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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.**


Sunday, April 29, 2012

My baby is a big girl

Raya is turning into such a big girl. I've realized lately that by the time the other kids were her age, there was already another baby or almost another baby. As soon as you bring home a new baby, the older sibling all of a sudden looks huge. This time around there is neither but Raya suddenly looks and acts like a big kid anyway. She tries to copy everything the big kids do and say. She's bigger than all 3 of the other kids were at her age and it hurts when she plops down on top of you or steps on your feet. I want kidding when I said before that she's closing in on Kaida. They're only about 3 pounds apart now. I laughed when I saw them next to each other a few days ago because I realized that they were both wearing Kaida's 3T shirts and Raya's 24 month pants. She doesn't want help with anything anymore and protests when you try to help her. It adds on a lot of prep time when we're getting ready to go anywhere because she's not capable yet of doing some if the things that she doesn't want me to help her do. She screams in the car a lot lately because I won't let get buckle her own seatbelt despite the fact that she can't do it by herself yet. She also has decided that she needs to give herself meds now. It's resulted in Prilosec spraying in my face more than once because she starts pushing it before I've unclamped the tube. Last week I had gotten her meds ready and she wanted me to put the neurontin in her mouth. (she had just seen me give somebody else zyrtec from a syringe) I figured, what the heck, so I put a little of it in her mouth. She made the biggest yuck face I've ever seen her make and spent the next 10 minutes trying to wipe it out of her mouth with a wet wash cloth. :) She hasn't asked for meds in her mouth since then. :) In other news, she broke her record for the longest amount of time she's ever had a piece of food in her mouth. It was an oat from a multigrain Wheat Thin and she had it hidden in there for 4-5 hours. It appeared on the end of her tongue when I laid her down to change her diaper after her nap. Tonight I was talking to my grandparents on the phone and Raya kept climbing all over me. And jumping on the bed. In hindsight, letting her do that once was a bad idea even if it was as part of her OT protocol. :) She didn't have a nap today so she kept moving all afternoon and evening just to keep from falling asleep. Finally she sat down with me, and the next thing I knew she was passed out on the bed next to me. She's so cute when she's sleeping. :)

Thursday, April 26, 2012

GI Visit & Tubie Friends Delivery

We had a lovely visit with Raya's GI doctor yesterday. For whatever reason, Raya was having a terrible day. She was clingy and whiny and fussy all day long. Literally all anybody had to was look at her and she would start crying. She took a nap but I had to wake her up to go to the doctor. All the way to the appointment, she cried and screamed. When I let her help me carry the Tubie Friends that we brought with us into the clinic, she perked up a little. That lasted until it was time to take her dress off and get on the scale and then she had a meltdown.
Not much to my surprise, Raya has grown a LOT in the last month. At her last weight check 6 weeks ago, she weighed 12.835kg (28 lbs 4.7 oz). Yesterday, she weighed an unbelievable 13.63kg (30 lbs 0.8 oz). She gained a whole kilo, which is 2.2 lbs!! If she was an orally eating child, that would be very exciting but in this case, it means that we overcompensated when we increased her calories a couple of months ago. We've overfed her right into the 75th percentile. :) She's now within 3 pounds of her 4 1/2 year old sister. I thought they'd at least be teenagers before they started sharing clothes. :)
Here's what I think happened. Back during the time frame where she was eating a lot of oral calories (up to 300/day), we were subtracting the calories she ate from her total formula calories no matter what the source was. The 200-300 calories she was eating might have come from nothing but Wheat Thins and peanut butter, which obviously will not have as many nutrients as 200-300 calories of nutritionally balanced formula. Then she got sick and quit eating right at about the same time we increased her caloric intake by 90 calories per day, so not only did she go back to having 100% of her calories come from formula, but she also started getting an additional 90 calories per day. On the bright side, we know she's capable of putting on weight. :) It is SO strange to have that much control over a child's nutrition and weight management!

Overall, we had a very nice visit. I had very low expectations for Raya's behavior since she'd been in meltdown mode all day. Right before the doctor came in, she was laying on the floor screaming because I had made eye contact with her. It was just that kind of day.
When the doctor came in, she picked Raya up and carried her out into the hallway to get a Dum-Dum out of the box. She came back a happier girl and got herself nice and sticky while her doctor and I chatted. Things have been going really well for Raya from a GI standpoint the last few months. She's tolerating her bolus feeds very well, hasn't had any issues with vomiting or diarrhea, and just overall has been doing well. Due to the high weight gain in the last month, we're going to reduce her calories a little bit. We're going to trial her on a small amount of 1% milk to replace an equal amount of her formula and increase as tolerated up to 4 ounces. If that goes well, she'll be reduced back down to about 930 calories per day instead of 990.

The cultures that we did last week on Raya's stoma infection came back inconclusive. In her doctor's words, "They must have been contaminated because there was all kinds of funky stuff growing in there." :) The good news is that whatever the infection was seems to have pretty much run its course at this point so we don't need to do any antibiotics for it. She did make a comment about how thick the band of scar tissue around Raya's stoma is. We may have to do something down the road involving lasers and anesthesia but there's no good reason to do something like that right now. I think the scar tissue (which is a result of massive granulation tissue) has helped prevent new granulation tissue from being able to form so we'll just keep the scar tissue. :)

We discussed whether or not it's going to be beneficial to keep Raya on Periactin and decided that for now, the side effects are outweighing the benefits. When she was taking in more calories orally anyway, the Periactin seemed to help drive her hunger. I still don't believe that hunger was what actually motivated her to eat, but I think that it allowed her to eat without feeling uncomfortable due to the increased rate of gastric emptying that Periactin causes. In other words, she was eating larger quantities of the foods that she WAS eating because it wasn't uncomfortable to do it. However, after she was sick and stopped eating, that effect went away and has not returned. Each cycle of Periactin has been like playing Russian roulette with the side effects. A couple of times she's been just fine with no noticeable side effects and other times, she's had extreme mood swings, drowsiness, insomnia, and fun things like that. We're going to stop Periactin indefinitely for now but Dr. S left it up to me to decide at any point that I want to put her back on it. (I really do appreciate that about her!)

I mentioned briefly before that we made our first clinic delivery of Tubie Friends yesterday. :) I wanted to just bring them a couple first so they could see what they were and so that they wouldn't have to find a place to store a whole bunch of them. Due to the aforementioned Raya meltdown, I forgot to take any pictures, but the doctor & MAs were excited and really liked them. Seeing their reactions made me really excited to get more of them done and take them in. In case you're not familiar with the organization, Tubie Friends provides stuffed animals with feeding tubes and other medical devices to children free of charge. The organization is in the process of applying for 501c3 Non-Profit status but for now, they are operating solely on donations from individuals.

