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**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.**

Saturday, December 29, 2012


Tomorrow is big brother's birthday, so tonight we went out to dinner to celebrate. He chose Mexican food, so we went to our favorite Mexican restaurant. They always bring out bowls of chips, bean dip, and salsa while you wait for your food. Corn tortilla chips are one of Raya's favorites, so she was excited when they brought everything to the table. I gave her a plate and she said, ”I want fwee chee-YIPS!” while holding up 8 fingers. Then she grabbed herself a bowl of salsa to dip her chee-YIPS in. This is her saying, ”I LIKE chee-YIPS!” For as incoherent and off in la la land as she was yesterday, she was absolutely delightful at the restaurant. She and I have had some fun and funny conversations today. She hasn't been quite as moody today either and got to spend some time outside this afternoon. She seems to be past the worst of her cold. I'm sure she'll get healthy just in time to go back to school and catch something else. This evening when the movie they all watched after dinner was over, she came and found me and said, ”Mommy, I jee-yust want YOU to put me in my bed.” So I picked her up and snuggled her like a baby and we talked mushy talk to each other all the way to her room. I put her in bed and connected her formula & Farrell bag. Then she wanted to tell me about the movie they watched. None of what she said made any sense to me (I guess you had to be there) and her speech was getting softer because she was tired, but I knelt by her bed and pretended I knew what she was talking about. She was so happy, and that made me happy too.

Friday, December 28, 2012

So much silliness!

I don't want to jinx myself but Raya seems to be starting to feel better. She and I have gotten to sleep in our own beds for a couple nights in a row now. It's been lovely even though I've ended up being up really late anyway. We had an interesting day today. I'm not sure if it was because we accidentally missed a dose of one of her meds last night or if it's because she's not quite back to herself, or if it was just Raya being Raya, but she was in rare form.

She was very happy to go see her OT today. She was out last Friday so Raya has really missed her. For whatever reason, Raya wouldn't talk during OT. All she would do was make little animal-ish sounds and her funny hand gestures that she does with the sounds. When her therapist made her answer a question out loud, she would state at her with a cheesy grin and not answer for a minute or two. Then when she did answer, it was a one or two word answer that was barely even a whisper. She was acting silly the whole time we were in the therapy area.

After OT, we walked to another room for feeding therapy. I knew it was going to be an interesting day at FT after the way she'd been during OT. I had brought her buckwheat pancakes and a little container of syrup but when I opened the syrup, I discovered that it was completely hardened. Oops. There was a jar of grape jelly in the fridge but that was undoubtedly cross-contaminated with wheat so we didn't want to use it. The other alternative was applesauce since they had single-serving cups of it in the kitchen. Raya was okay with that so we went ahead with it. I cut up her pancake and put applesauce on it and the silliness began.

Her hands were talking to each other today. She's done that during feeding therapy before but this time it was a lot worse. She was SOOOO distracted and totally off in her own little world. She was chattering back and forth with her hands, who were taking turns holding the fork and helping each other lift it up to Raya's mouth. They weren't very good at getting the pancake pieces into her mouth and she wasn't doing a very good job of taking the bites off the fork with her mouth either. I normally try to be involved in therapy sessions but this time, I mostly just sat back and let the therapist deal with her. I wondered many times if the therapist realized what Raya was doing because she would respond to things Raya had said (or what she thought Raya had said) when really, Raya was not talking to her, she was making one hand talk to the other hand or else talking to her hands. It was comical but only because I didn't have the energy to be frustrated by her lack of cooperation or snail pace at eating her pancake. Sometimes I appreciate when she "misbehaves" in front of her therapists because then they know that it's not just me that she does these behaviors for. She wouldn't listen to her therapist either! I discreetly took a few pictures with my phone because she was being so silly but I didn't want her to know that I thought she was being silly.
Right hand standing on the table while left hand waves the fork around
Dancing hands...
One hand {barely} holding the fork while the other one supports it
One hand helping the other hand hold the fork to poke a piece of pancake
One hand "standing" on the table so the other hand could stand on it to get a boost and reach her mouth with the fork
Playing iPad games in between bites
So you can see that feeding Raya really is a "group" effort, haha. :) During other sessions it has taken less than half an hour for her to eat whatever it is that we have for her. This time she was eating clear up until the 50 minute mark and we ended up taking some of her leftovers home. She usually doesn't get to play her therapist's iPad until she's completely finished eating but today, she had to play every couple of bites or she completely lost interest and motivation, and it wasn't because she didn't like the pancakes & applesauce. She was just off in la la land, which was a common theme throughout the day.

Once we were at home, there was a constant level of chatter coming from her but most of it was unintelligible and made no sense. When we'd talk to her, she'd give us a happy but blank stare and make animal noises with hand gestures instead of talking to us. She was pretty moody too, which I think had to do with her stomach. In the afternoon, I had just gotten the mail in and was sitting at the table going through it. The kids were all sitting at the table looking at the slough of Christmas cards that came and Raya was jabbering nonsense to herself. Then in the middle of whatever she was saying, she said as clearly as could be, "Mommy, I just puked in my mouth. But my throat made it go back." So yeah, she's having some reflux. We're bordering on having to slow her feeds down again, which puts us teetering on the edge of needing to go back to a night feed. That would be another step in the wrong direction but if it makes her feel better, then we'll just have to do it. Right now, she really does feel better and have more energy when she's not being fed.

On the bright side, she's been tasting some new foods lately. I finally got her to eat the Glutino table crackers that I bought. It took several attempts but she likes them now. My plan is to use them to get her to taste other things. We started with putting sunflower seed butter on a cracker, which she didn't like, but she did like strawberry jam on it. I'm okay with her not liking sunflower seed butter because I would hate for her to get confused and think peanut butter is okay too. Since she likes them with jam, we had her dip them in applesauce. Then we were having BBQ sauce with dinner one night this week and she wanted to dip the cracker in that. She ended up eating 2 1/2 crackers and about 2 teaspoons of BBQ sauce, which added up to about 200 calories. Definitely not very nutritive calories but the important thing is that she's branching out and expanding her palate.
A couple days ago, I had given her a couple of crackers with jam on them and after she finished eating, she came up to me and said, "Mommy, my skirt is wet." I looked down and sure enough, her extension tube had come unclamped and everything she was eating was coming straight back out through the open extension tube. It was gross and I was bummed about the calories but happy that she at least ate the crackers.

