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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, September 29, 2010

Hmmm...

24 hours after barium swallow & upper GI=barium coming out both ends
Interesting.

Tuesday, September 28, 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 back in May was a miserable failure, as in she refused and/or was unable to swallow anything. Today was thankfully a different story. I've been preparing for it for a couple of weeks now, which really just means that I haven't tried to feed her anything at all for 2 weeks. :)
We started with either the pudding or honey thickness, I can't remember which. She was polite enough to take 2 good spoonfuls from a little take & toss baby spoon and did pretty well swallowing it. I think they said there was mild pooling or a mild penetration or something like that (meaning that some of the barium briefly moved toward her airway instead of going straight down her throat).
After that we moved on to the nectar thickness from a black plastic spoon I got at Costa Vida that Raya likes to play with. She took a tiny bit from that spoon but then decided she was done & clamped her mouth shut. After I tried a couple times to get more into her mouth, I told the radiologist & speech therapist that she was in her "politely declining" phase and that we should quickly move on to the syringe if we wanted a chance of continuing without her vomiting. :)
Luckily, the syringe worked well enough to get a couple more good mouthfuls in. She held it in her mouth for several seconds and then looked at me as if to say, "I've decided that I'd like to swallow this now." :) She swallowed the nectar thickness really well though & didn't have any pooling near her airway.
After that we moved on to the barium that was the same thickness as her formula. We skipped the spoon completely & just used the syringe. On the very first swallow the speech therapist & radiologist simultaneously said, "Oh, deep penetration!" Meaning that the barium went straight towards her airway and pooled there before going down her esophagus. Meaning that again, Mommy's not crazy and she really does have difficulty swallowing thin liquids, including refluxed liquids. Obviously I'm not happy that she has this issue and every time I hear her cough or hear those wet reflux hiccups, I feel bad for her, but I'm so glad that we finally have test results that back up our suspicions.
As silly as it may sound, I'm really proud of her for swallowing that nasty, chalky barium that didn't even have cherry kool-aid mixed into it like last time. I wish I had a picture of her with white barium oozing out of the corners of her mouth and her cute little chin all covered in it but my hands were too busy feeding it to her to take pictures. :)

Friday, September 24, 2010

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 off at 5:00 this morning so that I could give her the next dose of the ulcer med and before I even got to her bed, I could smell the formula and blood from her stomach. Again, the medicine port had popped open in her bed and goodness knows how many hours of her 5 hour feed had gone into her bed. Since it was 5:00 and I wasn't ready for her to be up yet, I put a towel down in her bed and changed her soaked shirt and started the next feed. Apparently some of her feed must have gone in because she was still able to throw up at 6:00. When I got her up at 6:45 though, somehow the clamp had gotten closed which made the medicine port pop open again and soak another shirt & layers of bedding. Not to mention the usual morning poopy diaper.
To further complicate things, when I walked down the hall to put my sticky, smelly baby in the bathtub, I glanced at the clock on the thermostat and saw that it was not 6:45 like I thought. It was 7:48. We're supposed to be getting in the car at 7:48 to take the big kids to school. Big kids who weren't dressed and hadn't packed their lunches. On a normal day, it wouldn't have been quite as much of a problem. It wasn't the first time that I hadn't made it out of bed until 7:45. (it was the 2nd time, honest) However, this morning was Raya's appointment with the Anat Baniel Method therapist, which is a 60 mile drive each way from our house, which means I have to take the kids to school and pretty much leave straight from there to drop Kaida off & make the trek to the ABM appointment. On a side note, this was also our 100th appointment for the year.
I quickly rinsed Raya in the kitchen sink, slapped on a diaper & t shirt, threw together sandwiches for the big kids' lunches, didn't bother to make them change into clothes that matched, let Ashtyn wear flip flops to school and put her own hair into an unbrushed ponytail, tried to make Cole wear flip flops (he's paranoid that they'll break and I won't be able to bring him new ones & he'll have to sit in the classroom all day), threw everybody in the car, and drove like a madwoman carefully and safely to the school. Since they got there before the gates closed (like, as the person was closing them) and I didn't have to take them into the office to sign them in late, I consider it a successful drop-off. Then we came home and I hurried & gave the girls a bath and attempted to make myself presentable and headed back out the door so I could drop Kaida & her unbrushed hair on my sister-in-law's doorstep and go to Raya's appointment.
Did I mention the part about how last night I forgot to give Raya 3 of her 4 medications? Yeah. I did. She and her mad reflux skillz paid me back for it all day long though by spitting up like crazy, all of which was brown. Then when we were less than 1/2 a mile from her appointment, she woke up from her nap and threw up in her new carseat (which I was at least  smart enought to put a waterproof pad in before she ever sat in it). It was brown too. Luckily I can reach her better in her new carseat so I kept her pants dry and I had a spare shirt in my purse. She also inhaled some of her spit-up once during the appointment and coughed until she threw up. I had a burp rag in front of her to catch it but I had it too close to her mouth so when she coughed, throw-up shot into the air and landed on my hair & face. If the therapist laughed at me, she at least did it while she was in the other room getting a towel so I didn't see her.
When we were driving home, I suddenly couldn't remember which way I was supposed to go when the freeway split so I ended up taking a detour through the south end of town and even more pathetic, I inadvertently exited the freeway and had to take another detour to get back on so that I could drive back to the other freeway that I was supposed to be on.
So yeah, I'd like a do-over. At least everybody's still happy & healthy & I can laugh at myself. I also laughed at my neighbor this evening when she asked me if we're going to have another baby soon.

