, this time normal labs are a good thing.
We are going to try putting her back on erythromycin ethyl succinate (aka EES or ery-ped). It's an antibiotic which, when given in low doses, can help increase gastric emptying. So in other words, we're going to see if the EES will help move some of this bile through her instead of having so much drain out of her stomach. It helped a little last fall when she was having the same problem on a much smaller scale so we'll at least try it for the next 2 weeks while her doctor is out of town & see if it helps and then go from there.

We had a family gathering for Father's Day this weekend and it was the first time we've been at anything like that since Raya decided putting food in her mouth wasn't such a horrible thing. Don't get me wrong, I'm glad that she's exploring, but the whole thing was exhausting for me. Between holding her so she wouldn't bulldoze her way through the other kids' plates & cups of juice, trying to eat my own food without her grabbing it, giving her enough "bites" to keep her happy and then catching the food when she spit it out, having mouthfuls of water spewed all over me because she wanted a drink but couldn't swallow it, trying to keep her from putting everything she found on the floor in her mouth, keeping her from getting bites of food she's not supposed to have like dairy products (i.e. cheese on the floor), keeping her from getting run over when she would try to play with the big kids, emptying her drain bag 2-3 times during dinner, and keeping her away from the basement stairs where all the other kids were playing, it was a difficult evening. Before we went (it's a 1 hour drive each way) I had thought about staying home with her because it would have been so much easier, but I wanted to go so we did. We had fun and it was nice for all the kids to get to play with their cousins, it was just another one of those reality checks for me. She's just a lot easier to deal with in our own environment. Here she is with Grandpa:
Like we always say, it's a good thing she's cute. :)

Saturday, June 18, 2011

And now we wait

Raya got to go visit her friend Bobbie yesterday in Drawing Station 1. She was very tough considering how difficult it always is to find a decent enough vein to draw blood out of. We used to see Bobbie outside of the clinic and Raya always had this look of, "I feel like I should know you but I just can't put a finger on it..." Well, as soon as we walked into the draw station & I sat down with her in the chair and Bobbie turned around in her lab coat, Raya remembered where she had seen Bobbie before. :) Then she tried to tie the tourniquette around Bobbie's finger just like Bobbie had tied it around her arm. It was cute in a sad sort of way. :) There were tears shed while Bobbie tried to get the needle to go in but she never really fought to get away like she used to. That in itself is kind of sad too but hopefully she's starting to realize that fighting it only makes it worse.

I don't remember the name of the other labs that they were running but it had something to do with liver enzymes and possibly pancreatic enzymes, and of course the fasting blood glucose test. I'm anxious to find out the results. Mostly, I'm just curious to see if the last high glucose was just a fluke.

So in other news, I talked to the nurse yesterday and she said that the doctor does want to pull the GJ and switch to a G tube for a while, but she wants us to wait until she gets back in town in 2 weeks. I understand that, but UGH! Now I get to sit around for 2 weeks and speculate about what will happen when we no longer have the reliability of the J tube to get Raya's meds in, not to mention running 900ml of formula into her stomach, which hasn't had more than 250ml in it during a 24 hour period since October. I'm trying to think positively, but I just can't help but think that this may be a bad idea.

My biggest question is what if the vomiting starts again? She'll stop wanting to eat again, we'll have to guess whether or not we should re-dose her meds if she pukes them up, we'll have to go through the trial & error of what rate/intervals to feed her & how much to feed with the pump or bolus with a syringe, I'll be doing 235 loads of laundry a day again, our house will smell like Peptamen puke, which I can guarantee you is worse than Neocate puke, and I'll have to start carrying barf bags in my purse again. Or she'll surprise us and tolerate it just fine. Only time will tell. So for the next 2 weeks, these are the thoughts that will be keeping me awake at night. :)

