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Showing posts from September, 2010

Why do I get so excited about abnormal test results?

Maybe excited is the wrong word; maybe relieved would be a better one. Not that I'm excited that there's something wrong with my child, but it's very exciting when the results of a test confirm what we already suspect (know).
First off, she had an upper GI. Typically they would have her drink barium out of a bottle or cup and then watch to see where it goes. The reason we did it today was to rule out a hiatal hernia, which we saw no sign of during the scan. The radiologist did keep saying, "Oh, there goes some reflux... There's some more... Oh, she's refluxing again." We saw it at least 4 or 5 times in a scan that lasted less than 10 minutes when all she had in her stomach was half an ounce of barium. So again, Mommy's not crazy, she really does have "significant reflux".
After the upper GI, they flipped the x-ray table on its end and put a little foam seat on it so Raya could have her 2nd Modified Barium Swallow Study (MBS). The first one ba…

I need a do-over, please

**Alternate title: Read this post if you want to feel better about yourself**

Wow, the last 24 hours have not been my best work as a mother. It started yesterday afternoon when I turned off Raya's feeding pump when she had about 3 ml left of a 275 ml (5 hour) feed. She had thrown up all over her physical therapist and since she was almost done anyway, I just turned it off to give her a break. I turned it back on at 12:30 to start feed #3. About 4 hours later, the medicine port on the extension tube popped open and more brown coffee-grounds-looking crud started coming out and it was then that I realized that I had forgotten to reset the pump when I started feed #3. The pump that we used to have would beep when a feed ended but the new one doesn't, so she got about 3ml and then got nothing for 4 hours. Strike 1 for Mommy.
Later that evening, I put her in bed and after I had given her the 11pm dose of her ulcer medication & started her 11:15 feed, I went to bed. My alarm went…

No news is no news

I called the GI doctor's office today since I hadn't heard from her yet. I talked to the nurse & told her what questions I had for her to relay to the doctor. I asked her if she knows whether or not the doctor still wants to go ahead with the GJ tube and she said that she hadn't discussed Raya with the doctor yet so she really didn't know what the next step in the game plan is yet. She did say that Raya needs to have a GJ or J tube though and that the only way to do that is to do another surgery. Of course the doctor could come back & say something different but I'm mentally preparing myself for the next surgery anyway and trying to figure out when the best time to do it would be. Is there such a thing as a convenient time for surgery though? I've already decided that next time I'm packing more clothes just in case and that I'm going to put my foot down about the feeding schedule since that caused problems for her last time.

Bye-bye Mr. Bard, Hello Mic-key!

Old tube:

New tube: 

I didn't call the GI doctor today because I was kind of expecting that she'd call me but she didn't, so I'll call her office tomorrow. I'm anxious to hear what she has to say about the radiologist not being able to do the GJ tube.

An unfortunate anatomical roadblock

Nothing ever goes as planned with this child. My understanding of today's events was that we'd do an endoscopy, remove the old tube, take her to radiology while she was still asleep and put in the GJ tube. Didn't happen that way though. I knew we'd be there longer than expected when I mentioned the words "G tube change and GJ tube placement" to the nurse in pre-op and she looked at me and said, "Oh, that's not on the schedule." Fortunately, Raya was happy most of the time we were in pre-op:

Long story short, radiology had no idea we were supposed to be doing the GJ tube and GI pre-op had no idea we were changing the G tube. Because of the confusion with radiology, we were half an hour late starting the endoscopy. The endoscopy went well. Turns out there's not a tear in her esophagus or an ulcer. Remember how gross her granulation tissue looked on the outside? Well imagine that x10 & that's what the inside looked like. Because the …

What's an endoscopy?

My apologies for not explaining what an endoscopy is. Here's the Wikipedia definition:
Endoscopy (pronounced /ɛnˈdɒskəpi/) means looking inside and typically refers to looking inside the body for medical reasons using an endoscope (pronounced /ˈɛndəskoʊp/), an instrument used to examine the interior of a hollow organ or cavity of the body. Unlike most other medical imaging devices, endoscopes are inserted directly into the organ. Endoscopy can also refer to using a borescope in technical situations where direct line-of-sight observation is not feasible.

Here's a link to a more detailed description of how an endoscopy is performed.

Raya is having it done so that the GI doctor can find the source of the blood that's been coming out of her the last couple of weeks (ulcer, tear in the tissue, etc) and make sure there's nothing serious. While she's under anesthesia, they'll pull out her old G tube and put in a different one that actually fits (I HOPE) and place the GJ …

Hospital, here we come

I'll be taking Raya back to the hospital in the morning for her endoscopy, button change, and GJ tube placement. It's supposed to be an in & out thing but you can bet I'll have my "just-in-case" bag packed & in my car. :) Crossing my fingers that all goes smoothly & she does better with everything this time than she did last time!