Thursday, September 23, 2010

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.

Wednesday, September 22, 2010

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

Old tube:

Bard button: looks nice & neat but was anything BUT nice & neat. This picture is probably the ONLY one I have of the tube without any gauze on it because formula leaked out as soon as the gauze was removed. Our experience was that the extension tubes were bulky & cumbersome
(and required a lot of tape to stay securely attached),
the backflow valve leaked from day 1, the tube was too big & leaked through the stoma
and unless the extension tube was taped to the G tube, it wouldn't stay plugged in.



New tube:

So far, so good. It's bulkier than the Bard & sticks out about an inch from her stomach when the
extension tube is plugged in so I worry about it getting caught on things. On the positive side though, the extension tubes are tiny compared to the Bard tubes and the tube locks into position so I don't have to use NEARLYas much tape as we used with the Bard. Raya's skin will be grateful for that.

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.

Tuesday, September 21, 2010

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:

Her new little lamb that they gave her in pre-op
Last picture of Mr. Bard :)

Making silly faces
More silly faces

Looking for dust bunnies under the chairs

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 Bard button she had was too big, there was a lot of friction between the tube & the stoma (the hole in her stomach) and that's what caused the granulation tissue. Granulation tissue is delicate and bleeds easily so that's where the blood was coming from. Mystery solved.

While the GI doctor was doing the endoscopy, she was kind enough to remove the Bard button by cutting it on the outside of Raya's stomach and then pulling the bumper out through her mouth. MUCH gentler & easier on Raya than the yank-it-out method that the surgeon was going to use. Once they finished that, they put in a Foley catheter to keep the hole open and then took her to recovery to wait for a turn in radiology:
Yep, another gross picture of my kid's stomach wound. This is the catheter keeping the stoma open until the GJ tube placement.

When she woke up, she was like this:

Then she was like this:

Then she was like this:

Then she was like this again:
You get the point. That's pretty much how she was for the 2 hours between her endoscopy and when IR (Interventional Radiology) could get us in for the GJ placement.
Here's the bummer. The radiologist came out about 20 minutes after they started on her and told me that it was "anatomically impossible" to get the GJ tube in. The way I understand it, the location of her G tube made it so that there was no way they could get the guide catheter through her pyloric sphincter and into her small intestine. BUMMER! They put a new G tube in (not the kind I had planned on getting but oh well) and told us that the GI doctor will call us tomorrow and discuss what to do next. They pretty much said that if we still need to go ahead with the GJ tube, it will require another surgery to reposition the G tube. UGH. After I hooked up her feeding pump, we finally left. I'm glad that all of our appointments don't last 6.5 hours.
But to recap the good news, the old leaky tube that didn't fit is out and there's no tears in her esophagus or ulcers in her stomach and we are very grateful for both of those things. The end.

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 tube which will bypass her stomach & send her formula directly into her small intestine & hopefully make her stop throwing up for a while.

(There you go, Donny, I hope that helps. :)

Monday, September 20, 2010

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!

Bigga-nuff

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 to get it out of her mouth or swallow it. In order to not be sad about how big she's getting & how fast she's growing up, I've decided to just be excited about how much easier it's getting for her to wear her backpack now than it was 3 months ago when she got it. She's so darn cute crawling around here in her little backpack!

Friday, September 17, 2010

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 can get one that locks. (SO looking forward to that!) She's going to try to either get a radiologist to come in and place the GJ at the same time or else try to scope her in the radiology department so we can do all 3 things at once and avoid having to do anesthesia more than once. She's also going back on the medication she just got weaned off of (BUMMER!) and starting another one to help her iron levels. There may also be a visit with a specialist in metabolic disorders in the near future because of her organic acids being abnormal all 3 times she's had that test done. (Sidenote, if your kid's doctor ever asks you to bring frozen pee to the lab, they're probably doing an organic acids test.) Don't ask me which organic acids are off or even what that means because I don't know. Organic acids are somewhere along the lines of amino acids but I couldn't tell you much more than that and Googling things is never productive. :)
Never a dull day with Raya!

Thursday, September 16, 2010

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 day, her reflux wakes her up from naps after 30-45 minutes. At the very least, I can tell that it's annoying to her. Her poor carseat is going to be good for nothing but the trash heap when she's done with it because she's thrown up in it so many times. I dread taking off the cover & finding out how gunky it is under there.