This organization is doing something amazing for children. I would venture to guess that most parents of children with feeding tubes have had little or no exposure to them until their own child has one. This process often happens quickly and can be traumatic and overwhelming for a child and for their parents. A lot of children with feeding tubes also have other medical conditions that mean frequent hospital and doctor visits with a lot of poking and prodding. Tubie Friends was started by some mothers who had seen the benefits of their own children having stuffed animals with the same medical devices that they had to accompany them to these appointments and wanted to share that support with others.

I saw this myself with Raya. I had never planned on making her a doll or stuffed animal with a feeding tube in it because I didn't really think she would be that interested. I ended up doing it anyway and couldn't believe how excited she got when she saw her doll with a "tubie" in it just like hers. That was when I decided that I wanted to be involved with Tubie Friends, so I volunteered to be a "Tubie Friends Surgeon". If you would like to contribute to Tubie Friends and help provide this meaningful service to kids like Raya, click here for details about how to help. If you know a child who would like to have a Tubie Friend of their own, click here for an application.

Tuesday, April 24, 2012

To the parents of new tubies

Lately I've been talking to several moms who are brand spankin' new at this feeding tube business. Hearing them talk about the feelings they're having, the things they're worrying about, and how exhausted and overwhelmed they feel has made me think a lot about how I felt when we were new at this. It was HARD. To all of you parents who have babies, toddlers, or even older children who have brand new feeding tubes, here are some things you need to know:
1. You are exhausted, you feel overwhelmed, you feel inadequate, you don't feel like you know what you're doing, you're worried about your baby/child's future, you're tired of vomit, and you wonder if any of this will ever get better. IT WILL! Your child's problem will not go away overnight. It may not go away for months, years, and maybe not at all, but you WILL find a routine. It will change often, but you will adapt. Medical conditions may stay the same, but YOU will change. You will learn more every day about how to live with the feeding tube and you will become more confident and comfortable with your new normal. You might not get all the answers you're searching for, but answers don't always equal progress, and progress doesn't always depend on answers. My mantra for the first 18-ish months of Raya's life was "It won't be like this forever." I had no idea when it would get better, but I believed that it would and just kept telling myself that. :)

Mommy & Raya, 4 weeks old and pre-NG tube. I was much more tired than I look. :)
2. NONE OF THIS IS YOUR FAULT. I knew deep down that Raya's dependency on a feeding tube was not my fault, but when you're the mom, you're supposed to have all the answers. In my head, I knew I had done everything I could to help Raya feel better even before I had a clue that a feeding tube was going to be considered. I had gone on an elimination diet where I removed everything that possibly could have bothered her out of my diet. It didn't work. I stopped breastfeeding and pumped so I could add rice cereal to the milk for added calories and thickness and feed it to her out of a special bottle to reduce the air she swallowed. It didn't work. I fed her every 3 hours around the clock and held her upright for half an hour after every feeding. It didn't work. I asked her pediatrician to put her on Prevacid. The Prevacid didn't work. In spite of our exhaustive efforts to do whatever we could to help her feel better and gain weight, Raya's problems were beyond anything we could do at home and she needed the tube. Even though I knew in my head that I had done everything I could have, there was still a part of my heart that felt like I should have done more. If you're feeling this way, you need to let go of it. As parents, we have superhuman love for our children but we do not have superhuman abilities to heal their bodies when they don't function properly. If we did, NONE of our children would have feeding tubes.

3. Just get the G tube. If your child's doctor has ever brought up the subject of getting a G tube, they are probably trying to give you the subtle hint that your child is going to have a feeding tube for more than just a couple of months and they know that living with a G tube is better in the long term than an NG tube. In hindsight, after Raya had gotten her G tube, I realized that all of those times when her doctor had asked me if I was ready to move on to the G tube, she was really just trying to tell me that this wasn't going to go away quickly. I didn't understand that at the time and didn't want to believe that Raya would need a feeding tube for more than just a few months. We were pretty naive about that. I wanted a diagnosis so we could take a course of action and resolve the problem so we could get rid of the feeding tube and didn't quite understand or want to accept the fact that it wasn't going to happen that way for us.
For at least the first 3 or 4 months that Raya had her NG tube, I was operating under the assumption that because an NG tube doesn't require surgery, that it's less invasive than a G tube. I no longer believe that. Raya had an NG tube for 6 1/2 months. During that time, I know of at least 62 times that the tube came out and I had to put it back in. This meant that I had to wrap her tightly in a towel so that she couldn't get her arms free, sit over her and carefully hold her still with my knees, hold her head still with one hand, and put the tube in with the other. (See How To page for NG tube videos.) Sometimes it wasn't that bad and other times it was very traumatic for both of us (and our neighbors if the windows were open). I defy anyone to tell me that having an NG tube placed at least 62 times in 6 months is not more invasive than a surgery that typically only requires a 24 hour hospital stay and a 2-3 week recovery. NG tubes are MUCH more invasive than a G tube. (in my humble opinion)
Before her surgery, I was hung up on words like surgical, permanent, and invasive. I didn't have any other parents to talk to whose kids had lived at home with an NG tube and switched to a G tube. I don't regret giving ourselves ample time to do our research and become comfortable with the decision to put in a G tube. Logistically we weren't able to put it in sooner because of conflicts with the GI doctor and surgeon's schedules, but if I had it to do over again, I would have had it done sooner.

4. Support is available online, so go and find it. This includes emotional support AND technical tube-related support! I did a lot of things by trial and error that I could have avoided if I had realized that resources existed online. When our home health company dropped off the feeding pump & everything that went with it, the one thing they didn't bring me was an operator's manual. We learned our way around the Kangaroo Joey pump and then later the Zevex Infinity pump without the help of an operator's manual because it didn't occur to me until much later that the manuals were available online. Some of the medical supply manufacturers have AMAZING websites and great social media pages. (MicKey and AMT are on facebook, Zevex has a lot of techincal information on their website, etc.)
I started reading heart blogs because so many of those kiddos have feeding tubes too. Eventually I googled something about feeding tubes and came across a blog about a little girl whose story was similar to Raya's. She had a link to www.feedingtubeawareness.org and the rest is history. :) Answers to any possible feeding tube related question can be found on the website and/or the facebook page. There is also a wealth of knowledge in all things special needs related to be found at the Mommies of Miracles website and facebook page. Support is out there so don't try to navigate this alone.