Wednesday, December 26, 2012

Christmas with a sick kiddo

We had a great day on Christmas Eve. I fixed our 2nd annual fancy-schmantsy Christmas Eve breakfast, including buckwheat pancakes for Raya. She was pretty excited about her pancakes.

When breakfast was all cleared up and the house was nice and clean, we loaded up the car and drove to Donny's parents' house about an hour away. It was a bright, sunny, beautiful day, which kind of ticked Raya off while we were driving because she doesn't do well with bright light in her face. She fell asleep pretty quickly though and had a nice nap during the drive. The kids were all excited to see their cousins, aunts & uncles, and grandparents. And the horses and dog. :) Raya followed her daddy around while he helped Grandpa feed the horses.

By then, it was getting chilly and windy so I made her come back inside since she's still not over her cruddy cold. It was time for dinner too so we headed in to help get things ready. I had brought her special crackers and a fresh jar of strawberry jam with us but she wasn't interested. She asked for Fritos but then got mad at me when I didn't let her put her hand in the bag to get them out herself and ended up not eating those either. She really just wasn't too interested in food.

After dinner, it was time for the games. Grandpa's birthday was last week so everybody took turns telling funny stories and asking him questions. Raya entertained herself by moving her little purple chair all over the place while the big people talked and laughed.
(she's over by the fireplace)

Then the kids did their white elephant gift exchange. Some of the cousins were sick and couldn't come and we missed them! Raya got a little backpack that says Purina on it. :)

The adults had a white elephant gift exchange, which was then followed by what was probably the most irreverent version of the Nativity that the kids have ever acted out. Raya somehow got left out of it but she was getting pretty tired by that point anyway. The kids got to open their new jammies and put them on and then we said our goodbyes and headed home. They put out a plate of cookies for Santa including the allergen-free cookies I had made for Raya so she wouldn't be handling cookies with wheat in them. (Side note, so far I am NOT a fan of gluten-free/rice-free/oat-free/dairy-free baking. That's pretty much EVERYTHING that makes baked goods good. They weren't terrible, just super delicate and dry even though I followed the directions to a T.)

I realized when we were putting out the stockings that none of them were labeled so I ended up pulling out the good ol' Micropore and a Sharpie marker and got them labeled.

We got the kiddos bedded down for the night and I crossed my fingers that Raya would be able to sleep in her own bed all night since she ended up on the couch with me every night for the previous week. (reflux+head/chest cold is a bad combo) I also left her connected to her pump all night with it turned off so that she would stay in her bed in the morning and not go peek at what Santa brought. We heard her yell at about 7 but the big kids were nice and helped her get out of bed and take her IV pole in the girls' room to play.
You can pretty much tell from that picture how she was feeling. Lousy. Her tummy was bothering her, she couldn't breathe, and she was complaining that her ear hurt, plus the cheek on the same side as the ear she said was hurting was bright red. I hoped that the Christmas morning festivities would help her feel better.

We're the kind of parents that staple a sheet to the wall across the doorway so the kids can't peek at what Santa brought until we're good and ready for them to see it. :) When the cameras were ready, we turned them loose. If Santa had realized how excited they would be about the Pez dispensers he put in their stockings, he probably wouldn't have bothered with the bikes.

Raya had a better understanding of Santa this year but she really just followed the big kids' lead. Instead of a bike like he brought the big kids, Raya got a nice wooden dollhouse. I thought she'd be really excited about it but she just plain didn't feel good.
I would like to point out that one of the first things she did with her dollhouse was locate the little wooden toilet and put a guy on it. He's front and center on the 3rd floor if you missed it. I laughed so hard when I noticed that she'd done that. She doesn't look very happy but she really does love the dollhouse. Especially the little red baby she's holding in the picture. She LOVES it. I tried to get her to smile and this was the best she could give me.

It's pretty funny how fascinated she is with putting the dolls on the potty. She could care less about the real potty.

Yep, this is the face of a miserable girl. I honestly thought we'd be making a trip to urgent care/ER.

The big kids had all gotten little boxes of cereal in their stockings, which was the biggest deal aside from the Pez dispensers. Since they were all eating something out of their stockings for Christmas breakfast, Raya wanted to eat something from hers too. She ended up eating Pez. She ate the whole pack of strawberry Pez while her formula started running.
We also discovered that she does not like lemon Pez.

After we had all eaten breakfast (cereal, orange rolls, and Pez), we opened presents. In between opening presents, Raya would grab her cheek and tell me that her ear hurt, or cry, or lay her head on my lap. It was lousy. I don't like it when any of my kids are sick, but when Raya actually feels bad enough to ACT sick, then we know she feels really awful and it makes me sad. She's felt awful so much already in her little life that it's just not fair for her to get sick. Anyway, she was happy with her presents and really liked opening them. We got her a "Super Tubie" shirt since we bought our other tubie shirts before they came out with the Super Tubie one. She was happy. :)

I think it was about 5 minutes after this that she started vomiting. Hot pink Pez vomit with a little of last night's formula mixed in. Not fun to get out of the carpet. On the bright side, it blended in nicely with her jammies so they probably won't be stained, and neither will the pink blanket we caught most of it with. Oh, and the best part was that we got the whole thing on video. Merry Christmas!

It still makes me laugh how the other kids aren't the least bit fazed by Raya puking. We turned off her formula, put her new Tubie shirt on her, scrubbed the hot pink off the carpet and couch, gave her some tylenol for her ear, and moved right along with the day. She got some fun things but her favorites so far seem to be the necklaces & little lunch pail from her grandparents, the dollhouse from Santa, and the miniature My Little Ponies from her big brother. She doesn't really care for the ponies that have hair, but she LOVES the little plastic ones that are just the right size to fit in her hand. Sadly, her least favorite thing of the day was the wonderfully soft, fluffy blanket that her grandparents gave her. For some reason, she was pretty freaked out by it and didn't really want anything to do with it once it was out of the wrapping paper.
We put it on the shelf in the closet and we'll re-introduce it again when she's feeling better. Or I'll steal it because it's so soft and fluffy. :) She really just felt lousy the whole morning and really didn't enjoy it much at all. I kind of wish we could have a do-over just for her sake.