I have to say that this week has been a rough one in many ways, but mostly emotionally. Our little community was rocked by the sad news that a couple that we all love dearly had lost their little boy just days before he was due to be born. I know that sometimes I complain (okay, a lot of times I complain) about the way things are with Raya, but I truly am grateful for her and everything that comes with her. There are some bumps in our road but we are just so blessed to have her. I think that once you lose someone close to you, it's harder to be oblivious to the possibility that it could happen to you. That fear is in the back of the mind of every parent and when you watch someone close to you living out your worst nightmare, it's really hard to go back to pretending that you're immune to those things. Very sad & humbling week around here.

Tuesday, September 14, 2010

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 that Raya's labs looked good, meaning that she hasn't lost too much blood and doesn't need to get any blood products. Good news. :) She was also calling to verify that I had been able to get the prescription that I forgot to get from her at her office. I love it when I leave without stuff. :) The medication is called Carafate and what it does is adhere to protein, i.e. blood, so it will coat the "owie" in her stomach/esophagus and protect it so that it can heal better & more quickly. Hopefully it will work so she can feel better. Really though, it hasn't seemed to phase her much. The new med is throwing a wrench into my wonderful sleep schedule though. Instead of feeding her for 10 hours at a time, she now has to be fed for 5 hours, take a 45 minute break, have her medicine, wait 15 minutes and then start the next feed. I really have been spoiled being able to put her in bed and sleep all night so it's okay. :) Honestly, I'm just so grateful to have her that I will gladly take whatever she comes with.

Oh yeah, and she weighs 19 lbs 12.2 oz (8.96kg) and is 28" (71cm) long.

Monday, September 13, 2010

Gross.

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 somewhere in her lower esophagus that's probably a result of vomiting. It's really not surprising given how many times a day she's been vomiting for the last 5 months. She gave her a prescription for a medication that we'll have to give her on an "empty" stomach (since her stomach never really seems to empty) 4 times a day for a few days. It's supposed to adhere to any proteins that are present in her stomach & help heal the tear. If the bleeding continues or gets worse, she'll have another endoscopy to see where it's coming from and if it needs more intervention.
In light of the stomach blood, we've also decided that she for sure needs to have a GJ tube at least for a little while to give her poor little body a rest from all the vomiting. We're ALL ready for a break from it. Especially Mr. Washing Machine.

Sunday, September 12, 2010

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 actually put pants on her that day but doesn't she look like a big girl all of a sudden?


She is such a sweet girl, especially considering everything she's been subjected to in her short little life so far. Even though she's had an increase in some of her symptoms lately and has some new ones as well, she's still such a happy baby. She's been making some funny new faces lately and she points with one finger a lot now. She also LOVES the shower and she loves taking baths with Kaida, who, by the way, has started figuring out that Raya can actually be fun to play with. Well, really, Kaida just likes bossing her around but it works out well because Raya likes attention from the big kids even if it is in the form of bossiness. :)
I don't have any current height or weight stats because miraculously, she hasn't been weighed or measured for 3 weeks now. :) If I had to guess based on the clothing she's wearing and how close I am to getting her a convertible carseat so I don't have to lug her around in the baby one, I'd say she's probably around 20 lbs. My biggest 1 year old was Cole, and he weighed 20 lbs and 1/2 oz at his 1 year check-up 3 weeks after his first birthday. It's amazing to me that Raya has gotten that big already, especially considering the amount that comes back out of her on a daily basis. Her growth and general health is something we are very grateful for.
Raya is coming to a point when the differences between her and other kids her age are starting to become apparent. At church today, we sat next to a friend of mine whose baby is about 6 weeks older than Raya. It made me realize how much we depended on food to entertain our other 3 babies at church when they were Raya's age. My friend's little girl started to get noisy so she handed her a cracker. The little girl sat down on the floor and munched the cracker and then got into her mom's diaper bag & pulled out a bottle and drank it. If I tried to give Raya a cracker to make her happy at church, she'd just laugh at me. :)
For the most part, I've been oblivious to the things about Raya that aren't "normal". Well, aside from the whole being fed by a machine thing. :) I guess what it comes down to is that I never realized what a huge role food plays in the whole developmental process of a baby. So much of their world revolves around discovering and experiencing food and learning what to do with it. I don't know where I'm really going with that, I guess it's just an observation that I never made before I had a child whose relationship with food is pretty much non-existent and negative.

Now on to the brown liquid. We had thought/hoped that the brown stuff she threw up on Thursday (I think) was going to be the only brown stuff we saw from her but unfortunately that wasn't the case. Last night she threw up brown again but the feeding pump had been on the whole time. This morning she threw up more brown stuff. We didn't catch any of it so that we could take a sample to the doctor but luckily her G tube's backflow valve is defective so as soon as I unplugged the extension tube from her G tube to put her in the shower this morning, she started dripping coppery-colored fluid from her stomach and all over my bathroom rug & her pretty pink pants which will probably never be the same.  :) I happened to have some pediatric urine specimen collectors which are pretty much just plastic bags with a hole in them & adhesive around the hole, so I stuck the hole around her G tube & stuck the adhesive to her skin and let her drip into the bag for a couple minutes. Voila, sterile stomach content specimen. :) Later, I plugged the decompression tube into her stomach and got another good sample and that one had some pretty visible flecks of blood in it. They look like tiny little coffee grounds. I have no idea what it means that there's blood in her stomach other than the fact that there shouldn't be blood in her stomach. I don't know what, if anything, they'll do about it but we'll be taking the samples in tomorrow for testing.