5. The acute care/discovery phase won't last forever. Eventually they'll run out of tests whether you have a diagnosis or not and you'll get to the maintenance and progress phase, which is still busy but more consistent and much less hectic. For us, this happened around the 2 year mark.

6. The feeding tube is your best frienemy. You will hate it for all of its inconveniences and resent it because it represents the ways you feel like you have failed at the basic task of feeding your child. At the same time, you will learn to love it because it means that your child is alive and MUCH healthier than he or she would be without it. You will learn to love the little perks, like being able to feed them while they're sleeping, run pedialyte into them when they're sick so they don't get dehydrated, and never having to fight to get them to take medicine. Loving the feeding tube is not easy but it makes life with a medically complex child so much less stressful.
Being in the mindset of getting rid of the tube as soon as possible no matter what is a very stressful way to live because there is so much of the process that is out of control of the parents. Some things just can't be forced and have a good outcome. A child deserves to have a positive relationship with food, and forcing food on them when they're not physically capable or mentally and emotionally ready will not foster that positive relationship. I'm not saying that you should give up on your child ever getting rid of the tube, but it's SO important to view the tube as a tool in your child's recovery and not push too hard too soon. Some kids, due to diagnosis, will always need a feeding tube. For other kids, the time for pushing to get off the tube will come. Let them discover and explore food at their own pace and take advantage of the feeding tube while it's there. As many negatives as there may be about having a feeding tube, it is also a security blanket and a safety net.

7. You have a voice as your child's health care advocate and the sooner you find it and learn to use it, the better off your child will be. Generally speaking, hospital employees do want what's best for patients. I think most of them do what they do because they enjoy at least some aspect of it. We've had dozens upon dozens of nurses, doctors, and medical assistants and there were only a few of them that I felt like were unhappy with their jobs. You can tell when someone doesn't enjoy what they're doing.
For the most part, I have been treated like a valid part of Raya's health care team but there have been times where decisions have been made without a doctor or nurse sharing that information with me or explaining why they're doing things. Ultimately, every situation like that has led to conflict and frustration, and the times that were the most frustrating were the ones where I didn't speak up and voice my opinions or ask enough questions.
There are two that stand out in my mind. One was the time that an ill child was put in the room with my well child in the middle of the night. I was LIVID when I woke up in the morning and found out about it but I wasn't bold enough to speak up and voice my concerns. That child had NO business being in Raya's room and I can guarantee that (if the hospital still had shared rooms) nothing like that would ever happen again after that experience.
The second was after Raya's G tube surgery when the doctor gave orders to switch from Pedialyte to formula. At the time, Raya had serious vomiting problems and I knew full well that no matter what feed rate they put her on, she was going to vomit first thing in the morning. As soon as I heard the feed schedule that the doctor had put her on, I knew it was going to cause problems. He had her continuous rate at 75ml/hour (which was faster than her usual rate) and her "bolus" rate at 45ml/hour for 2 hours at a time (which was slower than her usual bolus rate) becuase we had been trialing bolus feeds just before that admission. (A bolus feed is supposed to be short and fast like the equivalent of eating a meal and a continuous feed is supposed to be long and slow.) Once again, I went along with what he ordered without discussing it with him even though I knew his plan was going to cause problems. I don't have a lot of regrets but looking back, I wish I had trusted my own instincts and spoken up in both of those situations.

 
8. There is NOTHING wrong with asking questions!! Ask questions until you understand what, why, how, when, where, and who. If one person explains something and you don't understand them, let someone else explain. The hospital environment can be so overwhelming, especially when you're trying to learn in a few days what nurses go to school for a couple of years or more to learn. Don't feel bad if you don't remember everything all at once and never feel bad about asking the same question more than once. You're not the first one who has gone through this process and you won't be the last. Lean on those who have been where you are and someday you'll be the one that people are reaching out to with questions.


9. People are going to stare, ask you questions, and say stupid things, all of which will probably hurt your feelings on some days. 99% of them won't mean for their comments to be insensitive or rude. Some of them genuinely want to know, others are speaking in judgement so they can feel better about themselves, and some were just born without filters (or common sense). There are a lot of questions that are difficult to ask without sounding rude, like "what's wrong with your baby?". You will get tired of hearing, "Is she eating yet? Is this something she'll grow out of? How long will she have the feeding tube? Was she a preemie? Has she been tested for XYZ syndrome yet? My friend's ex-brother-in-law's cousin had a baby with that EXACT SAME PROBLEM and they fixed it by (fill in the blank). Did you eat (fill in the blank) during your pregnancy? You should take her to a chiropractor. Have you tried essential oils? What you need to do is (fill in the blank). Maybe you just haven't tried the right food yet. I bet if you gave her (fill in the blank) she would eat it." and so on. Like I said, most are well-intentioned, but when you're already questioning everything yourself and feeling like your best isn't good enough, those comments can sting. Or burn. Or just cut your heart out. It depends on the day and who's asking. I've found that having pre-formulated answers to those questions helps. Even if the person asking doesn't really intend to get solid answers out of me, they're going to, dangit! Even 2+ years later, some questions still bother me but I try not to let that show and just give the best answer I can give. I feel like I owe it to Raya and every other person with a feeding tube (and all her other diagnoses) to be a good ambassador by teaching people and spreading awareness with a positive attitude, even if I feel like screaming at them. I also keep a running list of the dumbest questions people have asked me. At the top of that list is, "Does she wear that helmet because you dropped her on her head?" Which brings me to #10:

10. FIND SOMETHING TO LAUGH ABOUT!! If you can't change the situation you're in, you might as well find something to laugh about, right? One day I took Raya to a therapy appointment with her Anat Baniel Method therapist. Her office was 60 miles from home and it took us a solid hour to get there. At that point, Raya almost always vomited immediately after a car ride, so I would always turn off the car, run around to her door, and yank her out of her carseat as fast as I could so she'd vomit on the ground instead of in the car. (hence the stain on the floor in the garage) On this day, I got Raya out of the car and went into the clinic thinking that the vomiting was done for the moment. During these appointments, I was always within arm's reach with a cloth diaper to catch anything that came out because it happened so frequently. While her therapist was working with her, we heard/saw the signs that something was coming up so with cat-like reflexes, I reached down and stuck the burp rag in front of Raya's face. I had underestimated the force with which it would come flying out of her mouth, and my hand was too close to her face. Instead of being absorbed by the burp rag, the stream of vomit hit my hand, shot straight up in the air, and came down directly on my head. The therapist quickly went to get me a towel and we shared a pretty good laugh. Sometimes you just HAVE to laugh!