After we were done opening presents, I started running Pedialyte into her and that seemed to help. By the afternoon, she felt SO much better and had a lot more energy.
It just reconfirmed that she really does feel best when there's no formula or food going into her. It's too bad she can't survive off of Pedialyte. I don't know what to do with this kid sometimes!

The big kids wanted to try out their new bikes so we got everybody dressed and put on our light jackets to go enjoy the beautiful weather. Raya still hasn't totally mastered the art of riding a tricycle but she wouldn't let me help her so she swerved like a drunk man all the way to the grass park. It was adorable. Melted my heart. ♥

She LOVED going through the leaves. I was proud of her for not obsessing over wanting all of the leaves off of the sidewalk like she's done before under that tree. And for making it all the way to the park with minimal help.

While we were playing at the grass park, Raya walked/ran/stumbled down the hill. It was a bit of a struggle for her to get back up but she made it. She ended up crawling most of the way because her feet weren't quite cooperating yesterday.

When the big kids were worn out, we headed home to relax and watch a movie. Raya was still going back and forth between being happy and feeling good, and being super crabby & not feeling good. While I made dinner, she was whining terribly, clinging to my legs, pushing my legs, and just being a pill. I gave her some smarties so she would go out of the kitchen (I was dealing with hot food) and oddly, as soon as she ate the Smarties, she was happy again. I think her blood sugar was all over the place the whole day but we don't have a monitor to check it so I have no idea what her highs & lows were.

The kids had gotten new sheets from my parents so we spent some time changing their sheets & cleaning up their rooms. Raya felt really lucky that we let her climb onto Kaida's bed because usually, that's a no-no.

I didn't want her to be left out when it was dinner time but none of the foods we were having were safe or appealing for her, so I put out a bowl of ice so that she could go through the "buffet" line like the big kids. We had our traditional Christmas dinner of various appetizers, which is one of our favorite traditions.

Then I remembered that I had gotten her some lemon wafer cookies that don't have any of her allergens in them so that's what she ate for Christmas dinner. She was pretty happy.

After dinner, we cleaned up and said prayers and the kids headed off to bed. Raya wasn't feeling good again so she snuggled up on my lap and fell asleep. I think that was my favorite Christmas present, although I did appreciate the laundry baskets and cookie sheets that Santa brought me.

I hated to take her to bed because I don't get to snuggle with her very often. Apparently she hated for me to take her to bed too because she woke up feeling yucky again at 11:00 (right after I had gotten nice and comfortable in my own bed) and it took me until about midnight to get her feeling good enough to go to sleep. On the couch again. I ended up running Pedialyte in overnight at a low rate with a Farrell bag for extra venting because she just didn't feel good. It helped, and she was feeling a lot better this morning. It was a bummer that we had to start feeding her formula again. She's still not at full-strength formula but we'll probably work up to that tomorrow. My fingers are crossed that she sleeps in her own bed all night because I don't know if I can do another night on the couch.

So that's our Christmas. It's hard to be full of joy and happiness when your kid is miserable yet again and isn't able to enjoy herself even though she really deserves to, but we did have a good Christmas. Merry Christmas from our family to yours!
(We took normal pictures too but they didn't turn out as nice as this one. :)

Monday, December 24, 2012

Merry {tubie} Christmas!

Tacky as it may be, medical tape + Sharpie marker = effective way to mark Christmas stockings. Merry Christmas to all and to all a good night! :)

Sunday, December 23, 2012

Not a creature was stirring...

...except Raya. She fell asleep on the floor while we watched Home Alone. This would be adorable except she only sleeps like that when she doesn't feel good. Tonight her stomach hurts, inside and out. She has another round of granulation tissue coming on so her stoma is sore. I plugged in a Farrell bag to drain her stomach because she was in obvious pain and I didn't want her to throw up. Once again, there shouldn't have been anything there other than maybe a little extra mucus, but formula came out too. :/ I'm hoping that things will get better so she doesn't have to miss the family Christmas party. Ashtyn sounds pretty cruddy too. I'll be sad if Raya doesn't get to decorate cookies. I made her some everything-free cookies so she can share them with Santa. :)

Friday, December 21, 2012

Focusing on the positive

Today, I'm trying to focus on the positive. My mood recently has been rather negative in general. Lots of frustration, other people making mistakes that cost ME time & energy, people interjecting their opinions about our family's decisions for Raya where they're not welcome, too much time required on the things I HAVE to do, and not enough time to focus on the things that I WANT to do. However, in the midst of a very frustrating and difficult week, there have been bright spots. Here are a few of them. In a bulleted list. Because I like bulleted lists.
  • Raya has gone to sleep by 8:00 every night this week, and usually earlier. She's calm, relaxed, and content in the evenings in spite of being sick. She's also been surprisingly sweet and pleasant considering that she's feeling yucky. Regardless of the negative opinions we've been given, our choice to try something to help her sleep has been a huge help to her this week as she is fighting this cold. Without adequate sleep, the body won't heal or fight off illness as effectively, so the timing on this has been a blessing.
  • Because she's been congested and has had terrible post-nasal drip that makes her gag (which is NOT a bright spot), she and I have had a lot of snuggle time on the couch this week. The last 4 nights in a row. Due to her sensory issues, she has strict rules when it comes to people touching her. I'm generally not allowed to touch her with my hands or feet while we snuggle, but just laying close to her warms my heart and soothes my soul. My grades are suffering due to the lack of study time, but it's completely worth it. (or at least that's what I keep telling my inner perfectionist that REALLY wants to get all A's...)
  • She is learning to cough things up rather than to gag on them. This is HUGE, especially with her having the aforementioned post-nasal drip gagging in addition to gagging on food. She had a nibble of a hamburger patty this afternoon and started to gag but then forced it back to the front of her mouth so she could spit it out. I am so proud of her for that. (and I'm being completely serious)
  • Raya+preschool=ADORABLE. I've only gotten to go to her class twice so far but I love seeing her in that environment. She's starting to learn the names of some of the kids in her class and they're learning hers. She tries to tell me stories (that she thinks are hilarious) about things that happened at school. They never make any sense to me but I love it. I love spending time with her in an environment that is not our house or therapy/doctor's office, because that's really the only places we ever go together. At school, I get to do fun things with her. At her class party yesterday, I helped her decorate a sugar cone with green frosting and sprinkles to make it into a Christmas tree. She was allergic to all of the activities but since I was right there with her and helped her scrub her hands after, I felt like this one was okay. (I could say more, but we're focusing on the positive...) She had a good time with it and I love to see her happy.