Donny's grandpa always calls his great-grandkids "bigga-nuff" (not sure how he would spell it but that's my interpretation :). I think that's easier for him than remembering the names of all 75 or so of them. :) Anyway, lately Raya is getting so big that whenever I look at her, I can just picture in my mind Great-Grandpa K saying "Hey Bigga-nuff Girl!" to her.
On Friday, she stood up next to me (read: climbed up Mt. Mommy) while I was sitting on the floor and then let go and stood there for a couple of seconds before slowly sitting down. She did it a couple more times Saturday & Sunday. It's looking like she'll be our only 20+ lb 1 year old AND our only one to walk before a year.
Not super excited about how easy it's getting for her to get into everything though. We've learned the hard way that if she finds a piece of paper or ponytail holder on the floor, she will put it in her mouth and then throw up because she doesn't know how…

Spoke too soon

The blood is back. Surprisingly more disgusting than last time too and there's more of it. The doctor is out of town though so we'll have to wait & see what she wants to do with this girl. I'm tentatively penciling in an endoscopy for Tuesday but won't know until after the weekend. Just when you think you have a kid more or less stabilized...

**Afternoon Update**
So after I typed that, the GI doctor called me. She's out of town and she's never called me during the day before so I was a tad surprised to hear from her. She's concerned that there may be an ulcer near the G tube site and wants to check it out. Raya asked me to let her feeding therapist know that she'll have to reschedule their appointment on Tuesday because she's going in for an endoscopy instead. (Seriously, sometimes I feel like I'm just her secretary/chauffeur!)
Since we'll be 7 weeks post- G tube placement at that point, she'll change the tube at the same time so we ca…

New medicine=Less sleep for Mommy but no more blood

All in all, it's a great trade-off. Her new medicine must be working, hence no more brown vomit or copper-colored fluid dripping out of her G tube and ruining her pretty pink pants & staining my bathroom rug. The only down side (for me, totally selfish, I know) is that she has to have it on an empty stomach every 6 hours. Not that her stomach is EVER empty, but this is the best we can do. She's on for 5 hours, off for 45 minutes, gets her medicine, waits 15 minutes, and starts the next 5 hour feed. We do this cycle 4 times in a 24 hour period. I had gotten very spoiled with plugging her in at night & having her be good to go for the next 10 hours and I've had a hard time adjusting to having to get up 3 times in 1 hour around 4:30 a.m.

She's had a less-than-great couple of days. Her reflux is out of control all of a sudden. Luckily she's still able to sleep fine at night (other than waking up at 4:30 the past few nights in a row to throw up) but during the d…

New Pump #3

Raya got a present from the home health company today. Remember how I said that one of the things I don't like about the Infinity pump is that the door is on the front so it's not very protected? Well, it's had a little crack in it for a few weeks and the little crack turned into 2 little cracks yesterday. The door wouldn't stay closed anymore and if the door isn't shut, the pump won't run. Big problem for a kid who's on the pump 20 hours a day! Luckily, holding it shut with a rubber band worked temporarily while we were waiting for the manufacturer to send us a new door. Home health surprised us today by bringing us a brand spankin' new pump though and I'm pretty excited about it. Sad, I know. :) As much as I love the adorable little backpack that her pump came in, I really want to make a new bag that would protect the pump a little bit more than the current one does. In all my spare time. :)

So the GI doctor called me back last night to tell me th…


This. Is. Gross.

Um, yeah, when stuff that looks like that comes out of your kid's stomach, it's probably a good indicator that she has a problem. The picture makes it look more red than it actually was. It was more of a copper color. Either way, not normal. I dropped off her specimens at the doctor's office this morning & we shall see what they have to say about it.

**Afternoon Update**
So when the doctor saw the samples I took in this morning, she had her nurse call me back to tell me that it's definitely blood and that I needed to bring her back in 45 minutes for labs & a quick visit with the doctor. I hurried & called a friend to see if Kaida could come over & play so I didn't have to try to keep her out of trouble while Raya got blood drawn. My friend happened to be at Walmart waiting for her car to get its oil changed so I dropped Kaida off at Walmart. How WT is that. :)
Okay, anyway, the doctor said that Raya probably has a small perforation/tear…

10 Months and the Saga of the Brown Liquid Continues

Raya turned 10 months old on Friday. We took Kaida to play with her cousin-friend Kennedy while Raya and I went on a LONG drive to her appointment with the Anat Baniel Method (ABM) lady. Raya got a nice long nap since it was 60 miles each way and I got to sing along to the radio as loud as I wanted because Kaida wasn't there to tell me she didn't want me to sing or that she didn't like my music. :)
She had a great time at the appointment again. She just plays with toys the whole time and I think for the most part she's totally oblivious to the lady working on her. It's kind of cool to watch her play though because you can tell when the lady is able to free up more range of motion for her. If that makes sense. (If you want to know more about ABM you can check out the website of the lady who developed it and the website of the lady we see. There are videos that show what a therapy session looks like & information about the method.)

