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Showing posts from June, 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 t…

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 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 ta…

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 t…

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, whi…

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 th…

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 ot…

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 exten…

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 fal…

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 s…

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…

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…

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 bil…

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…

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…

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 th…

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…

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 P…

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 h…

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 se…

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 pro…