Thursday, September 9, 2010

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 we've already had in the short time we've been attempting solid food with her, it was SOOOOOOO exciting to see her taking the initiative to explore the food. She smeared it all over the tray, squished it between her fingers, and rubbed the spoon in it. I even saw her stick out 1 finger, push it all the way across the tray through the puddle of squash, put the finger in her mouth, and make her "Hmmm...not sure if I like this" face. It was seriously the highlight of my day. (I'm having computer issues right now but I'll add more pictures later. You KNOW I was all over it with my camera. :)
When she finished, I was left with the aftermath:
It's no secret that I'm not Holly Housekeeper or that cleaning up baby food messes is not my favorite thing but I didn't even care about the squash mess because SHE PLAYED WITH SQUASH!!
The excitement of the day was squashed (HA HA) by her afternoon vomiting session. I saw it coming but didn't think anything would come out since she'd just been off her feeding pump for 3 hours but she somehow managed to throw up a large amount of brown liquid. It wasn't squash and we don't know exactly what it was but it might have had blood in it so we're doing more labs. It was a bummer, but the squash thing was pretty exciting. Thank you, Costa Vida for providing what is so far our most successful feeding therapy tool. I shall return soon to get more. :)

Tuesday, September 7, 2010

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 is simple and user-friendly (Especially nice when home health doesn't provide you with an owner's manual.) *Owner's manual can be found by clicking here*
*It has colored lights that show when it's running or not running (easier to tell at a glance when it's running than the Infinity)

Cons:
*Not suitable for a baby/child that is mobile
*Has to be kept upright or else air will get into the line
*Buttons are easy to push (Ask my 2 year old, she changed the language to Dutch once and turned off the pump without anybody noticing for about 6 hours.)
*It's noisy in comparison to the Infinity (makes more noise while it's running)
*It's bulkier and heavier than the Infinity



Zevex Enteralite Infinity
Pros:
*Very small & compact
*Can be used in a backpack that's small enough for a crawling baby to wear
*Easy to program
*Can be turned any direction without disrupting the feed
*Can be primed without using the "prime" button
*Pump sets load very easily
*Has one alarm tone to signal the end of a feed and a different alarm to signal a problem with the pump [**NOTE: We've had to exchange our Zevex pump a couple of times for different reasons and the new ones have not had an end-of-feed alarm, which can be bad if you forget to reset the dose before starting an overnight feed. Not that we've ever done that.**] **See update below**
*MUCH quieter-running than the Kangaroo Joey
*Adaptor plugs are made to plug more securely into a G tube extension set than Kangaroo Joey adaptor plugs
*We haven't had as many problems with broken pump sets with the Zevex Infinity pump as we did with the Kangaroo Joey pump

Cons:
*The "prime" button is SLOWWWWWW
*The adaptor plugs on the pump bags don't work as well with NG tube ports as the ones for the Kangaroo Joey pump do
*The tubes can get kinked easily when being used with the little backpack because of where they enter & exit the pump in relation to the pocket/zipper on the backpack. We never zip the front pocket all the way.
*IV pole clamp doesn't have anywhere to coil & store power cord
*Screen is small & difficult to read from an angle
*Alarms & volume can't be changed**See update below**
*Because the backpack Raya uses is so small, it's a little more difficult for an adult to carry (i.e. strap doesn't fit on my shoulder)
*It's really difficult to plug in the pump to charge it without taking it out of the backpack, unlike Kangaroo Joey
*The cover for the pump set (where you load the pump set into the pump) is on the front of the pump which makes it hard to keep it protected. (a cracked cover was the reason we had to exchange the first pump)
*The caps on the pump bags are made to detach from the bag (instead of being tethered to it) and if they accidentally pop off once, they'll never go back on to stay **Update: The company that makes the Zevex Infinity pump has re-designed the pump set and changed the way that the caps attach to the bag so it's not as much of a problem, however, the new design is more difficult to hang in the backpack than the old one and we're not huge fans of some of the changes.**
*Starts beeping if the pump is on for more than 2 minutes without pushing the "Run/Pause" button which is annoying
**UPDATE 2-11: It was brought to my attention that it IS actually possible to change the volume of the alarms on the Zevex Infinity pump and to turn on/off the end of dose alarm. (Thank you, Sandy!) However, I have to say that there is no way in heck I would have ever figured it out without the user's manual (click here for manual) because who would ever think to push the on/off button while holding down the + button at the same time for 1.5 seconds in order to adjust the alarms and then use the Prime button to scroll through the options. Seriously?!? NOT very user-friendly, especially for people whose home health company doesn't provide a user's manual or mention that it's available online (thank you again, Sandy, for the link!).