Just remember that it won't always be this way. 

Saturday, April 21, 2012

Raya's first ice cream cone

The kids and I worked hard all day today on our list of chores. Even Raya had work to do:


I figure it's about time for her to start putting her own medical supplies away, right? :)

Since we got almost everything on the list done and it's been so miserably hot today, we took the kids for ice cream. We weren't going to buy Raya one but we knew she wouldn't be content to sit and watch the big kids eat theirs. Usually we just let her have tastes of what we have. She had no idea what she was talking about but she was very excited about getting an ice cream cone just because the big kids were. :) We bought her one, admittedly to avoid her throwing a fit. Donny ate a bit of it to keep it from spilling everywhere and then handed it to her.



She said "Eye fweem!" and had a lick followed by a surprised cold face. :) She enjoyed the little bit of it that she had but Donny scooped most of the ice cream out. He also took a big bite out of the cone to show her that it was edible too. She had a few nibbles of the cone and kept trying to trade me her soggy, half-eaten ice cream cone for my French silk pie blizzard. Dream on, kid! Then she decided to pretend that she was a baby and wanted me to feed her. (?!?!?!) Of course I couldn't pass up an opportunity to make up for lost moments so I obliged her. She let me fed her 3 or 4 bites:


As we were sitting at the table with all 4 of our sweet kids licking away at their ice cream cones, we realized that it was the first time we have ever bought Raya food. Kinda bittersweet. When all was said and done, she had probably eaten a couple tablespoons and a tiny bit of the cone and that was pretty good if you ask me. :)

Friday, April 20, 2012

From MicKey to Mini

Raya has been a member of Team MicKey since October 2010:

When we had her G tube surgery follow-up appointment, I had picked out a Nutriport G tube. It had several features that appealed to me after having dealt with a Bard button for a month. (Bard buttons don't have a locking mechanism to keep the extension tubes from coming unplugged, which equals a LOT of messes, especially when it's in the stomach of a 9 month old who gets fed 22 hours a day.) That plan was foiled when Raya started having gastric bleeding and had an endoscopy with a failed attempt at a GJ tube placement. Since the hospital only had MicKey buttons on hand, we went home that day with a MicKey G tube. At that point, I didn't even care that it wasn't what I had picked out at the surgeon's office because it was 1000x better than the Bard button. :)

A month later Raya was still having gastric bleeding and a whole lotta' out-of-control vomiting so she was admitted and got a MicKey GJ button. She had that until last July when her little tummy was finally ready to be fed again and we switched her back to a MicKey G button. I've been told many times since then that the AMT Mini ONE button is better than the MicKey button, that it's smaller, lower profile, etc., but for whatever reason (like maybe my resistance to change) I've stuck with the MicKey. Until yesterday, that is. :)

For about 10 days, Raya's stoma has looked a little iffy. Somehow we've made it through 20 months of having a G tube without any stoma infections and I feel very lucky about that but the streak had to end sometime I guess. :) It started out with a lot of redness in her scar tissue followed by spreading of the redness and red streaks extending out from the stoma. Then there was the excessive amount of goop, crustiness, funky sweet smell, general irritation, etc. It really didn't look BAD but it looked out of the ordinary for Raya:
There was also a little red spot that you can see on the left side of the picture. It looked kind of like a pimple so I started to worry that it might be MRSA or something. We went in a few days ago to get it swabbed and in the mean time, it's definitely looking better so hopefully whatever it was is running its course and we won't need to put her on antibiotics. We'll be seeing GI this week and find out if anything grew. In the mean time, we're being very careful and keeping it covered just in case but it's looking a lot better.
So to make a short story long, due to the ridiculous number of times that her MicKey button has gotten pulled out in the last 9-ish months since we went back to a G tube, I decided it was time to try something different. Two things drew me to the AMT Mini ONE:

1. It's MUCH lower-profile than the MicKey button which means less likelihood of the tube getting caught and pulled out when Raya's climbing out of her crib or accidentally kneels on her extension tube and rips the tube out:

2. The shape of the balloon that holds the button into the stomach is different. Here's a comparison of the balloon shapes:

I'm hoping that the wider, flatter balloon shape will help keep the tube from popping out so easily.

Our new GI nurse ordered the tube for us and I made the switch yesterday. Out with the MicKey, in with the Mini!
I'm already asking myself why I waited so long to try it. :) Don't get me wrong, I had no problems with the MicKey button, it just seems like maybe this button is a little more suited for a very busy girl who has a knack for getting her tube pulled out. :)

A few fun pictures

It's been a crazy couple of weeks around here and the pictures have been piling up on my phone. I keep meaning to post them but just haven't gotten to it, so here they are. :) Little missy loves mischief!
"helping" me get her Hypafix tape ready
Having a swig of Pedialyte
Putting on Daddy's shirt
Green smoothie moustache, and yes, she did have a few sips of it
Drinking water out of Mommy's contact lens case. Yummy!
Sucking water out of the soaking wet teddy bear actually made the contact lens case look good. :)
Kaida and Raya came with me to bring Whitney her Tubie Friend. Feel better soon, sweet girl!

Visiting our sweet friend Whitney (or "Whit-na-nee" as Raya calls her) who is recovering from a pretty major surgery. Raya really liked Whitney's glow worm. :) Whitney is having a really rough time recovering from what turned out to be a much more invasive survey than anyone had anticipated and our prayers are with her and her parents. Some kids just have it rough.

Monday, April 16, 2012

Kathie Lee & Hoda's can o' worms

The Today Show on NBC ran a story today that has been making big waves amongst the members of the feeding tube community. Really big waves. The title of the article by Linda Lee of the New York Times is "Desperate brides try feeding tube diet". The content of the article is really nothing new. It's all about brides going on crazy fad diets in order to shed a few pounds before their big day. It lists several diets (Master Cleanse, HCG, Atkins, etc.) and gives examples of women who have been able to lose a quick 15 or 20 pounds before their wedding. Then it takes a rather despicable turn.