I also asked the nurse about the possibility of doing a separate J tube so she'd have 2 tube sites. (Obviously we don't WANT to subject her to another surgery & recovery and have another tube site to take care of, but if having the GJ insterted through the pylorus may have caused the problems she's having, then maybe having the tubes be separate would help.) The nurse said that having the separate tubes would probably not cause the same problems she's been having but again, that's more permanent (like going from the NG to the G) and that it would be a step in the wrong direction for us. I agree with that, but if we do the G tube for a while and the vomiting resumes and it doesn't go well, then I might just push for separate tubes. It doesn't mean we would have to use the J tube all the time and it doesn't mean we wouldn't still be working towards the goal of weaning her off of the J tube for all her feeds, but it would still give us the security of being able to get her meds in and have them stay in, and the security of being able to keep her hydrated if there's a problem. If she just has the G tube and gets sick or something, even putting pedialyte through the G tube wouldn't keep her hydrated if she throws it up. Well, I'm getting ahead of myself again, but I guess that just gives you an idea of what it's like inside the mind of a tubie mom. :)

Now for something exciting. Last night the boys went to Fathers & Sons outing for church so the girls and I went shopping and then went out to dinner. We went to a very strange restaurant where the food is a fusion of Mexican & Asian. It's good, but interesting all the same. Anyway, Raya was sitting next to me in the high chair and kept pointing at our food and grunting/whining that she wanted some (she doesn't use words, just "uh! uh! uh!" while she reaches towards what she wants). I dipped my fork in the refried/pureed black beans and then gave her a taste. She ended up letting me put about 15-20 little tiny tastes in her mouth for a total of about 1/4-1/2 tsp before she finally gagged & had enough. It was nice to see her "like" the taste of something. I realized when we got home that I needed to take off the drainage bag & flush the G port because the beans were kind of clogging the port from draining gastric fluid. :) She's making progress but still has such a very long way to go. I had always thought that our biggest obstacle was Raya finding the desire to eat but now I'm realizing that there's a huge difference between wanting to eat and being able to eat. The ability and desire to eat enough calories to maintain weight gain is a whole other ballpark! SO yeah, we've got a long way to go but if nothing else, we know where we can find black beans that she'll eat a half teaspoon of. :)

Thursday, June 16, 2011

A new theory

Raya's GI doctor heard back from Dr. DiLorenzo in Ohio. His theory is that having the GJ tube changed could have caused an intermittent intussusception in her small bowel. I know, what is that?? Here's what the Lucille Packard Children's Hospital at Stanford's website says about it:
" Intussusception occurs when a portion of the intestine folds like a telescope, with one segment slipping inside another segment. This causes an obstruction, preventing the passage of food that is being digested through the intestine.
The walls of the two "telescoped" sections of intestine press on each other, causing irritation and swelling. Eventually, the blood supply to that area is cut off, which can cause damage to the intestine."


Sounds gross, doesn't it? Dr. DiLorenzo said that having the tube changed could have caused intussusception, which could be responsible for the backflow of all of that bile into Raya's stomach. He suggested temporarily swapping out the GJ tube for a G tube and running everything through Raya's stomach. (As soon as the nurse told me that, I instantly started planning in my head how I will vomit-proof certain parts of the house.) The thought of yanking the GJ and replacing with a G had crossed my mind but honestly don't know how that would work without the vomiting coming back. 'Twill be interesting. I'm waiting to hear back from Dr. S about whether or not she wants to try going back to just the G. There's also a part of me that wonders if we would have this problem with a separate G and J as opposed to an all-in-one button. Not that I want to subject her to surgery again or have 2 tube sites to take care of. I just wonder if having a tube through the pylorus all the time is causing more problems than it's worth. Kind of like when we wondered if having an NG tube in her esophagus was causing more problems than it was worth. I think the J tube has become a security blanket for me. Having it there means that I can put formula, fluids & meds into Raya and know that they'll stay in and not get thrown up. I think that has contributed to us finally getting her vomiting under control. Since she's not puking them up, they're staying in her body long enough to do what they're supposed to do.
In other news, we'll be doing a 4 hour fasting blood glucose test tomorrow. It's not anything complicated, just have to turn off the feeds & fluids for 4 hours and then take her in to get blood drawn.

Here's some pictures of Raya's first adventure at the splash pad yesterday. I'm a little paranoid about taking her swimming with the tubies still (not to mention that there's 4 kids and only 1 of me!) but the splash pad was fun.