You can tell when she's really concentrating on something because her torticollis reappears. Notice how her head is tilted to the left in that picture. :) When I see that, it's a reminder for me of how far she's come.
On Wednesday, she came home with this little gem that I will treasure forever and ever:
I love EVERYTHING about this picture. For some reason, seeing her with her backpack on makes me so proud of her. Carrying that thing around has GOT to be annoying but she rarely ever complains now that she's used to it again. That little black backpack has been such a huge part of her life and I'm glad she's wearing it in the picture.
  • She is learning to say things like, "Wheat makes me sick." and "Milk makes my tummy hurt." She's learning to say no to a few things that she knows she can't have. Unfortunately we have a LOOOOOOOOONG way to go with that, but it makes me happy to hear her repeat phrases that will help to keep her safe.
  • We found her some crackers that are free of anything she's allergic to! I wanted to jump up and down. So far, all the gluten free crackers I've found are made with rice flour. Just about everything that's marketed as gluten free has at least some rice flour in it, and a lot of them have 2 or 3 different kinds of rice flour. It's really hard to find things she can have so I'm excited. She was too. She hugged the box the rest of the time we were at the store. :)
  • The big kids sang in a community Christmas choir last night and they did a great job. That was definitely a bright spot in my week. Ashtyn had a solo and did a beautiful job on it. They looked great too. I am very blessed with such helpful kids. They don't always like helping with housework, but they are getting better and better at it and their willingness to help is improving too.
  • Raya's stoma improved with the silver nitrate treatment that the surgeon did on Tuesday. By today it was looking pretty yucky again and needed another treatment, but I'm feeling a little more optimistic about her stoma healing over better than it was before the scar tissue removal.
  • Being able to lean on other special needs mommas has saved my sanity this week. 'Nuff said.
  • As irritating as it was to have the delivery of the yet-to-be-delivered catheter bags messed up for the second time in a row, it was pretty darn funny to get a big box of 20 latex catheter kits instead of 3 little catheter leg bags. Not quite as funny as the 3 pairs of diabetic socks but still funny. Or at least it will be funny once they fix the error and bring the catheter bags.
  • I had a very productive discussion with the principal about making an addendum to Raya's IEP that I think will be in everybody's best interest. It's such a huge relief to know that the administration is approachable, and is willing to look at alternatives and try to come up with the solution that best suits the student's needs. We'll be having a formal meeting after the break to make the addendum.
  • Even though they sometimes push my buttons and make me crazy, I am so very grateful for my kids. They make me feel important, loved, and appreciated (thanks to a wonderful husband/father who teaches them well) and they are so easy to please. They are not demanding and they are happy with what they have in life.
  • Rather than my usual grin-and-bear-it, I have actually made comments in rebuttal when certain subjects have come up with members of her health care team this week. Disagreeing with medical professionals is not something that occurs to a lot of people, nor do most people have the courage to do it. I don't know if this is a matter of courage or just lowered inhibitions because I'm too tired to care, but it's actually pretty empowering to know that I have a right to disagree and feel good about the informed decisions that I make, and to speak up for myself.
  • My girl is TOUGH. For 2 1/2 weeks now, I've been changing the dressing on her stoma at least twice a day just to keep it clean. It's sore and it hurts her. She doesn't like it, but she (for the most part) lets me do it anyway. Tonight when I had to do another silver nitrate treatment, I explained to her beforehand that I needed to put some of the medicine on that her surgeon had put on. She knew it was going to hurt but I told her she could have a marshmallow when she was done and she agreed to let me do it. She let Cole help her keep her hands out of the way and let me hold her legs down while I basically burned an open wound on her stomach. She yelled a little but she didn't cry, and she gave me a hug afterward and told me "Thank you, Mommy." She is amazing.
  • And last but not least, I had lunch with one of my dearest friends this week to celebrate our birthdays, and another dear friend volunteered out of the blue to come babysit for me Monday afternoon so I could go run a few errands by myself. It was WONDERFUL. Another sweet friend let Kaida come over while I went to Raya's class yesterday and kept her for part of the afternoon so I could get Raya to take a nap. I have really, really nice friends.
So amidst the crap that has gone on this week, there have been some really sweet moments that have made me forget (if only momentarily) about the crap. My Heavenly Father is merciful in giving me those moments that help me remember what is really important. Maybe it's because some of the things that have happened this week have made me feel like it's me (and Donny) and Raya against the world, but I have felt the healthier part of my bond with Raya get stronger this week. Tonight I took her to the store with me and as we were driving, the song I used in this video for last year's Feeding Tube Awareness Week came on the radio. From the very first time I heard it, the lyrics have been so powerful for me. "I won't give up on us, even if the sky gets rough. I'm giving you all my love, I'm still looking up...When you're needing your space to do some navigating, I'll be here patiently waiting to see what you find...God knows we're worth it..." It makes me cry almost every time I hear it. The things I've been dealing with this week have made me overly emotional anyway, so I was full on ugly crying by the time I pulled into the Costco parking lot. Partly because I've watched the video so many times that I can see the pictures of her in my head as I listen to the song, but also because it reminds me why we are working hard at the things we're doing even when we don't feel like doing them. It reminds me why I need to be more patient and work harder. It reminds me that just because we make mistakes along the way doesn't mean that we've failed, and that even though the road ahead seems endless, we're still moving forward (most days). It reminds me that I am not in this alone and that I don't have to have all the answers right now. It reminds me why I have chosen to subject myself to scrutiny and criticism that sometimes come from making our story public. I know it's incredibly cheesy to say that all of that comes from the lyrics of a song, but it's true and I'm so thankful for that.