It seems that there is a doctor in Florida who has started offering a "feeding tube diet" to people who want to lose weight quickly. The diet is called the K-E diet and is more widely known in parts of Europe as the KEN or "ketogenic enteral nutrition" diet. The story talks about a woman who wanted to lose weight quickly in March so that she could go dress shopping for her upcoming wedding in June. For a price tag of $1500, she went to this physician's clinic and had a nasogastric feeding tube placed through which she would be fed a ketogenic formula of 800 calories per day for 10 days with no other food being consumed during that time. This formula throws the body into a state of ketosis, meaning that the body is burning fat rapidly. I know that sounds like a good thing, but it's not because the body is in crisis mode. (I will talk more about the ketogenic diet later.) The NG tube prevents the person  from having to drink the formula. (I was going to say "patient" instead of "person" but I don't think the word really fits this situation.) In this case, the woman had the tube removed (which sounds more complicated than it really is, Raya "removed" hers just by sneezing a few times) after 8 days instead of 10 because she lost the 10 pounds she wanted to lose more rapidly than expected and reached her goal weight of 127 pounds. Yep, that's right. She weighed a whopping 137 pounds and NEEDED to lose those horrid 10 pounds SO badly that she just HAD to get an NG tube and use an 800 calorie per day ketogenic formula to do it so that she could go WEDDING DRESS SHOPPING.

I'm trying not to pass judgement on women who obviously are feeling insecure about their bodies and want to look good on their wedding day, but I think that using an NG tube and ketogenic diet to shed a few vanity pounds takes extreme and ridiculous to a whole new level. Here are the ways that this story bothered me:

1. I don't understand why it's really necessary to even use an NG tube for this diet. I loved this statement by Dr. Scott Shikora in regards to low calorie diets: "...any caloric restriction will lead to weight loss. “The novelty is, they shove a tube in your nose,” he said. It doesn’t matter if it’s through a tube, a straw, a meal plan,” he said. “They all work, if someone goes from 3,000 calories a day to 800.”
And he's absolutely right. Cutting calories leads to weight loss. Why is it necessary to use a feeding tube and ketogenic formula which both come with potentially serious health risks in and of themselves when you could accomplish the same thing by eating nothing but lettuce for 10 days? If all she drank was 800 calories' worth of vegetable juice or Slim Fast for 10 days, she would probably lose weight that way too, if for no other reason than the diarrhea that would likely result from 10 days of nothing but liquid. (Believe me, liquid diet=liquid poop. Ask Raya.)

2. If you're planning a wedding months or years in advance, you have plenty of time to plan a healthier lifestyle that can give you better and longer lasting weight loss results than a risky crash diet. It's just common sense.

3. Ketogenic diet. Want to know what the real purpose of the ketogenic diet is? Ask a child with a seizure disorder. Kids with seizure disorders often start out the treatment of their disorders by trialing different medications. These meds are cruel. They have awful side effects. Sometimes they work and a child can go from having a hundred seizures a day to maybe a dozen or two. There are all kinds of seizures with varying degrees of debilitation involved, and when the meds don't control the seizures as well as they need to in order for the child to function, desperate parents and physicians sometimes try putting the child on a ketogenic diet to help alleviate the seizures. This diet is almost always started in the hospital under direct supervision of physicians, dietitians, and nurses. Ironically, it is a high-fat and low carbohydrate diet that induces a state of ketosis where the body burns fat instead of carbohydrates. The diet is strenuous on the liver and kidneys and as such, patients are monitored closely for signs of liver and kidney failure. Other possible risks are kidney stones, bone fractures, high cholesterol, constipation, dehydration, and slow growth. Does this really sound like something that should be used to shed a few vanity pounds?

4. I'm kind of sickened by the fact that a licensed physician would go so far in his quest for the almighty dollar that he's putting feeding tubes that are intended to SAVE people's lives into people who, by his own admission, just want to lose a few pounds. Here's what he said about it, “At first I decided not to do it for people who just want to lose a few pounds,” Dr. Di Pietro said. “But then I thought, why should I say 5 or 10 pounds are not enough? People want to be perfect.”  He outright admits that he's exploiting the insecurity of people who "just want to lose a few pounds" by offering them this...unique diet. He uses a lifesaving medical intervention as a gimmick to attract people who don't want to use safer methods of dieting. To me, that walks a very fine ethical line.

On to the next portion of my diatribe. :) After the original story aired on the Today Show, the segment was re-aired on the Kathie Lee and Hoda hour. This was the part that really got to me. In the past 2 1/2 years, I feel like I've developed a pretty thick skin when it comes to feeding tube related things, but I have to admit this part stung a little bit.
I suppose I shouldn't have expected any amount of class from the two of them in their delivery of this story, but their complete lack of it was a little bit surprising. They started out by saying that there's a new diet trend using feeding tubes that according to Hoda is "actually kinda sick" and according to Kathie Lee is "ingenious". They go on to talk about how the person gets the tube put in their nose and then they have to carry this BAG with them and they have to SLEEP with it and take it to work with them. (oh, the horror) Hoda starts to mention something about the risk of infections with the NG tube but then scrunches her nose in disgust and asks, "And if it gets knocked out? What if you fall down?" giggle, giggle, giggle. As if that's really the worst thing that could happen to someone. (and yes I'm watching it right now, and yes my eyes are stinging a little again as I reach for my kleenex) It wasn't the words they were saying that was a problem, it was the attitude with which they delivered the story. It was all a big joke to them.

Well let me tell you, Kathie Lee Gifford and Hoda Kotb. Let me tell you what happens when you have to carry "that bag" around, and what happens when it gets knocked out or you fall down. Well, actually, let's start with the way people stare at you when you have a tube in your nose. It doesn't matter how old you are, people stare. Some stare in innocent curiosity, some stare in disgust. When you have a toddler that can barely walk and they're toddling around wearing a tiny backpack with a tube coming out of it, people stare. They make comments like, "What a cute little backpack! Where did you get it?" (from my home health company to the tune of $115) They sometimes ask you why your baby is wearing a backpack. If you carry the backpack for them, people look at you like you're horrible for putting your child on a leash. The pump always beeps at the most inopportune moments. And guess what, Kathie Lee and Hoda. The tube DOES come out. And guess who gets to put it back in. ME. That's right, I get to bind my baby in a blanket with her arms tucked down at her sides so she can't move, put her on the floor, straddle her so I'm keeping her from moving but not squishing her, put one palm on her forehead to keep her head still and slightly tilted back, and then run the tube up her nose and down her throat while she cries and gags and chokes and screams. Then I get to try to hold it down in place with one hand while I stick a piece of tape on it with the other hand (tape which will cause her skin to blister within a few days) and then get out my stethoscope to listen to her stomach and make sure it's in place. Then I unwrap her and hold her close until she's done screaming. That's what real life with a feeding tube is like. But I guess you probably don't know about that part because a story like that is sad and doesn't get the same ratings as an outrageous fad diet story.