Tuesday, June 14, 2011

Lab results

I got a phone call from the GI doctor's nurse today. She said that Dr. S wants the labs to be redone. (blech) She didn't have all the results in front of her but she said that the doctor wants them to be done over again and that Raya's glucose was elevated so she wants her to do a fasting glucose test. It was about 126 and it's supposed to be between 60-90 for a kid her size/age.
It's possible that the glucose could have been elevated because of whatever IV fluids they gave her during her endoscopy since that's when they drew labs, but 126 was pretty high considering that she had been off of formula for 6 hours and pedialyte for 3 hours before the labs were drawn. She was only on the IV fluids for about 30 minutes total and I don't know at what point they drew the blood for labs either.
And what does it mean that her glucose was elevated? Who knows. It could be a number of different things so first we have to redo the labs & see if the results were just a fluke or if there really is something going on with her blood sugar and/or pancreas. 
The lab tech said that kids normally have to fast for 8 hours before they get the glucose for the test but she and the nurse weren't sure how long Raya will need to fast for since she's on 20 hour a day feeds so we're waiting to hear back from Dr. S about it. Then we'll go back & get more labs done. Good thing we have an AWESOME lab tech who can almost always get Raya's blood on the first poke.

Monday, June 13, 2011

Aaaaaaand: she's normal.

Yes, once again, Raya has confirmed that the tissue in her digestive tract is normal. Dr. S called tonight to tell me that the results of the biopsies from the EGD (endsocopy) last week were normal, as we suspected they would be. She asked how Raya was doing and I told her that she seems to be feeling a little better this week than she did last week but that by 7:30 this evening, she had drained 530ml of bile (about 18 oz), and that was even with having the tube clamped for a couple hours earlier today and then 3 hours this evening after I talked to the doctor. Once again, she said she's pretty much stumped at this point as to why Raya is losing all of this fluid. She asked me if the GJ tube they replaced the broken one with was the same size as the old one, and it is except for one part that doesn't have any effect on the J part of the tube. Since that's the same, she doesn't think the actual tube is to blame.
One issue that could become a problem with all of this bile that she's losing is that she could end up with malabsorption problems where her body would have a difficult time absorbing enough nutrients to sustain growth. (Hmmm...she has had zero net weight gain since January...) I've heard from several other GJ tube parents that their GI doctors have them refeed portions of the bile they drain out of their kids' stomachs, so I asked her if we should try doing that. She said that she doesn't want to do that because when the bile comes out of the stomach, it's contaminated with whatever else is in the stomach and could cause more harm than good. I'm glad she feels that way because the whole idea of it grosses me out. :)
We discussed the possibility of changing the tube again just to see if it would make a difference but before we do that, she wanted to talk to the radiologist at PCH and also email Dr. DiLorenzo at Nationwide Children's in Ohio and see if he has any insights or suggestions. She also said that the pancreatic enzyme labs & whatever other labs they ran hadn't come back yet so she'll call me in a couple days & let me know what those turned up and if Dr. DiLorenzo has anything to offer.

19 months

Oral aversion? What oral aversion? Suddenly, Raya is putting EVERYTHING in her mouth. Especially her old favorite, the toothbrush:
Maybe "suddenly" is the wrong word. It did take her over a year to decide that she can, in fact, handle having things in her mouth. :) She has made some little leaps & bounds in the past 2 months though. We've gone from the struggle of, "Raya, can't you just let me put ONE bite in your mouth? Just one little crumb?" to, "Raya, do you HAVE to put EVERY crumb you find on the floor in your mouth?" Several times a day now, she comes up to me and smiles with her lips closed, which is a sure sign that there's something in her mouth. I usually cringe when I ask her to spit it out because I never know what's going to be in there and I'm afraid next time it will be a dead bug. Or something more gross than that.

Little missy turned 19 months old on Friday. The big kids came home from a birthday party that afternoon with bags full of candy from a pinata. They all wanted to eat candy so I put Raya in her high chair and gave her a dum-dum too. She had a great time playing with it.
Later that evening we went out to eat and she begged for tastes of everything. It's fun to see her try new things, even if she does make yuck faces and spit it all out. She really hated the rice I gave her. It was just plain white rice but it stuck to her fingers and face and she had a hard time getting it out of her mouth and it made her mad. :)