It could just be the fact that I…

Feeding Therapy: Brought to you by Costa Vida

Yesterday Raya had what was probably her best "food interaction" yet. I dumped a puddle of pureed squash on her tray (sounds appetizing, I know :) and let her go at it. Once she started to play in it, I got out one of the plastic spoons I...acquired from Costa Vida the day before. She had expressed interest in the spoon so I brought home a couple of extras. I'm sure they wouldn't mind. :) Instead of trying to feed her anything like I usually do since she's made it quite clear that I'm not welcome to put things in her mouth. I just stayed out of her way and let her be alone with her food. :)

She had the time of her life! I'm not kidding when I say that I stayed away from her. I didn't touch her or the spoon or high chair and the only time I got within 2 feet of her was to dump the other half of the jar of squash on the tray. The rest of the time I was in the kitchen pretending not to see her. It was hard to stay away though because after the struggles …

Pros & Cons: Kangaroo Joey vs. Zevex Enteralite Infinity

For about 4 1/2 months, we used the Kangaroo Joey feeding pump by Kendall. There were a lot of things we liked about it and a few things we didn't like. When Raya got more mobile, it became necessary to switch to a more compact & mover-friendly pump, the Enteralite Infinity by Zevex. Here are the things we liked & didn't like about both pumps.
Kangaroo Joey Pros:
*Fairly easy to program *Large well-lit screen *IV pole clamp has a place to wind the cord around it
*The "Prime Pump" button primes the line really quickly
*The adaptor plugs (at the end of the pump bag tubing) stay plugged in to an NG tube better than the ones for the Infinity pump
*The alarm has a volume control that is easy to find
*There are still a couple hours of battery life after the low battery warning starts beeping :)
*Has several different language options
*The backpack we had for it had a flap with a see-through window that allowed access without having to open the backpack
*All of the programming …

Mommy-1 Granulation Tissue-0

Remember that nasty granulation tissue? Well look at it now:

Almost gone!! I'm SOOOO glad it's going away. Every time the gauze around it gets moved or the tube gets jostled, the granulation tissue bleeds a little bit and I think the bigger it got, the more uncomfortable it made her.
So here's what I think is making it go away. First, we've treated it with silver nitrate 4 times now. That made a huge difference and started getting it to shrink. (Side note, I think those thin brownish marks on her skin around the tube may have been a result of me not doing a good job with the silver nitrate sticks. You're not supposed to let it get on their skin and it looks like I did. Oops, sorry Raya!) Second, I increased the amount of gauze I was packing around it. We started out right after surgery with 1 packet of gauze. As soon as we started feeding her full amounts, that no longer worked so we went to 2 packets. That stopped the leaking, so we stuck with that for a little whil…

Signs of Growth and More Yucky Granulation Tissue (Thurs 9-2-10)

You know your kid is growing when you refill their Prilosec and they upgrade you to the jumbo-sized bottle:

Reflux is not funny but the giant bottle totally made me laugh. We had a little glitch in getting the new prescription filled so she went for a day without it and that pretty much confirmed that she still needs it. :)

*WARNING: Gross picture ahead!!*
So the granulation tissue was doing a lot better after she had it treated by the surgeon at her follow-up & by the GI doctor at her check-up last week. It had lightened in color and gotten considerably smaller. Then she had a really violent puking session Saturday night and when we checked it Sunday morning it was huge. As in, sticking up above the height of her button huge. We treated it with silver nitrate that morning and it helped a little but it was still huge. I took this picture right before we treated it again Tuesday night:

We're supposed to be getting some medicated pads from home health to put on it but they weren&…

Kind of a blah day... (Thurs 8-26-10)

Alternate title: Long boring post with no pictures.
Normally I LOVE cloudy days but today was kind of cloudy in a figuratively speaking way. We started off the day by having to make a mad dash to get the kids to school on time because a certain 2nd grader decided she would wear flip-flops to school in spite of Mommy & Daddy's no flip-flop rule and Mommy cracked the whip & made her change. Really, it was nice of me to make her change. Next time I'll just let her wear the flip-flops & not get to participate in PE. So that wasn't a great way to start off.
When we dropped the kids off at school, I realized that I hadn't put cotton balls in Raya's diaper (she was getting labs done today & needed a urine specimen & that's the easiest way to get one from a baby) so we stopped at home to get some, only to find that we have none. Strike 2.