When I saw the first story air this morning, I actually kind of laughed about it because it is just so ridiculous. The fad diet aspect of it is, for lack of better words really stupid, but the part that really upset me was the complete and total lack of respect or empathy for the people who use feeding tubes because of genuine need. There are so many people who suffer through painful diseases like Eosinophilic disorders that cause the body to attack itself in the presence of food who have no choice but to live off of nothing but hypoallergenic formula that really doesn't taste good. There are people who would drown every time they took a drink of something if they didn't have feeding tubes because they are unable to swallow without food or liquid entering their lungs. There are those whose stomachs and intestines have suddenly shut down without apparent cause or warning. There are others like Raya who have had such painful and negative experiences with food that they become physically ill at the mere thought or sight of food. There are people who have had parts of their digestive systems removed due to cancer or other diseases and are left with no option but tube feeding.
These are tiny premature babies, toddlers, older children, teenagers, young adults, middle aged adults, and the elderly. They and their families deal every day with the physical and psychological ramifications of being forced to be fed through a tube in order to survive, and stories like this only further perpetuate the negative stigma that none of us in the tube feeding community want our loved ones to have to face. The woman in the story mentioned that she couldn't even go into her children's school because all the kids would be scared of her. How would she feel if it was her daughter that was forced to wear a feeding tube taped to her face and walk into that same school every day where her own classmates would be scared of her?
I've tried to keep an even keel and not be melodramatic about this, but I really felt like I needed to address it. The content of the story, albeit ridiculous, was not what bothered me. To each his own, if you want to pay $1500 to voluntarily shove an NG tube up your nose and starve for 10 days on 800 calories of formula, that's your business. The part that bothered me was the flippant giggling and tone of disgust when talking about feeding tubes. I know they probably didn't intend to insult people like me, but their attitude was hurtful. I realize that their disgusted looks and mocking laughter came as they were watching footage of a tube being inserted into an adult woman's nose, but when I see an NG tube, I can't stop the images of my sweet little baby screaming while I put the tube back in for the umpteenth time from flooding my mind and there is NOTHING even remotely funny about that. They ain't pretty but dangit, that awful beautiful little yellow tube saved my baby's life!

They ticked off the wrong group of people, by the way. You should have seen the way that all the tubie mamas from Feeding Tube Awareness lit up KL & H's facebook page today. :) Anyway, I'm generally not one to cause a scene or ruffle feathers but in an uncharacteristic move, I sent an email to the Today Show. Here's what it said:

To whom it may concern:
I saw the story that ran this morning on Today and on Kathie Lee & Hoda about the extreme diet involving brides using nasogastric feeding tubes for rapid weight loss and I'm struggling to even put my reaction into words. I am the mother of a 2 1/2 year old girl who has depended 100% on a feeding tube since she was 2 months old for all of her nutrition, hydration, and medication needs. To say that life with a feeding tube has been a struggle would be an understatement. I am a staff member for the Feeding Tube Awareness Foundation which is based out of New York, and stories like the one you ran today accomplish the exact opposite of what our foundation is working tirelessly to do. As parents of tube-fed children and also many adults who are tube-fed themselves, FTAF is trying to share the POSITIVE aspects of what feeding tubes can do for people who are unable for whatever reason to consume enough calories and fluids by mouth to sustain their own lives and help families cope with the struggles of life with a feeding tube. There are thousands of reasons why babies, older children, teens, and adults end up needing feeding tubes that are LEGITIMATE reasons. A bride using an NG tube for the purpose of shedding a few vanity pounds is a mockery what is intended to be a lifesaving medical intervention. There are also thousands of families in the US who fight month after month with their insurance companies (IF they're lucky enough to HAVE insurance) just to get basic feeding tube supplies and specialized formula covered by insurance and these women are going out and spending $1500 just to lose 20 pounds in a rapid and unhealthy way. It's absolutely ludicrous.


To be honest, that part didn't bother me nearly as much as the way that Kathie Lee and Hoda talked about feeding tubes. Their flippant disgust for the tube that has saved my daughter's life every day since she got it is offensive and hurtful, and not just to me personally. That exact attitude embodies the entire purpose behind the Feeding Tube Awareness Foundation, which was started as "a means of supporting parents of tube-fed children and raising positive awareness of tube feeding as a life saving medical intervention." I understand that inflammatory stories such as this one get good ratings, but in the future please do your research before running a story that sheds such a negative light on something that, when used for its intended purpose, saves millions of lives throughout the world. PLEASE consider running a positive story about feeding tubes and the children who depend on them, like my daughter Raya. Her story can be found on my blog at www.agirlandhertube.blogspot.com and on this video: http://vimeo.com/36259981. Please also visit www.feedingtubeawareness.org and the Feeding Tube Awareness Foundation facebook page. Traci Nagy is the founder. She lives in New York and would be an excellent point of contact should you decide to run a story.
Sincerely,
Brandis
So there you have it. Nothing may ever come from that email but at least I've said my peace and maybe somebody at NBC will read it and learn something. Aside from the purpose of empowering parents and people who are tube fed, this is why the Feeding Tube Awareness Foundation exists. I know a lot of people want a formal apology from Kathie Lee and Hoda, but frankly I don't care if they apologize. I think if they apologized for everything offensive they ever said or did on their show, that's all they'd have time for. I would rather have the Today Show bring some children and adults whose lives are saved every day by their feeding tubes onto their show and help us show the world what they're really supposed to be used for. Positive awareness is so important to everyone whose lives depend on feeding tubes. They have enough to deal with without people making light of their lifeline.
The end.

Sunday, April 15, 2012

Happy 100th!

This weekend has been a pretty exciting one in our family. Raya's great grandpa turned 100 years old on Saturday and we had a big party to celebrate.
We were a little worried about how Raya would do at the party since it sounded like a recipe for disaster. Lots of people, lots of noise, huge crowded room, food, and no nap. She surprised us though, and seemed to really enjoy herself. She was a lot more comfortable than she was at our family Easter gathering but being at an assisted living facility, this was a little more calm than Easter. :)
Raya wanted to be held a lot still, which is one of the ways she copes with crowds, so she sat on her Grandma's lap and had a little chat with Great-Grandpa.