Thursday, December 20, 2012

A little rant about food allergies

*Rant warning. Sleep-deprived, crabby Mommy rant warning. Not directed at anyone in particular, just EVERYONE in general. I'm really crabby today.*
Food allergies are not a joke. They are not a matter of preferential dietary restriction and they are not an attempt to get attention. If someone tells you they or their child are allergic to something, THEY MEAN IT. If they tell you they are allergic to it, THEY ARE ALLERGIC TO IT. That means they can't eat it, can't eat anything that has that ingredient or its derivatives in it, can't eat anything that has touched that food, and probably shouldn't even eat off of a surface that has had that food on it unless it has been thoroughly cleaned. It does not MATTER what, if any, previous reactions they've had to that food. It does not MATTER if they've never had an anaphylactic reaction. It's really not even your business if they have or have not had a serious reaction to that food and the parent does not need to justify to you why you need to follow their instructions about food allergy safety with their child. The fact of the matter is that at any given point, they COULD have a serious reaction.

Even "mild" reactions can be extremely unpleasant for the person. Think of it this way. Remember the last time you got a mosquito bite and how much it itched and how annoying it was? Or the last time you got a stomach virus and couldn't stop vomiting or had painful stomach cramps and diarrhea and how miserable that felt? THOSE are symptoms of allergic reactions for some people. Itchy rashes, eczema, vomiting, diarrhea, extreme gassiness, sneezing, watery eyes, runny nose, hives, and swelling are all potential symptoms of allergic reactions to foods, not to mention airway constriction, heart rate depression, and organ failure. If you had a bad cold and your child didn't, would you wipe your nose and then use the same Kleenex to wipe your child's nose? Of course not, because you KNOW they will probably get sick. When you don't take a child's food allergies seriously, you are willingly subjecting them to any or all of those miserable symptoms, and possibly even putting them at risk for their FIRST serious reaction. So who CARES if the child does not have an anaphylactic reaction to something, if they have an allergy to a food, DON'T EXPOSE THEM TO IT. You do NOT want to watch a small child have an anaphylactic reaction and be hauled off to the hospital in an ambulance (or worse) because you didn't take their parents seriously when they told you about their child's allergies.
If you do not know what to look for, you can do a quick YouTube search and find all kinds of horrifying videos of people having anaphylactic reactions. This video explains the physiology of anaphylactic reactions. It's worth the 3 minutes.

*deep breath* I have had a frustrating week. There are many contributing factors, but today, the lack of acknowledgement of Raya's food allergies is at the top of that list. Having the home health company screw up our order again is coming in a close 2nd. Last time I ordered 3 Bard leg bags, they sent 3 pairs of diabetic socks. This time, instead of 3 Bard leg bags, they sent 20 "Open Urethral Trays With Red Rubber Catheter". I can't even comment anymore on that because "ridiculous" just doesn't even begin to describe it. I will admit that I laughed when I opened the box they sent last month and found socks in it instead of catheter bags, but it's not funny anymore. They also delivered her a different pump on Monday but neglected to call first to make sure I would be home to sign for it, so my friend who was babysitting had to sign for it and didn't know what to look for before accepting the pump. The one they brought had a COMPLETELY dead battery, which screwed up her feed schedule for the rest of the night because it had literally no battery charge and had to be plugged in, and you can't tether a 3 year old to the wall for 2 hours. Although at times I'd like to... kidding. sort of. 

But yeah, back to the food allergy thing. My rant is not directed at anyone in particular, but I just feel like food allergies in general are not taken as seriously as they should be. Unfortunately it often seems to be those who are close to the child who don't realize the importance of being careful. Heck, I will admit that I've made food-related mistakes with both of my kids who have food allergies. I've heard way too many stories from friends about their kids going to school and being given foods they're allergic to to play with as part of classroom activities, or parents not being made aware of the foods that their child is exposed to in the classroom (daily or for special occasions), or just plain not listening when the parent warns them about food allergies. This is simply not okay. Children, especially young children, do not usually comprehend their own food allergies. Even if a child knows he or she is allergic to something, they may not know that the thing they're allergic to is in the food being offered to them. A lot of kids actually CRAVE what they're allergic to and do not comprehend what will happen to them if they eat it. Exposure goes beyond simply eating the allergen. Some people have allergies so severe that airborne particles of that allergen can trigger severe reactions. Cross-contamination of toys or other surfaces can pose serious risks to those with severe allergies. Adults have a responsibility to protect children from food allergies, especially when they are in a position of authority over that child, whether it is babysitter, respite provider, school teacher, church teacher, or even just a gathering of family or friends where food is involved. If you know you have a nephew or niece that's allergic to nuts and you're in charge of providing the dessert, make something without nuts. If you're the preschool teacher and you want to do a fine motor activity, don't let the kid with celiac disease put Froot Loops on a string or let them play with Play-Doh. (yes, Play-Doh has gluten in it.) Give them something that doesn't have what they're allergic to in it or ask their parent to provide something, and scrub the heck out of the table and everybody's hands when they're done so they don't react to traces of the food on the table later. If you're not sure about something, ASK! As a parent, I do not expect the entire world to conform to my child's individual needs. However, I DO expect that at the very least, the environments he or she is compelled to be in are made safe for him/her, even if it means that others in those small environments have to make small sacrifices in order to ensure that savety. Understand that just because an individual has never had an anaphylactic reaction does not mean that the next exposure will not trigger one, so just don't risk it. This extends to other food-related conditions as well, such as celiac disease and eosinophilic disorders. Both are autoimmune diseases in which exposure to triggers will cause pain and suffering and neither should be taken lightly. Watch this video and you'll get it.

And if that doesn't do it for you, watch this story about a 7 year old boy who almost died because someone did not honor the "peanut-free classroom" rule in his class and sent in a snack that was not nut-free.

If someone tells you their child is allergic to something, BELIEVE THEM. Honor their requests regarding safety around food. Don't knowingly allow their child to be exposed to known food allergens and don't be complacent about checking ingredients. As the second video said, complacency can kill.