Raya has more words than I expected her to have at this point. She says Daddy, Mommy, Bubba, Kaida, backpack, beep-beep (what she calls her feeding pump :), me, uh-oh, please & thank you (only when she feels like it & we tell her to :), NO!, uh-uh, ta-da!, oh no, yuck, book, and probably a few others that I can't think of at the moment. Most of them are pretty clear but some of them are only discernable when you can see her while she's saying them. Most of the time she just points and whines. :)
 Yesterday at church I had to take her out of Sunday School because she was playing with a bottle and every time she put the lid on it, she would yell, "Ta-da!!!" It was distracting. :)
She's turning into a big girl. Here's a few pics from her 19 month birthday:






Friday, June 10, 2011

Support

Remember a few weeks ago when I was whining about not feeling like we fit in anywhere? Well, it wasn't long after that when I decided to google something about GJ tubes and ended up coming across a blog about an adorable little girl named Allie whose medical history is a lot like Raya's. After I said a little prayer to apologize for being whiny, I emailed Allie's mom. I told her a little bit about Raya and mostly just told her how excited I was to finally come across somebody whose symptoms were similar to Raya's. Allie's family hasn't really gotten much farther than we have in their quest for an explanation, but it was just so wonderful to find someone who knows what this experience is like.
Allie's blog had a link to a website called Feeding Tube Awareness. Since then, I have spent hours reading everything on that website. They have a facebook page where I have finally been able to connect with people of all different backgrounds who are either caring for someone with a feeding tube or have a feeding tube themselves. It has been SOOOOOOOO wonderful!! Anytime someone has a problem with something or needs suggestions on how to handle things, all they have to do is ask on the facebook page and anyone who has an answer can share what they know & what has worked for them. I have already learned a few little tricks and have had people email me to ask me about things we do with Raya. Not only that, but seeing the struggles that other people go through with their "tubies" reminds us once again how lucky blessed we have been at how smoothly things have gone with Raya. Some of these people are facing incredibly difficult decisions with their children and it's so nice to have a forum where there is such a great support system. It is EXACTLY what I had been praying for. For anyone out there who has a feeding tube, has a child with a feeding tube, or is trying to make decisions about whether or not to get one/what kind to get, I would STRONGLY suggest checking out http://www.feedingtubeawareness.com/ and the FTA facebook page. These wonderful people are a wealth of knowledge. It will be more helpful than you can imagine and you can thank me later. :)

Wednesday, June 8, 2011

I think she's trying to give ME an ulcer

Remember when I flew Raya all the way to Ohio for motility testing, catching & cleaning up puke all the way there, and she suddenly stopped vomiting the moment we checked in to the hospital? Well, apparently she's good at being on her best behavior on testing days because today she's right back to her old tricks. When I woke up this morning she had 105ml in the bag, and in spite of having the tube clamped for a total of 7 hours throughout the day (meaning she wasn't draining anything during that time), she still managed to hit 360ml (12 oz).
She also was completely uncooperative for her PT this morning. She wouldn't even let her TOUCH her for the first 15 minutes. I think I might have to get Raya an iPod Touch now too because that finally distracted her enough that she could ignore the stretches the PT was doing with her. That would have been GREAT to have at the hospital yesterday too. :) She had a lot of post-anesthesia/traumatic hospital experience clinginess that made doing things like making dinner & cleaning the kitchen floor a little more difficult. I think it was still better than her last post-anesthesia day though. The doctor said she'd call me when the biopsy and bloodwork results come back and that it should be by Friday or Monday at the latest. In keeping with Raya's history, I'm expecting those to all come back normal too. :) I have been a little surprised at how emotionally draining this simple little endoscopy has been for me. I think it's because I get to a point where I resign myself and make peace with the idea that we may never get the answers we're looking for and that's okay. Then something will come up like this mess with getting the GJ tube changed. Raya ends up having to have tests done, and I'll start to get my hopes up that maybe THIS time they'll see something they haven't seen before or something will finally click and they'll figure "IT" out. Then everything comes back normal (even though it's obviously NOT normal to have 15 ounces of bright yellow fluid coming out of the hole in your child's stomach every day) and I have to start convincing myself all over again that it doesn't matter if we ever get the answers we want as long as Raya is continuing to grow & develop and be healthy.
Sometimes I think to myself, why are we even still digging for answers? Why keep doing tests that we've already done before? I guess the answer to that is that it's only natural to want to know everything. That's just the way God made us. We have an innate desire to learn and solve problems and it's frustrating when there's a problem that we can't solve on our own or with help from other people. But, like I said, whether or not we ever find out what has caused all of the symptoms Raya has, the most important thing is that she is continuing to grow and develop and have the best possible quality of life in spite of her circumstances.
Part of that is making sure that our family's world doesn't revolve around her "problems". For example, I felt so bad yesterday when I realized that because of Raya's endoscopy, Ashtyn missed her activity day for church because I had to take the kids to their cousins' house and we didn't get home until an hour after it was over. We can't be in 2 places at once and obviously some things are more urgent than others. It's hard to make that separation, especially when so much of our schedule is dictated by her therapies and doctor's appointments and just by the day-to-day aspects of her care that are different from a baby without a feeding tube. I am definitely trying to be more conscious of that though. There is a fine line between making sure that her special needs are met and not participating in life because it's just easier not to. Does that make sense? Well, anyway, I think Raya and I are both on our way to getting over this endoscopy and moving on with life. Hopefully we won't be doing that again anytime soon.