She ate a couple nibbles of a sandwich roll, a bite of strawberry, and a few small tastes of my ice cream. I tried to give her some of the whipped cream mixed with strawberries from on top of the cake but she flat out refused to open her mouth for that. :) She also got to have a few tastes of Aunt Kelly's ice cream, which is a pretty big deal since Aunt Kelly NEVER shares her food with the kiddos. :)


We ended up being there for the whole 3 hours of the party and she did great the whole time. Towards the end, she kept filling up cups of water from the dispenser that was just at the right level for a 2 year old who has a fascination with water. I kept taking the cups away and eventually she had a meltdown so we took that as our cue to leave. :)


Even when she's throwing a fit on the floor, she's adorable. I think it's the pigtails. And the fact that there was enough other noise that we couldn't hear her. :)

Her respite provider is out of town this weekend so we took her to church with us for the first time since Christmas. It was the first time since August that she'd been to the full 3 hours of church. We were a little nervous about how she'd do but she really surprised us yet again. She sat all the way through the first 2 hours of church without causing any major disturbances. She played with the toys she had brought, drew on a little notepad, and stuffed Wheat Thins in her mouth. I let her because if I had tried to go all feeding therapy on her and only let her have one bite at a time, she would have screamed. :)
Once the third hour came along, she was done. It was way past naptime and she wanted to crawl under the rows of chairs dragging her backpack behind her. That was the point at which we became a full-blown circus act so we removed ourselves to the hallway for the rest of the hour. She kept saying, "Tan we doe home?" and staring longingly out the window with her backpack dragging along behind her.
But we survived. Our ward split (meaning the boundaries of the group we attend church with changed) in October so most of the people we go to church with now have never met Raya. A couple of people asked me if we'd be taking her to nursery but I told them there are still too many bugs going around. We're still trying to make up lost ground from the sinus infection in January and whatever she had a couple weeks ago, so we're still trying to minimize her exposure. Hopefully soon. :)



Friday, April 13, 2012

Another farewell

Life has been busy the last couple of weeks and I've missed some things so here they are. :)
We had our last visit with our long-time feeding therapist Miss Wendy last week. It was another bittersweet farewell. It makes me sad when we have to say goodbye to people that have been taking care of Raya since we started all this craziness. Raya has been seeing Miss Wendy since June of 2010 when Raya was almost 7 months old. She was with us back when Raya would gag and vomit just from sitting in the high chair or seeing a spoon come towards her face.
I often wondered why we even bothered with feeding therapy for a long time. Raya just plain didn't want to eat. She didn't care if she had anything to do with food, water, formula, or any type of eating utensil, mouth cleaning utensil, or drinking vessel. A lot of our visits consisted mostly of Wendy and I talking about things I could try with Raya and me updating her on Raya's latest vomiting adventures. She always let me unload my worries and frustrations on her and gave me suggestions of what to do, and sometimes just threw her hands up in frustration right along with me. Raya and Kaida love Miss Wendy!
For the past few months we've been seeing 2 feeding therapists. Neither of them had weekly availability so they alternated weeks so that Raya could still get weekly therapy. Last week I got a phone call that our second therapist just had a weekly opening, so it was time to say a bittersweet farewell to Miss Wendy. We had our last visit with her Thursday. Raya decided to send her off the same way she came by having no interest in food that day, so instead of food she just played with the cute magnetic dolls that Wendy brought her. :)
We will miss her but we agree that having the same therapist coming every week will be better for Raya and we appreciate everything Wendy has done for us!


I made an exciting discovery last week. Raya's hair is sort of long enough for pigtails!
There's just something irresistable about a toddler with little wispy pigtails. :) It's taken us WAY too long to get to that point but I'm glad we're finally there. Now if she would just leave them in!
Even her sour cream face is cuter with pigtails. :)

I also made a not-so-exciting discovery this week. More blood coming out of Raya's stoma, puffy scar tissue around the stoma, more goopy discharge, a little bit of redness around the tube off & on, and she tells me sometimes that it hurts when I'm touching the tube. This saga is still unfolding so I'll save it for another day. We're definitely going to be switching to an AMT Mini One button as soon as it can be ordered though, and possibly going to a different size that's a little bit bigger just in case the current tube is too short & causing some of the problems.

Wednesday, April 11, 2012

Thoughts while visiting the hospital

I had a chance to get away this evening and go visit Raya's sweet little friend Lily (who you may remember from this photo shoot we did a couple weeks ago) at the hospital. It's been about 17 months since Raya's last admission and since then, the huge new addition to the hospital was opened. (you know, the one that we had a fabulous view of from our tiny, cramped, double-occupancy room) On the way there, I realized that I can drive there without even thinking about it. The car could probably take me there by itself. 

I've been back there several times for different things (Raya's endoscopies & GJ tube change, awful appointment with the dietitian, etc.) but all of the times I've gone to visit people since Raya's last stay, the people I was visiting were in the new part of the hospital. Tonight, I signed in at the front desk and asked what room Lily was in. The lady told me the number but it was in the hundreds, not in the thousands like all of the new rooms are. I looked at her in confusion and said, "Really?? 3__? In the old tower?" She said, "Yes, it's over in the older part. Do you know how to get there?" I told her I did and she said, "Are you sure? Do you want me to draw you a map?" I said, "No thanks, I know how to get there." Blech. I definitely don't need a map, I know it better than I'd like to.

I walked over to the old tower, passing by the staff elevator, the ugly metal horses on the wall, the ugly horse sculpture, the library, the handprints with kids' names on them, and the surgery waiting room that I've walked by hundreds of times before and got on the elevator that I've ridden in hundreds of times before. A lot of things have changed since they opened the new tower but a lot has stayed the same. (namely the decor and the smells) As I was walking, I thought to myself, Wow, I've basically lived in this place for a total of almost a month. I know a lot of people who have done a lot longer, but that's a lot of time away from home. When the doors opened on the 3rd floor, I walked out and almost gagged. That caught me by surprise. I never thought I'd be bothered by being there. I remember every detail of that floor though. The funky black and silver chairs in the lounge area, the pictures of kids with NG tubes on their faces on the bulletin boards, the teen room that didn't do us any good because it's for teens, the nasty community bathrooms that all the parents had to share because we weren't allowed to use the patient bathrooms, and most of all, the stinking DOUBLE OCCUPANCY rooms with about 6 square feet of living space (if you were lucky enough to be on the side of the room with the window). And I haven't missed ANY of it.