Wednesday, December 19, 2012

2 week post-op follow-up

My facebook status yesterday afternoon said:
"If you ever walk into a doctor's office waiting room and see kids swinging from the chandelier (figuratively, of course), don't judge their mother. She's probably been sitting there for over an hour and has used up everything in her bag of tricks already so she's resorted to letting them rearrange the furniture and rip all the little cards out of the magazines. Just sayin."
And that pretty much sums up how fun our surgery follow-up was. I had both of the little girls with me and they did GREAT for the first hour that we were in the waiting room. Especially considering that we were there at 1:30 in the afternoon when Raya normally would have been taking a nap (if it had been a nap-taking kind of day) or at least would have been playing at home. I was SO proud of the girls for behaving as well as they did because I know they were bored out of their minds after the first 20 minutes. I think that was about the point when they started moving the kid-sized chairs all over one end of the waiting room. I was chatting with another mom whose ADORABLE little girl had just had her G tube site revised because of massive granulation tissue. We had a good solid 45 minutes to discuss G tubes before her daughter got called back. I have come to expect that from the surgeon's office. It's ALWAYS a long wait. I block out half of the day when we have to go there.
We checked in at 1:20 for a 1:30 appointment, and it was about 2:35 when we got called back. By then, Raya was D.O.N.E. She was almost to her meltdown/beyond being able to communicate stage when we went back to weigh her in and in my frustration with trying to get her backpack off and get her on the scale (fully clothed with shoes and a wet diaper...) I offered a very empty apology to the MA. Something to the effect of, "I'm sorry, we've been here for over an hour already and she's had enough." She offered a very empty "I'm sorry about that" in return. If they were really sorry about making people wait for over an hour in the waiting room, they'd find a way to make things run more efficiently. *steps off of soapbox*
Raya was still really emotional when we got to the exam room. She was angry and screaming one second, and sad and crying the next, then smiling. It's hard to be 3 and have to go to so many doctor appointments where everybody is making you stand on scales and get your head measured and your blood pressure taken and wants to see you naked. And I mean that, it really is hard, especially when it cuts into naptime and happens so often. She was throwing such fits that I couldn't hear myself think, let alone answer the MA's questions. I also realized once we got there that I wasn't sure what the dosage of Raya's new med was in milligrams so I just had to give them my best guess. I'm usually so on top of things like that.
While we waited for the surgeon, I tried to occupy Raya by getting her to look at the Peanuts characters painted on the walls. We thought Linus was interesting. Without knowing the what the ideal G tube placement is for a cartoon character, it was hard to tell whether he was recovering from a G tube removal surgery or an umbilical hernia repair but he was wearing a bandage on his belly.
It made Raya forget that she was upset about whatever it was that she was upset about for a few seconds. Right after I took the picture, the surgeon came in to check things out. Raya has gotten really defensive of her stomach recently and it's been much worse since the scar tissue removal. She wouldn't let the surgeon see her G tube until he asked her nicely to lift up her shirt. She's developing boundaries for other people now, which I suppose is a good thing.
Her stoma didn't look too awful but it's really not where I'd like it to be. Here's how it looked yesterday just before the surgeon came in to see it:
Could be worse but could definitely be better. I told him that I knew this was a risk, but that I had really hoped it would heal better than this. I'm afraid by the time the granulation tissue goes away and it heals over, she's going to have just as much scar tissue as she did before the surgery but we knew that was a risk. Even so, I feel like it was the right move and I still think we can salvage it.
He did a silver nitrate treatment but only on the inner edge of the stoma where the new growth comes from. We'll keep doing them 2-3 times a week and have another follow-up in a month to see where we're at then. I'm really not excited about doing silver nitrate on her at home again but it does look better today than it did yesterday so maybe it will be worth it. We'll keep doing all the other things we've been doing too (using Mepilex dressing, calmoseptine ointment, taping the extension tube, changing the dressings 2-3 times a day, etc.) We've almost always taped the extension tube straight across the right side of her belly, which is fine, but sometimes it starts to make the granulation tissue bulge on one side so I'm trying to alternate positions with the tube. It's hard because Raya is really picky about things like that. She doesn't LIKE having it taped anywhere else. This is the other way we do it (when she'll leave it on):
It bugs her and she hates it but she also doesn't like the feeling of ripping tape off so for now, it's on.
We checked into the surgeon's office at 1:20 and checked out at 2:55 and the surgeon was in the room for LESS THAN 5 MINUTES of that time. Don't get me wrong, I love our surgeon, but that is just ridiculous. It's too bad we can't do call-ahead check-ins there like some of the emergency rooms advertise where you check in over the phone or online and they give you a time to show up so you don't have to wait for hours to be seen.
The girls ate suckers on the way home so Raya didn't go to sleep in the car. (I ate suckers on the way home too. 2 of them. I totally earned them.) She was tired & crabby but still happier than she had been at the doctor's office. We did her "nigh-night medicine" and she fell asleep on the couch exactly 50 minutes later. I still have mixed feelings about using it but right now, the positives are outweighing the negatives and it's a tiny dose so we'll stick with it a while longer.
And to end on a gross but funny note, you know you're a tubie momma when you walk past a puddle of puke on the sidewalk on the way into the surgeon's office and catch yourself thinking, "Hey, I wonder if that's from anybody we know!"

Saturday, December 15, 2012

Granulation Tissue 101

Granulation tissue is the nemesis of tubies everywhere. Some are lucky enough to never experience it and others are not. Raya has been one of the unlucky ones so far. It can happen with ANY type of stoma, not just feeding tube stomas. In case you've never seen it, here's what it can look like:
It is usually somewhere between light pink and bright red, shiny, and has kind of a wet appearance. These are just 2 examples. It varies greatly from person to person. The first picture was when Raya was 8 or 9 months old and the second was this week.