Tuesday, June 7, 2011

EGD/endoscopy results

What a long friggin' day. This morning, I woke up and realized that the extension tube on Raya's gastric port was clogged so her stomach hadn't been drained the whole night. I thought for sure she'd be puking any second but she never did. She was acting funny though, like she was really high-strung and couldn't relax. I decided to put her in the shower, which she normally loves, but as soon as I put her in, she freaked out and was screaming and trying to get out (and no, the water wasn't too hot). It was very strange. After the shower, I changed the tubes and instantly she started draining bile. After a few minutes of draining, she was back to her normal happy self. That little experience just once again shows that there is a very strong correlation between Raya's GI symptoms and her sensory issues.
We left the house at 10:30 this morning (we being me and the 4 kids) to take Raya to OT. Halfway through OT, the bile drainage bag decided to spring a huge leak so bile went everywhere. I couldn't figure out where it was coming from though. Once OT was over, I took the 3 big kids to their cousins' house to go swimming & play until Raya & I got back.
When we got to the hospital, Raya looked like this:
I waited until I only had 2 minutes before we were supposed to check in to get her out because I knew as soon as I opened the car door, naptime was over. It was about then that I realized I had forgotten to bring a stroller, so we were hoofing it. Wouldn't have been so bad except that the new admitting area is about as far as it possibly could be from pre-op/endoscopy. Then halfway through the parking garage, the stupid bile bag started leaking again so I had to unplug it and clamp the tube. We checked in and the real fun began. :) How do you entertain an 18 month old for 2 hours? (perhaps the real question should be why the heck they make you check in 2 hours early):

Take pictures of yourselves so you can show them to her
on the little screen on the camera.

Pretend the hospital pager is a cell phone and then steal Mommy's phone out of her pocket so you can talk on both at the same time. Then run around admitting trying to steal other people's hospital pagers, car keys, etc.

Find a paperclip on the floor and try to poke it into the little holes on the pager.


Play Alvin & the Chipmunks and Mario on the DS, which is apparently not nearly as fun for an 18 month old as it is for a 6 year old.

Wear a barf bag on your head. Don't worry, it's never been puked in.


Plug syringes into your extension tube ports.