Apparently I don't have many pictures of the Infinity pump yet. :)
I loved the Kangaroo Joey pump. There are a lot of things that I miss about it and certain features of the Joey pump that I preferred over the same features on the Infinity pump. That being said, there came a point when the Joey was just not working for us anymore because Raya became too mobile for it. If she moved too far from the backpack, it tipped over and air got into the line so I'd have to pause the feed to reprime it. The Infinity pump is a must for a mobile child, but is not a great combo with NG tubes. The adaptor plugs don't plug into the ports on NG tubes as far as the plugs on the Joey pump bags do, which makes it easier for them to come unplugged. They do plug nice & securely into the G tube extension tubes though.

Conclusion: Kangaroo Joey pump is great for NG tubes and those with limited mobility, Enteralite Infinity pump is great for G tubes and babies/kids on the move.

See the links below for more information & better pictures of the pumps and backpacks:

Monday, September 6, 2010

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 while. Over the past 3 weeks or so, I've been able to put 1 1/2 packets of gauze in it and that kept it from leaking. I think that even though that was enough to keep it from leaking, it didn't put enough tension on the tube to prevent it from moving a little bit, which is one of the things that causes granulation tissue. Once again, one of our children has survived parenting by trial and error. :)

Here she is during our gauze change this evening:


You can't really tell from the picture but she's yelling at me. She does that a lot. I think she's learning it way too young and she'd better knock it off before she gets old enough to get in trouble & have to stand with her nose on the wall like the other kids. :)

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't in the box with everything else yesterday. Neither were the extension tubes that we're DYING to get or the 2 inch wide foam tape that the nurse gave us to try out & works much better than most of the other things we've tried.
Aside from that we've had a pretty good week. We're slowly adjusting Raya's feeding schedule to try and give her more time off of the pump. She had PT on Tuesday and went to a practitioner of the Anat Baniel Method on Wednesday. That was a pretty cool appointment & I'll probably discuss it more later. The only drawback of it was the 120 mile round trip there & back. We're having a nice, quiet day at home today and then we have feeding therapy tomorrow.

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 week & she told me that a lab result had finally come back abnormal & that gave us something new to look at. I was hoping that we'd go in today & she'd have some new information for us but that didn't really happen. We weighed & measured her (she's now tipping the scales at 19 lbs 1 oz which is pretty much enormous for a Donny+Brandis baby. She will for sure be our biggest 1 year old. The fact that she's gaining weight at all & at the rate she's gaining it is a huge plus, especially considering that she does lose a lot of calories from throwing up.

Sometimes our visits with the GI doctor leave me feeling upbeat & like we're just about to find the tunnel that there might be a light at the end of, but this wasn't really one of those visits. It wasn't bad or anything but I left the office feeling like we've stagnated and like this is going to be long-term. It's frustrating to feel like you're crazy because you know your kid has a problem but the problem doesn't have a label yet.

So anyway, we did discuss again the possibility & probability of doing a GJ tube when it's time to change out her G tube for a button. The bummer about that is that the nifty little button I picked out at the surgeon's office doesn't come in a GJ tube so we won't be able to use it and might not get a button at all if we do the GJ. Not super excited about the prospect of not getting a button (I think I explained before why buttons with a locking device are SOOOOOOO much better than tubes that don't have one) BUT if it's for the greater good then we'll do it. The main reason for trying the GJ is that it will most likely make her stop throwing up just by virtue of the fact that with a GJ tube, the feed goes straight into the small intestine so there wouldn't be anything in her stomach to throw up. The down side is that she'd have to stay on the almost 24 hour feeds that she's on now as opposed to going to shorter faster feeds during the day because the intestine can't handle large amounts like the stomach can. I'm sure there are other drawbacks but I haven't googled them yet. Not sure if I want to because the GJ is the least invasive of the "Operation Stop the Vomiting" options so regardless of the drawbacks, it's still our best bet at this point. We're also going to postpone her swallow study for another month and repeat the upper GI series at the same time so we can give her a little more time to learn to swallow. We're repeating the upper GI because the vomiting has gotten more intense/violent lately & the doctor is afraid that she might have given herself a hiatal hernia & that would help us see if she has one or not.

We were able to get another treatment of silver nitrate on her granulation tissue & bring some extras home with us. Even after 2 applications of it, the color & size of the tissue has changed a lot and hopefully it will go away with another couple of treatments. I hope so because it's gross. We also got some probiotics to help with the problem she's been having out the other end and another new kind of tape that we haven't tried yet that will hopefully help save her poor little skin.