I had been looking forward to today's visit with the GI doctor ever since I talked to her on the phone last …

Surgery follow-up & my big fat oops (Wed 8-25-10)

Raya had a follow-up appointment with her surgeon yesterday. He says everything looks good & is healing well. The granulation tissue is an unfortunate side effect of having a tube that's too big. He put some silver nitrate on it though and there's a big difference beween how it looked yesterday and how it looks today. He meant to send some home with me so I could keep treating it but he forgot & I forgot so hopefully I'll be able to get some.

We also set a date (Oct. 4th) for taking out the tube she has in right now (a Bard button) and switching to a Nutriport button. This will (hopefully) make our lives a little easier for a few reasons.
#1-The extension tube that plugs into a nutriport button clicks in & locks in place and then also has a plastic cover that slides over the top to further prevent it from coming unhooked & leaking. The Bard has NOTHING to keep it from coming unplugged, hence the excessive amounts of tape we have to use to keep it in.
#2-The n…

She leaks like a...Like something that leaks a lot (Sun 8-22-10)

**WARNING: Gross pictures ahead!!**

So my girl has a leaky stomach still. While I am still grateful that we're not doing the NG tube leakiness anymore (and everything else that goes with the NG tube), I'm also counting down the days until we can do something about the G tube leakiness. For example: yesterday I turned off Raya's pump & unplugged the extension tube from her G tube so I could clean it. (She's on a 23.75 hour feeding schedule & the extension tube gets pretty cruddy, so I clean it a couple times a day.) There's a backflow valve in her G tube that's supposed to keep it from leaking and I know some of the leakage was coming from there (maybe the valve is stuck open from being used around the clock??) and a lot of it was coming from around the tube still. Anyway, I was gone for less than 5 minutes and when I came back, her shirt looked like this:

The top of her diaper was wet and formula was literally dripping out of her stomach & leaving a…

The Little Things (Wed 8-18-10)

Most of the time when I get email forwards I delete them without reading them. (no offense if you send them to me :) I got one this morning from a dear friend that I haven't seen in a few years and actually read it. I have no idea whether any of it is true or not but I've been feeling pretty down lately about my inability to keep up with the housework, let alone dig myself out of the mountains of clutter that have been accumulating, and this kind of helped put things back in perspective:

The Little Things
As you might remember, the head of a company survived 9/11
because his son started kindergarten.
Another fellow was alive
because it was his turn to bring donuts.
One woman was late
because her alarm clock didn't go off in time.
One was late because of being stuck on the NJ Turnpike
because of an auto accident.
One of them
missed the bus.
One spilled food on her clothes
and had to take time to change.
One's car
wouldn't start.
One couldn't
get a taxi.
The one t…

At least they're happy, right? (Tues 8-17-10)

He needed a breathing treatment, she needed to have a "positive food interaction" with bananas. Neither one was interested in what they were supposed to be doing.

Oh well, at least they were happy.

Where have the last 9 months gone?? (Fri 8-13-10)

Miss Raya turned 9 months old on Tuesday. I've said it about every single one of my kids every time they hit another month mark or birthday, but I can't believe we've had her here for 9 months already. Possibly because of how crazy her little life has been over the past 7 months but also just because we love her so much and it's hard to remember what it was like around her before she was born. I remember telling myself to appreciate the calm & quiet moments before she was born because life certainly wouldn't slow down after #4 came along. Little did I know. :)
So here are a few fun facts about Raya at 9 months:

Her favorite toys are medical supplies, i.e. stethoscopes, any kind of tubing, wrappers from the gauze we use on her stomach, and syringes, the bigger the better: If she could talk right now, she'd be saying, "NG tube-free is the way to be!" She's our first and had better be our ONLY kid with a belly piercing :)She LOVES big kids, especia…

The big ol' G-tube surgery post (Tues 8-10-10)

This will probably be long & boring but if I don't write it down I'll forget. :) Tuesday morning (8-3) I turned off Raya's formula at 7am and turned off her fluids at 11 when she crawled too far away from the backpack and ripped the tube out of her nose. We got some last minute grocery shopping & cleaning done and then packed our bag & headed for the hospital. Then we turned around 3 miles down the road because I realized I had forgotten my pajama pants. Then we got back on the road. :) We stopped on the way & brought lunch to Donny at work:

We made it to the hospital at 1pm on the dot and checked in. They took us into the GI pre-op area and Raya got weighed & measured and put our stuff in our room. Raya got bored pretty quickly so I took her to the very well-stocked playroom. She was in heaven, especially because there were no big kids there to take away the cool toys she found. :) We ended up being in pre-op for a whole extra hour because apparently I…