Granulation tissue is a result of the body's natural wound healing process. This process includes 3 phases (4 if you include the initial hemostasis phase, i.e. stopping the bleeding): inflammatory, proliferation, and maturation. In the inflammatory phase, the body's immune system triggers the release of chemicals and specialized white blood cells that flood the area and destroy any invading bacteria as well as "digest" any dead cells. This is the stage where the wound is swollen, red, and can be hot to the touch. The proliferation phase is where granulation tissue comes in. Granulation tissue is made of mostly collagen fibers and newly formed capillaries that carry needed blood flow to the area in order to bring nutrients and oxygen that are essential to healing and forming new tissue in the area. In most cases, granulation tissue is a good thing. It is the body's way of generating new tissue to close a wound. The maturation phase completes the healing process as the collagen fibers mature and a fibrous scar forms to fully close the wound. Despite what my anatomy textbook says, granulation tissue is delicate and bleeds easily.

In the case of a stoma with a medical device in it, the proliferation phase sometimes continues rather than moving on to the maturation phase, resulting in an excessive amount of granulation tissue. And boy can it be excessive. This is Raya's granulation tissue at just about its worst, back when she had only had her G tube for a couple weeks and the tube was the wrong size:
(and this is where her scar tissue came from) This was really bad. Her GI doctor's eyes just about popped out of her head when she saw it. The day before I took this picture, it hadn't been NEAR that big. We had already done a couple of silver nitrate treatments (which I'll get to later) and it was almost gone. Then that morning, she had a really bad vomiting/retching episode and BAM, there's this enormous granulation tissue. Doesn't it just make you cringe and put your hand over your non-existent G tube?

SO what do we do about granulation tissue? Here are a few things. This is by NO means an exhaustive list, just some things we've either done or that have been recommended to us:

1. Minimize friction.
The biggest enemy to a stoma is friction. Friction disrupts the healing process or causes the body to go back into healing mode and the granulation tissue starts forming again. The first thing you need to do is make sure that the tube fits properly. If the stem length is too long (which was the case with Raya's Bard button in the above picture), the tube needs to be changed out with the correct size, or if the tube can't be changed due to the tract not being fully healed yet, it needs to have a spacer added or have extra gauze around it to keep it fitting snugly. Having said that, we did #3 and you can see how that turned out. A properly fitting tube is important.
Another important part of minimizing friction is to stabilize the tube during feeds. When you connect an extension tube, there will be added weight tugging on the stoma unless you secure the tube somehow. Not to mention that it increases the risk of the G tube getting pulled out. We tried many different taping methods including trying out MANY different kinds of medical tape and taping the tubes in different directions. We had been told that taping it up and then across would help minimize the tension on the stoma but that method did not work well for us. Our preferred method is to tape it to Raya's belly (usually on the right side but not always) with Hypafix tape like this:
This was when she had a GJ tube and had to be fed through the J port and drained from the G port continuously, hence the 2 extension tubes. Interestingly enough, within a couple of months of getting her GJ tube, her granulation tissue went away and never came back. The reason for that is because with 2 extension tubes on 24 hours a day, it couldn't twist so there was little to no friction. (GJ tubes aren't supposed to twist anyway.) It was a beautiful thing.

We also tape it like this sometimes:
Taping the extension tube up and across can help reduce the tension on the stoma. The difficult thing for us with this method is that Raya has a lot of sensory issues and for whatever reason, having the tape anywhere other than across her belly really bothers her so she ends up pulling it off. Honestly, taping it this direction doesn't seem to make a difference with her granulation tissue but it does help some people. The bottom line is just keeping the G tube stable and supporting the weight of the tubing by securing it to something during feeds so it's not tugging on the stoma.

I'm not suggesting leaving extension tubes connected all the time (unless you're doing continuous feeds) because that will wear out the port, but it's a good idea to secure the extension to something while the feed is going, whether it's taping it to the belly, making a tag with tape around the extension tube and pinning it to clothes, or taping it to the diaper. Anything you do to reduce the weight hanging on the stoma and reduce tugging and pulling from the extension tube on the G tube will help prevent granulation tissue.

2. Keep the stoma clean.
I think this is fairly obvious but keeping the stoma clean is very important. Most often, we just use warm water. Occasionally we use mild soap, but that's really all you need. I read somewhere that using hydrogen peroxide can actually make granulation tissue worse, and soaps can be irritating, so it's really best to stick to water and maybe a mild soap. If there is ANY leakage coming out from around the stoma, it is a good idea to keep either gauze or a cloth G tube pad around it to absorb the leakage so that it doesn't turn into dry crusties that have to be cleaned off later. Just be sure to change it frequently if there is leakage.

3. Protect the skin around the tube.
If you have leakage from around the tube, there are a couple of things that should be done. First, if the button is a balloon button, be sure that the balloon has an adequate amount of water in it. Manufacturers of G tube buttons give a suggested minimum to maximum range for the volume of a balloon. If you're experiencing leakage from around the tube and are closer to the minimum range, add more water to the balloon. If you're already at the maximum range, the tube may be the wrong size. With Raya's Bard button, we couldn't change the tube because it was her original tube from surgery so it had to stay in for 6-8 weeks. The hospital apparently only had 2 sizes and used the smaller size, but it was still too long so the best we could do to keep formula from pouring out of her stoma was to use 2 packets (4 layers) of gauze to keep tension on the inside of her stomach and prevent the leakage. Because it leaked so much, we changed the gauze several times a day so the skin really didn't have a chance to get irritated.
This week since her scar tissue removal has been a different story though. I did have to add water to the balloon because it was just below the minimum recommended amount. I'm not sure why it was low but we're watching it to make sure the balloon isn't leaking since it's only been in for a week and the surgeon was the one that put it in. Because her stoma is healing from the surgery, she's had a LOT of goopy green stuff coming out of it. (and yes, that's the technical term). The goopy green stuff is normal, but there's been a LOT of it. It irritates her skin and turns into the aforementioned dry crusties, even WITH gauze around the tube. In order to protect her skin, we've been using Calmoseptine ointment/cream. It's an over-the-counter product used to protect skin from any type of bodily fluid irritant. I found it in the adult diaper aisle, so yeah, it's good stuff. I got a great big tube for about $8 and it will last us forEEEEEEEEEVVVVVVEERRRRRRR since we use a tiny amount on the end of a Q tip a couple times a day. (Calmoseptine is also available in Australia, Canada, and the Philippines)
So in summary, if there's leakage, try to prevent the leakage. If you can't prevent the leakage, keep the area clean and use a barrier cream like Calmoseptine to protect the skin.
**Note: G tube manufacturers (at least MicKey and AMT Mini One) specifically say NOT to use petroleum-based products (aquaphor, petroleum jelly, etc.) on G tubes because petroleum can cause breakdown of the silicone. This was verified for me by the manufacturer of MicKey via email.**

4. Triamcinolone cream (aka Kenalog).
Kenalog cream is a corticosteroid used for conditions like psoriasis. Corticosteroids have anti-inflammatory and anti-itch properties, which is why Kenalog is helpful for treating granulation tissue. It is available by prescription only. I wish I could say we're using it and it's helping, but we have not been able to get a prescription for it yet. Hopefully on Tuesday when we see the surgeon. I've also been told that steroidal nasal sprays help with granulation tissue but that's not something I would try without running it by the surgeon first.