Let's see, what else...We reached our 90th appointment for the year. I know there are other people out there who have way more appointments than we do, but if you had asked me a year ago if I thought I'd EVER have that many appointments in the first 8 months of the year... Anyway, I started keeping track of mileage a few months ago for tax purposes (over 1,000 now, by the way) and if things continue as they're outlined in my schedule book, we should hit appointment #100 by early October, if not sooner. I'm going to get a prize. Not sure what yet but I'm totally getting a prize.

Last but not least, she officially HATES laying on medical tables, nurses, doctors, stethoscopes, needles, and getting her diaper changed. We were SOOOOOO close to getting out of the office without her throwing up but she didn't quite make it. We had finished the blood draws (out of both arms because she's hard to get a vein on & her veins don't always bleed well) and all we needed to do was take the cotton balls out of her diaper. As soon as I laid her down on the table to change her diaper, she turned red & threw up all over the table.

Oh, so then later we had to go to the bank to get something notarized and they took forEVER! The kids were bored to death but were doing their best to be good. About half an hour into our 45 minute wait, Ashtyn & Kaida were sitting on one of the chairs in the waiting area and Ashtyn said something but I didn't quite hear her. Then Kaida stood up and I saw the giant wet spot on her chair. You know what? I. Didn't. Care. Not one little bit. I was actually a little amused by it and thought to myself (and out loud to Donny), "That's what they get for keeping us waiting so long." Isn't that terrible of me??

Luckily, at the end of my very, very long day, I got to leave my darling children & husband at home and go to dinner with the girls for a fun baby shower. It was relaxing & refreshing and just what I needed. The food was good, the decorations were cute, and the company was great!

*Disclaimer: I'm really not trying to be a downer or looking for sympathy or anything, I'm just recording what's going on & today happened to have more of a blah feel to it than other days. But I'm over it now. Onward and upward we go. :)

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 nutriport is held in place by a water-filled balloon on the inside of her stomach, which we can inflate & deflate in order to change the tube ourselves. The Bard is held in place by a plastic "mushroom" on the inside of her stomach which means that if it were to ever come out, we couldn't put it back in ourselves & would have to take her straight to the ER to have it replaced. She also has to be under anesthesia to have it taken out or put in.
#3-The extension tubes for the nutriport have a separate port to put medications through. The ones we have for the Bard don't, which means that giving her medications is a pain in the rear.
#4-The nutriport comes in the right size for her and the balloon can be expanded so that it fits more snugly against her stomach, as opposed to the Bard, which is too big & leaks unless there's 2 packages of gauze around it.
So we're pretty excited about getting the button changed. She'll have to be put to sleep for the procedure but it will be outpatient this time, thank goodness. She will probably still be on the 24 hour feeds and may be getting a GJ tube, which is a whole other post, but at least the button will be more baby-friendly.

So my big fat oops. I had turned off the feeding pump when we were at the surgeon's office yesterday so that he could look at her site & put the silver nitrate on it. That was about 1:45pm. We finished discussing what we needed to discuss, the medical assistant taught me what I needed to know about the G tubes, we scheduled the procedure to change the tube, and left so we could be on time to pick up the other kids from school. We went about the rest of our evening activities and put the kids to bed. Then around 9:45, Donny was getting ready to get in the shower & checked to see how much formula Raya had left. The bag was almost full and when he looked at the pump, it was off. As soon as he told me it was off, I realized that I had never turned it back on after her appointment with the surgeon 8 HOURS earlier. Needless to say, I felt like crap. Since the extension tube had been sitting there for 8 hours with nothing fresh going through it, it smelled TERRIBLE so I had to take it off & clean it, throw out the bag of formula, and get her a new bag with fresh formula. At least she's not old enough to realize that her mother forgot to give her 1/3 of her daily calorie intake. And on the bright side, since she was missing 8 hours' worth of formula, she didn't throw up yesterday. :)

I also learned a lesson yesterday about not leaving Raya unattended without a shirt on. I had just given her a bath, cleaned her tube site, and put a fresh dressing on it and then left the room for about 2 minutes. When I came back, I found this:

She had ripped the gauze & tape off and was chewing on a piece of tape. Honestly I was just grateful that she hadn't ripped her tube out too. Lessons learned, won't make those mistakes again. :)

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 puddle on the floor.

The gauze around her tube was completely saturated (it's supposed to be white, not yellowish) and the tape was also totally wet. Normally it looks white too, not clear-ish/flesh colored.

(Here comes the graphic part.) This is what her button looks like without gauze around it. (The "safety plug" is open but that's not the reason it's leaking. The safety plug's sole purpose in life is to keep bacteria out when the tube isn't in use, which is a grand total of 15 minutes a day for her, and it doesn't stay closed when the tube is wet. When she's laying on her back & there's no gauze around her tube, you can literally watch the formula drip out, especially if she's mad at me for making her lay down. :) The red junk is granulation tissue, which I still need to learn more about & am not a big fan of.