After Mommy finally flags somebody down to see if they're ever going to come out and get us and then finds out that even though Admitting knew we were coming, Pre-op had no idea we were there, you get weighed & measured and put on hospital clothes. Then clean your face with half a package of wipeys while the nurse asks Mommy the same 20 questions multiple times.
 It was not our best outpatient procedure experience. Now that they moved Admitting to the new building, they check you in and then send you to the opposite end of the hospital to sit in a little waiting area. That would be fine except that the doors to pre-op & radiology/echo/cath lab are all secured doors and there's no phones to call in and let anybody know you're waiting. After we had been there for an hour, somebody finally came out of the door and I asked her to go in and see if anybody was going to come for us. It turned out that since we got added to the schedule yesterday, Pre-op had no idea we were there. If I'd had the energy to be mad about it, I would have. By then I was worn out from 90 long minutes of trying to keep Raya out of trouble. Blech.
Anyway, they finally got us in and prepped for the procedure and the doctor came in to talk for a few minutes and then I walked her in to the room and held her for a minute while the anesthesiologist got ready for her. The nurse untied the hospital gown so the knot wouldn't dig into her back and Raya took that as a cue to rip it off and throw it on the floor. :) Poor kid thinks anytime she's in a medical facility she's supposed to take her clothes off. :) I put her down on the bed & the nurse covered her up with a warm blanket and the anesthesiologist put the mask on her and that's when I left. It was a little creepy. They don't usually even have me come in the room so it was a little strange that they did this time, let alone have me stay in there until he was ready to knock her out.
So without further ado, everything looked normal. Go friggin' figure. I have now used the word "friggin'" twice in one post. That should be a clue as to how I feel about it. Friggin' friggin' friggin'. I shouldn't be surprised that there's nothing abnormal in there. There's NEVER anything abnormal and I'm getting SO sick of things looking normal when there's obviously a problem. Dr. S said that all her tissue looks healthy and there were no obstructions and there's plenty of space where her tube goes through the pylorus into the small intestine. She didn't see any inflammation either. She said that the only slightly abnormal thing she saw was that the ampulla (the duct where bile enters the duodenum portion of the small intestine) is closer to her stomach than normal. She said that usually the ampulla is farther away from the stomach than Raya's is and that the tube was resting against the side of the ampulla. That might be insignificant but it's the only thing out of the ordinary that she saw. So once again, I feel like we're beating our heads against the same old brick wall. It's obvious that something was going on in her little body but even going in with a scope didn't turn up anything. Dr. S did take biopsies though and she had them do labs while Raya was under so they can check her pancreatic enzymes and make sure that losing all of those fluids for the last 3 weeks hasn't thrown off her body chemistry (electrolytes, etc.). If all of that comes back normal too I might have to kick something. (But not with my right foot because Raya chucked a can of El Pato sauce at it when we were at the grocery store yesterday and the edge of the can landed right on the joint where my big toe hooks to my foot and it really REALLY hurts.)
So after all of that, she once again woke up from anesthesia screaming and freaking out and trying to rip the IV out of her hand. I did get a good laugh when the male nurse came to the waiting room to take me back to recovery though. He told me that Raya was upset and that she was probably just hungry. I tried not to laugh out loud when I told him that she has no idea what "hungry" even is since she hasn't eaten orally in over a year and gets all her feeds through the J tube. :) I took my little angry animal back across the entire friggin' hospital and back to the parking garage feeling exhausted, dejected, almost in tears and somewhat wondering why we even do tests on her anymore because they always turn up NOTHING. Then I reminded myself that ruling things out is just as important as diagnosing things, it's just way more annoying. See, doesn't Raya look annoyed?
On the bright side (albeit annoying as well), her G tube drainage slowed down drastically today for no apparent reason. Hopefully the endoscopy shifted the tube enough to stop irritating whatever it was irritating and the drainage will just go back to normal now. I guess that would make the whole unpleasant experience worth it.