5. Mepilex Ag wound care dressing.

Mepilex Ag is an antimicrobial foam wound care dressing that absorbs wound exudate and releases silver into the wound. (It looks green in the picture but it's really gray.) It comes in 4x4 sheets so for a G tube stoma, you can get 9 squares out of 1 sheet.
We tried to use it when Raya had her Bard button but because of the profuse leakage of formula from her stoma, we couldn't because it would get completely saturated with formula within a few minutes. Another road block we ran into was that it's considered a wound care product and insurance didn't consider a new G tube stoma to be a wound. {REALLY???} So we got a few samples from the surgeon's office but didn't really use them. Thankfully, I didn't get rid of it because we've been using it this week to try and ward off the new granulation tissue she's getting. I'm not sure how much it's helping but we'll keep doing it. The nice thing about Mepilex is that it has a gentle adhesive on the back so it will adhere to dry skin but it won't stick to the granulation tissue.

6. Silver nitrate sticks.
Silver nitrate sticks are the big guns in treating granulation tissue. In my opinion, silver nitrate sticks should be the last resort for treating granulation tissue. Many doctors (including our surgeon) disagree with me on that and seem to use that as the first treatment option. If you have a choice, try everything else and it doesn't work, THEN try the silver nitrate sticks. Silver nitrate is a chemical compound (AgNO3, in case you were wondering) that is used to cauterize wounds. When you use silver nitrate sticks, you are chemically burning the tissue. I've been told by many people who have had silver nitrate treatments that it's very painful. I didn't realize this but you can actually buy it from various sources without a prescription to use as a treatment for canker sores. Sounds like self torture to me but to each his own. I would NOT recommend buying them to use on granulation tissue though. Treatment of granulation tissue with silver nitrate should be done by a physician unless otherwise directed. Raya's was treated by her surgeon, her GI, and then we did it a couple of times at home under the direction of her GI. It was not pleasant.
If you do use silver nitrate sticks, it's a good idea to use a thin layer of Aquaphor on the health tissue around the stoma to protect it. (again, avoid getting it on the G tube since it can damage the silicone and I've also heard it can trap bacteria in the area, which is not good either) Be forewarned, silver nitrate will turn the tissue a grayish-black. We had been told by one of her doctors that it wasn't necessary to put aquaphor on the healthy tissue so we didn't and she ended up with a black ring around her stoma for a while. It didn't hurt her healthy skin, just stained it. Even the tiny little hairs that we didn't know were there turned black.
**Update: Another note about silver nitrate. When we first used it after Raya's initial G tube placement surgery, we were instructed to apply it to the whole surface of the granulation tissue. This time around, we've been shown to only apply it to the very inner ring of the granulation tissue closest to the G tube. The reason for this is because that is where the new growth comes from. Using it this way turned out to be less painful for her and more effective than applying it to the whole surface.

7. Cloth G tube pads.

Photo courtesy of Sugary Monkey. :)
Many people swear by cloth G tube pads instead of gauze to help heal & prevent granulation tissue. I've heard a lot of people say that once they started using cloth G tube pads, their child's (or their own) granulation tissue went away and never came back. That has not been our experience but hundreds of other people LOVE them. I do too, they're WAY cuter than gauze & tape, we just don't really use them very often. :) There are a lot of small businesses who make and sell them on their own websites or on Etsy. Most of them are parents of tubies or former tubies, so they know what works and develop products based on experience. Here's a list of several of those businesses.

We've tried 3 or 4 different "brands" of cloth G tube pads. I like them, but ultimately my dislike of keeping track of tiny things in our mountains of laundry wins out over my like for them. I was using them regularly for a while but then Raya kept having blood come out of her stoma so I stopped. I didn't want to stain the G tube pads and it's easier for me to see what's coming out of her when I use plain white gauze. I also like being able to just throw away the yuckies.

7. Other...
There are other home remedies for irritated stomas & granulation tissue as well. For irritation from leakage around the stoma, you can use a Q tip to apply liquid antacid like Maalox or Mylanta. This will help neutralize the stomach acid so that it doesn't burn the skin. Tea tree oil (aka melaleuca) is another over-the-counter option. Tea tree oil is said to have anti-inflammatory, antibacterial, and anti-fungal properties, as well as analgesic (pain relief) properties. If you've never used it before, it wouldn't be a bad idea to test it on another area of skin to make sure there won't be any allergic reaction.

I had really hoped we wouldn't have problems with granulation tissue again after Raya's scar tissue removal but it's coming back. We knew it probably would but really hoped otherwise. Just so you can see what it looks like, here's the progression we've seen over the last 11 days with the top left being the day of the surgery and the bottom right being yesterday.
(obviously removing old nail polish is not very high on my priority list.) Her granulation tissue is not the bright red that we saw when she was 8 months old but it seems to bother her more now than it did then. She's been very defensive of anyone touching her tube and tells me fairly often that her tubie hurts. (and this is the kid with the ridiculously high pain tolerance who was swinging from the kitchen table a couple days after breaking both bones in her forearm)

Like I said, this is in no way an exhaustive list. I know there are other creams and dressings out there that can help granulation tissue, these are just the ones I'm familiar with. The biggest items on that list are minimizing friction and keeping the stoma clean. Stoma care and preventing/treating granulation tissue is another inexact science that involves trial and error to see what will work best for you. What works for one person may not work for another, so these are just a few suggestions.
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