Tube w/safety plug closed:


When she first came out of surgery, her tube was nice & snug against her belly. It must have been swollen because it's not snug AT ALL anymore, & on the contrary, it's SOOOOOOO loose! You can see the stoma (aka the hole that the tube runs through) and that there's a good-sized gap between the flat bottom of the G tube and her stomach:



Here's what it looks like with fresh gauze, tape and the extension tube plugged in for a feeding (and the face she makes all the time now) :


We've had a bit of a dilemma with our adhesives. If anybody who happens to know about G tubes & such happens to read this, please feel free to make suggestions. Here's the problem. Since she gets fed 23+ hours a day right now, we need tape that will keep her extension tube from getting pulled out of the G tube while she's crawling around & playing. However, since she's getting fed 23+ hours a day right now, the extension tube gets gross & needs to be cleaned 3-4 times a day, so I have to remove the tape & clean it, which makes me feel bad every time I rip the tape off her skin. We've tried putting a giant piece of duoderm on her side to tape it to like we did with her NG tube on her face but that didn't go very well. We're trying paper tape right now but it's still hard to get off.
Well, anyway, that's what her tube looks like these days. Thankfully, it rarely leaks THAT bad & I don't have to change it 3-4 times a day like we did when we first got home with it. I don't know why it did that to her yesterday but I think it might just be leaking from the backflow valve since it's stuck open all the time. Also thankfully, we go see the surgeon Tuesday, have feeding therapy Wednesday, and see the GI doctor on Thursday. Hopefully the GI dr will have new information to discuss with us Thursday since we FINALLY had a test result come back slightly abnormal & there are now some new possibilities of what might be causing the vomiting.

**Update Jan. 2012: We're pretty well-versed in adhesives now. Here's a couple posts about ALL the kinds we know of and what they're good for:
Adhesives for NG tubes and how to tape NG tubes
Adhesives for G & GJ tubes

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 that struck me was the man who put on a new pair of shoes that morning, took the various means to get to work but before he got there, he developed a blister on his foot. He stopped at a drugstore to buy a Band-Aid. That is why he is alive today...

Now when I am stuck in traffic, miss an elevator, turn back to answer a ringing telephone...
All the little things that annoy me.
I think to myself,
This is exactly where
God wants me to be
At this very moment...

Next time your morning seems to be
going wrong,
You can't seem to find the car keys,
You hit every traffic light,
Don't get mad or frustrated;
It may be just that
God is at work watching over you.

May God continue to bless you
With all those annoying little things
And may you remember their possible purpose.


Kind of makes you think, doesn't it.

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, especially HER big kids
  • She's been pulling herself up to stand for about a month and can also move from one end of the couch to the other as long as she's holding on to it
  • She had her first taste of bananas a couple days ago and although she still doesn't want anything to do with eating it, she didn't hate it either (YAY!!)
  • She's fast on her way to being our biggest baby yet at 18 lbs 1 oz and the 37th percentile. Cole weighed 18 lbs 2 oz at 9 months, Ashtyn weighed about 16 lbs, and Kaida weighed 13 lbs 3 oz.
  • Since we got home from the hospital, she has gotten very cuddly with me (which I love) and pretty much only likes Daddy when Mommy is holding her (not so fun, especially when I need to leave her home with him)
  • She still sleeps all night long
  • She's happy most of the time
We love our Ray-rays!!

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 was the only one that got the memo about having a different surgeon and he was busy so we had to wait for him.

When it was finally time to go, I had to get one last picture of her perfect belly before we let her get it pierced. :)


They let me carry her into the room and then I took her clothes with me and went to the waiting room. They're really smart there & they wait until the kid is already asleep before they put the IV in. The procedure didn't take very long. The put in her G tube and did some tissue biopsies to test for a few more things that could be causing the vomiting and then she went to recovery. Once she was starting to wake up, they let me come in and hold her.


We had to wait for a long time to go up to our room because they couldn't find a crib for her. They finally found one and got her up to her room around 6:15. We got settled in and then had a visit from Auntie Brooke, who was sweet enough to bring me some dinner & snacks.

Raya cracks me up in this picture. Her hand stayed like that for several hours. She was very groggy. :)

This picture was about 6 hours after surgery. She spiked a fever pretty much as soon as we got her up to her room and had a stuffy nose so they swabbed her to see if she had anything contagious like RSV, flu or pneumonia. Just when she thought she was done having things shoved up her nose. :) This picture was right before she got her next dose of morphine (hence the way that she's not moving) and right after we changed her decompression tube to one that the nurses liked. Apparently they didn't like the one the surgeon put in.



After they found out that she had a fever, they had to move her out of the room we were in because of the risk to the boy she was sharing with. He had already been there for a week and I chatted with his mom a few times over the week. They put us in with an 11 day old baby boy that also had a fever but had swabbed negative for the same things she was negative for.


We settled down for the night in our new room & then the surgeon came on rounds at 7:00 the next morning. I really appreciated that, ha ha. She woke up and was happy until she started trying to move. I reminded the nurse that she needed her pain meds and then she was comfortable but had that glazed look in her eyes the rest of the day:


Her heart rate was really high most of the time so they left the monitor on her toe, which was kind of annoying. When she'd start feeling good & move around a lot in the crib, it would throw off the sensor & make it look like her O2 sats were dropping way down & set off alarms.
Donny came over Wednesday afternoon and Raya was really happy to see him. She sat on his lap for a while & played with the toy they brought her from the playroom. (She was on isolation because of the fever so she couldn't go out of her room.)