Monday, June 6, 2011

GI visit today, EGD tomorrow

We had a pretty dull & uneventful GI visit today. I thought there would be more to it after the way things have been the last 3 weeks. Today Raya weighed in at 23 lbs 2.9 oz, so she's up 3 oz from Thursday. I think it's because her pump was off for 3 hours before she got weighed last time but it was running all day today. Interestingly enough, I was looking back at her previous weights and on January 3rd, she weighed 23 lbs 5.4 oz. Hmmm...no net weight gain in 5 months...
Dr. S asked me today if I wanted to switch Raya back to her previous formula (Neocate Jr.). I don't. I said no, that I didn't think that was a good idea and she said she agrees because GI-wise, Raya has done so much better on Peptamen Jr., even if it does give her eczema. You win some, you lose some. She offered to refer us to dermatology but I politely declined, mostly because I'm feeling maxed out on appointments right now. :) I didn't tell her that my favorite thing about switching to Peptamen is that all I have to do is pop open cans rather than actually have to use my brain to calculate powder vs. water, mix it, etc. Lazy, perhaps, but canned formula has been SO nice. :)
We went through the usual stuff: meds, feeding schedule, frequency & consistency of poopy diapers (must be fun asking people about poop all day long), frequency of wet diapers, and last but certainly not least, bile drainage. She asked what happens if I leave her tube clamped for more than a couple hours at a time and I told her I don't do that because I'm afraid that she'll start throwing up again, and because Raya gets really uncomfortable after an hour or 2. Then when I unclamp her, 1 or 2 hours' worth of fluid gushes out. So yeah, I don't leave her clamped for more than an hour or 2.
Then she read me the radiologist's report. Normally I pay really good attention and take notes but today most of it went in one ear and out the other. I was kind of in a funk. She said that there was thickening of the folds of the duodenum and pylorus (I think) that could indicate an ulcer, but the radiologist didn't see anything that looked like an ulcer. There were no obstructions, no hernias, no blockages, etc. etc. So as usual, mostly normal. She asked me if we wanted to try and squeeze in an endoscopy tomorrow or Friday or if we wanted to wait & see how Raya does while she's out of town the next 2 weeks & then do it when she gets back. In my most polite voice and with the nicest words I could get out of my mouth, I told her that I've been "waiting to see" for the last 3 weeks and I'm kind of tired of waiting to see if things change on their own. Nothing's gotten better, and she's losing weight and draining more fluid than a kid her size should drain, so I want to get it done sooner than later. Luckily, the nurse had set aside a time for us tomorrow at 4 just in case Dr. S wanted us to have it done tomorrow. I totally owe her. :)
In case I haven't said it before (I'm pretty sure I have) I love her GI doctor. I appreciate the fact that she asks me questions and actually takes my answers into account, and we make a lot of decisions together rather than her just telling me what to do. Sometimes I feel like I'm a little obsessive about things, like how many emails I sent the nurse in the first week or 2 of this excessive drainage problem. When the doctor said something about having read ALL of my messages about it, I got a little embarrassed but she said she was glad I had sent the emails and that it helps her "immensely" and I shouldn't feel self-conscious about that. Anyway, I just appreciate the fact that she talks to me like I'm an intelligent person that's capable of understanding what she's talking about.
Aside from all the nitty gritty stuff, Raya was just as charming as could be while we were there. I used to bring her in in the stroller because it was easier for me but now if I try to do that she just squawks the whole time. The last few times we've been there, I bring her in and strap on her backpack and just let her run around the waiting room. She loves it, especially because people usually talk to her and tell her how cute she is. Today she was walking around like she owned the place. They had the door from the waiting room to the exam room area open and she kept saying, "Raya! Raya!" and then walking back to the exam area like it was her turn. I guess she knows the drill. :) Her nurse wanted to hear her say "backpack" but she wouldn't do it. Maybe next time. :) It was kind of tiring chasing her around and keeping her out of things the whole time we were there but thank goodness we've moved past the stage of crying and screaming the whole time and then throwing up.
So tomorrow we'll go explore a little bit more of the brand new addition to the hospital and Raya will take a little drug-induced nap so they can put a camera down her throat & take tissue biopsies while I play a few rounds of scrabble on the DS and try not to feel guilty about my sister-in-law whose husband has been out of town for over a week watching my other 3 kids plus her 4 kids. Sounds like a fun day to me. :)

Rough day for Raya


My girl had a rough day today. It started out fine but halfway through the first hour of church, she started to get wiggly as usual. I took her out so I could refill her feeding pump and try to get her to go to sleep like she's been doing. We started doing laps around the halls like we normally do and I thought she was starting to fall asleep at one point. Then the screaming started. She cried and screamed and squirmed for about an hour. Nothing made her stop, not even going into a quiet room and laying her on the floor. She was doing a lot of reflux swallowing and there were a lot of times when she stopped crying for a minute and then suddenly would scream and stiffen up and arch her back and cry. I felt bad for her. It didn't help that there were a lot of people around who kept walking past us and looking at her and saying things like, "Oh, looks like somebody's not happy." Or they'd touch her arm/leg/back (which she doesn't like) and say something to her. One lady walked past us and looked at us and then got a really smug little smirk on her face when she was walking away and I just wanted to kick her. She's walking past me probably judging me because my toddler seems to be throwing a tantrum, but really she's crying in pain because her intestines are inflamed and she might have an ulcer. People.
Anyway, Cole was giving a talk in Primary so I needed to stay for that but as soon as he was done, I took Raya to the car. The poor girl was on total sensory overload at that point (from aforementioned people who probably meant well) and as soon as we walked out the door of the church, she stopped crying and laid her head on my shoulder. Before we even pulled out of the church parking lot she had fallen asleep in her carseat. I brought her home and put her on a blanket on the floor in the living room and she didn't move a muscle until I had to get her up to go pick up Donny & the kids from church.
She felt better after her nap. She's had less drainage today but most of it has been a dark green color, which (I think) means it's been sitting in her stomach longer. Funny thing about bile, after it sits around for a while (like if I empty her bag into a bottle to measure it and then forget to dump it out for a while) it turns green. Anyway, she's hardly had any this evening which I suppose is a good thing. Who knows at this point.  When I changed her diaper tonight, she was laying on her back and her stomach was completely flat and maybe even a little sunken in, and her stomach has never been like that. She's getting skinny. Something's going on inside that little tummy. Looking forward to seeing the GI doctor tomorrow.

Friday, June 3, 2011

What we're doing about it

I just got a phone call from Nurse R. She said that Dr. Y (the radiologist) sent his report over and said that there was some possible thickening of the folds of the duodenum near the pylorus (i.e. small intestine where it connects to the stomach) that could be caused by an ulcer. (can't imagine why she'd have an ulcer with 500ml of excess bile coming out of her every day...) It's possible that there was already something there and having the GJ tube changed aggravated/inflamed it. She's going to need to start taking carafate (an ulcer med) every 6 hours on an empty stomach. Conveniently, we just happen to have a bottle of that from last fall when she was bleeding from her stomach. This time it will be a lot easier to give it to her on an empty stomach than it was before since she's not on 22 hour/day gastric feeds. :) Now I just have to decide what time I want to get up in the middle of the night to give it to her. :)
In addition to the carafate, Dr. S. wants to see Raya on Monday and wants to do an EGD (esophagogastroduodenoscopy, my favorite GI-related big fancy medical word :) next week. The upper GI showed that there is a problem but it doesn't show detail like they're able to see in an endoscopy. I might beg them to give her a little versed before she wakes up from the anesthesia so she won't be like a little wild animal this time. She was pretty crazy last time. (see here)
I jinxed myself about 10 minutes before the nurse called by looking at the calendar and thinking to myself, "Wow, we only have 3 appointments on the calendar next week!" Why do I keep doing that?!? :) It's okay though, I don't mind. Now I feel funny if we DON'T have 3 or 4 appointments in a week and I completely lose track of what day it is if we don't have the regular appointments. :)

Thursday, June 2, 2011

Upper GI and weight check

Raya had yet another upper GI today to see if there was a visible cause for all of this bile drainage. Pessimistic Mommy figured it would come out normal like most every test we do. Optimistic Mommy thought that maybe this time we would be able to see something wrong that would explain the problems she's been having. I'm not totally sure who won. For now I'm calling it a tie. The test wasn't totally normal but I don't know how easy it will be to fix either.
*In case you don't know what an upper GI is, it involves the patient ingesting barium either by swallowing it or having it injected through a feeding tube. The radiologist does a series of x-rays as the barium goes down & moves through the digestive tract. It can help detect a lot of different conditions like structural abnormalities, growths, hiatal hernias, reflux, etc.*
Anyway, the radiologist said that he could see some inflammation in her small bowel where the tube is, and that the inflammation is probably what's causing the bile to back up in her stomach. What we will be doing to fix that I have no idea. The radiologist was going to send his report to her GI doctor and we'll go from there.
She's lost another 4oz since last week too so she's down to 22lbs 15 oz. She's lost exactly 1 pound in the last month. Again, not sure what we'll be doing next but hopefully we can fix the intestine issue and then the weight will start going back up on its own. So that's it for now. I'm pretty sure all the progress we've made recently with how well she behaved at appointments went down the toilet in the 20-ish minutes we were in the radiology room. :) The minute the x-ray tech came towards her with a hospital gown, she was done. She screamed and fought us the whole time she was under the x-ray machine. I always tell her that if she ate food, I would take her out for a treat after unpleasant appointments like that one. :)

Girlfrien' was happy as could be BEFORE the upper GI :)

Big huge thing of markers all to herself, little tables & chairs, no backpack or drainage bag, and no big brother & sisters! :)
 
She pouted all the way home though. Who could blame her, right?

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