After the nurse came & gave her another dose of morphine, she started being really funny. She got that glazed over look again and sat on Donny's lap just playing with his nose and squeezing his neck flesh. Her expression never changed the whole time. Her fever was on its way back up then too so she just wasn't feeling good.


By the evening she was feeling a lot better and was sitting up playing and her fever went down a little. We were ready for another good night's sleep but it wasn't to be. Someone had the brilliant idea to lay new linoleum flooring in the room next door all night long. They started at 10:30 that night. Then the baby in the room with us needed labs done so he was crying for a long time and they were in & out getting vitals on both babies all night. It wasn't the best night's sleep.



That night they also switched her from Pedialyte to formula. Her IV was questionable at that point too so the night nurse was afraid to give her morpine in it because she was afraid it would leak out and burn her, so she switched her to tylenol w/codeine through her G tube instead. I wasn't too happy about it because I knew once she had a few hours of formula she'd start throwing up again & would probably throw up the tylenol. Sure enough, they increased her to 70ml/hour (more than she was on before surgery) and she woke me up vomiting at 5:30 Thursday morning. After that they decided her IV needed to come out because it wasn't in good enough anyway:


She threw up again right after the nurse took her IV out and I knew we were in for a long day at that point. They turned her feeding pump back on at 70ml/hour and she threw up again 2.5 hours later right after she had gotten 2 of her meds. They were only giving her hydrocodone for pain at that point & she could only get it every 4 hours.
She woke up at 10:00 and didn't move a muscle or even smile. She just laid there shaking and clenching her fists. When I watched her heart rate go from the 130s to the 190s in about 5 minutes, I called the nurse and reminded her it was time for pain meds. Her temperature was back up to 101.5 too so they waited a little while for the pain meds to work before they started the feed.
They were feeding her really slowly all day, which wasn't totally necessary. If they would have listened to me... Anyway, all day long she pretty much looked like this:

She has her tongue out a lot of the time for reasons unknown, but it's usually still wet so when I realized that her tongue was completely dry and that her lips were cracked & bleeding, I told the nurse she was getting dehydrated. They watched her all day and I started to suspect that we wouldn't be going home that day after all. I was glad I had asked Donny to bring me a couple of extra shirts the day before and grateful for the junk food Brooke had brought me. :)
Bless her little heart, she just didn't feel good at all on Thursday. Her temperature was going up & down every hour and her heart rate was still in the 160s or 170s. She started falling asleep sitting up:


By evening, she was feeling pretty good and was even standing up:


But that didn't last long. We noticed that her G tube was leaking profusely that evening, she threw up an entire feed, and then her fever jumped back up to 101. As soon as she threw up, they decided they'd better put in another IV. Anyone who has ever had to start an IV or take blood from her has had a hard time getting a good vein, so it took about half an hour and was very traumatic for her. Not exactly pleasant for me either, but I have to say that I'm grateful for my farm upbringing because I'm pretty calloused to inflicting pain on innocent little creatures when it's necessary. If it's gotta be done, it's gotta be done.


Friday morning they gave her zofran to help keep her from throwing up and gave her a short break towards the end of her overnight feed. Because of how much her G tube was leaking, they had to send her down for a G tube study that afternoon to make sure that formula wasn't leaking into her abdominal cavity. Luckily it wasn't but it was definitely leaking back out around the outside of the tube. The surgeon told me that it was because the tubes only come in 2 sizes and the smallest size was still too big for her, so the only solution is to pack extra gauze under it to keep it tighter in her stomach. When it heals, we can switch to the other kind of tube that's adjustable.
They still couldn't isolate a cause for her elevated white cell counts & fevers so we were stuck on isolation. Bummer.

Friday afternoon her fever went down for a while and she had a nice nap with me:


Poor kid thought she was done with socks on her hands too. :) We didn't dare leave them off once the IV went back in her head though because it was such a difficult one to start & we didn't want to have to do it again. Donny came to visit again after work & brought me some delicious dinner.


He stayed until visiting hours were over and then she and I watched reruns of whatever was on TLC and HGTV until she fell asleep at 9:45. Unfortunately that only lasted for 15 minutes until the PCT came to get her vitals again. That's the most annoying thing about the hospital.

Saturday morning started out pretty much the same as the previous 2 days so I assumed we'd be staying another night or 2. They drew blood & got a urine sample so they could do more labs to try & pinpoint the cause of her elevated white cell counts & fever. It was pretty much 40 minutes of Raya screaming. Finally in the afternoon they came & said that so far the labs looked good and there wasn't really any reason to keep her there. She was happy:


And so was I:


We finally hit the road at 5:00 and headed home!

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