I got there during shift change for the nurses so the day & night nurses were both in Lily's room. The day nurse looked at me and said, "I recognize you. Have you been here before?" Oh dear. I looked at her face, then looked at her name tag and realized that I recognized her too. She was Raya's nurse for 2 days. Given that it's been 17 months since we were there last, I wasn't sure whether to be impressed or scared that she remembered me. :) Hopefully she wasn't remembering me as the emotionally unstable mother from 309B. :) I think she had us on a couple of our better days, lucky for her. Otherwise it definitely wouldn't have been a good thing that she remembered me. :)

I had a nice visit with Lily and her parents. She's "healthy" right now, but they've got some big decisions ahead of them this week and most likely, Lily will be having surgery on Friday to hopefully fix some scary things that have been happening lately. It's a different kind of sad seeing someone else at the hospital with their medically complex/fragile kid. It was sad for me to see Raya like that, but it's totally different walking into a room and seeing another mom going through it and then walking out a little while later knowing that they're not leaving anytime soon. I remember what that felt like. I remember sitting on my plastic couch staring out the window at the cars flying by on the freeway and feeling so strange knowing that the world kept on going even though MY world had come to a screeching halt. I remember having the discussion about going home only to be told hours later that we couldn't. I remember feeling absolutely trapped, claustrophobic, bored, lonely, exhausted, frazzled, discouraged, and suffocated. And cold. It's always freezing in there. :)

It wasn't all negative, thank goodness. Raya was very entertaining when she was feeling good and I recognized that getting to spend that much time alone with her was a rare privilege given that she's the youngest of 4. Most of the hospital staff that we dealt with were pleasant and a lot of good eventually came out of that hospital stay. I also got all the Cran-Grape juice I wanted and the hot chocolate cart came around every afternoon, and occasionally I got special treats like cookies and ice cream. :) The best treat though was walking the heck out of there and not being admitted again for 17 months and counting. I feel guilty sometimes that Raya is doing so well when so many of our friends are struggling so much. I hope that there will come a time when they hit 17 months and counting too.

Tuesday, April 10, 2012

Drowsiness brought to you by Periactin

After a month-long hiatus from Periactin, I started Raya on it again yesterday to see if we could get her eating a little more. It seems like every time we cycle her on it, we discover a new side effect. The first week she took it, she had terrible insomnia. There was also some extra excitability and restlessness. I was slightly disappointed as I had been expecting the traditional drowsiness that accompanies antihistamines. :)
This time around, the insomnia has been replaced by drowsiness. It's much nicer to live with. I feel kind of bad for her, she's gone back and forth between wide awake and not able to keep her eyes open all day long. I took her to OT this morning and within 30 minutes it was lights out for Raya. she slept most of the session while her therapist had her in the swing and then did deep pressure massage on her. She stayed asleep until I was buckling her into her carseat, woke up briefly, slept for a few more minutes, woke up and was WIDE awake for about 5 minutes, and then fell asleep again. When we got home, she laid down on the couch for a few minutes and then finally woke up for real.
As far as the effectiveness of the Periactin, the jury is still out. She's been telling me all day today, "Mommy, humbwee." So I ask her what she wants to eat, give her whatever she asks for, and she doesn't eat it. It does seem to be making her hungry and she's starting to recognize that she's hungry but that doesn't make up for her lack of desire to eat. She's still not making the connection between hunger and eating, nor does she comprehend that eating is necessary to sustain life. I really don't think it's fair for a 2 year old to have to even TRY to comprehend something so abstract and complex. It makes me sad if I think about it too much so I don't. Mostly when her feeding therapist comes over, which happens every Tuesday now.

This afternoon we talked a lot about the need to keep food interesting for her so that she doesn't get distracted. She's very easily distracted and gets visually overstimulated fairly easily. We had a family gathering for Easter and for me, those are always met with mixed feelings. Of course I love getting together with family and I love having the kids have a chance to play with their cousins, but Raya doesn't have the same experience that all the other kids do. She was a little overwhelmed with everything that was going on. There were 12 other kids running around, a lot of adults talking, tile floors & high ceilings echoing, and a lot of things to see. Instead of her normal chatty busy little self, she wanted me to hold her the whole time and didn't say 2 words to anybody the whole time we were there. On the plus side, she wasn't freaking out like she has before when she's been in similar situations. I just felt bad that she was not having the same fun experience that all the other kids were having with each other. It's really strange to see Raya acting subdued and wanting me to hold her when there's fun to be had. That's how you know she's stressed out. She also had no interest in going outside to hunt for Easter eggs when the other kids were looking for them but she did have fun making a little Easter picture with Grandma's pretty stickers.


On the bright side, she took some tastes of the homemade salsa. She really does prefer strong flavors like spicy and salty over sweet things. While I was holding her, she licked 3 or 4 small bites of salsa off of a chip (not the same chip every time, I wasn't double dipping :) so I asked her if she wanted a bowl of salsa and she said yes. I fixed her a little bowl with some salsa and a scoop of sour cream and a couple of chips and sat her at the table with some of the other kids. I fully expected her to eat it and I think she was planning on it but as soon as I put her down, all she could do was stare at everybody else that was at the table.
Oh well, at least she had some tastes before that. :) She also had a couple bites of strawberry shortcake. It just takes her forEVER to finish even the smallest bite of something. She's starting to move the food around in her mouth a lot more which is good, but now she's pocketing a lot of food in her cheeks. For now, her feeding therapist thinks (and I agree) that it's okay to let her do that because it's her way of experiencing her food and she does need to build up an awareness of what it feels like to have food in her whole mouth rather than just on the end of her tongue like she's been doing up until recently. When I actually sit with Raya and make her take small bites that she can manage and only give her access to one bite at a time, she does much better but she loses interest very quickly, gets frustrated that I'm not letting her be in control, and it takes a very, very long time for her to finish any significant amount of food. I'm not the most patient person and I have 3 other kids that need attention too, so those are the things that make all of this feel overwhelming to me. Thank goodness I don't feel that way all the time! :)

Monday, April 9, 2012

Zevex Infinity Interval Setting

Alternate title: How to do bolus feeds (or slow intermittent feeds) with the Zevex EnteraLite Infinity Pump

Alternate title #2: How to make your life easier and get a teensy bit more sleep!

I suppose I should explain why you'd want to use the interval setting. When Raya was younger, we were in a pretty desperate struggle to stop her incessant vomiting. Part of our treatment plan was a very strict feeding schedule. Maybe if Raya had been my only child and I hadn't had ANY other responsibilities but taking care of her, I could have mustered the discipline to get up every time the alarm went off to turn the pump on or off, refill it, etc. but that wasn't the case. I was exhausted and I've never been that good at getting up when my alarm goes off anyway. There were times when she needed to be fed for 3 hours at a time every 4 hours, which meant that I would stay up late to turn on her first feed of the night, wake up 3 hours later to turn it off, wake up an hour later to turn it back on, and repeat. If I'd been able to use the interval setting then, I could have saved myself from having to do that all night long because the pump would have simply paused between feedings and then resumed when it was time for the next feed.

 (note: We had the Kangaroo Joey until she was 7 months old and she couldn't tolerate cold formula until she was older than that so I never did this with the Joey pump. It CAN be done though. For instructions on how to use the Intermittent Feed setting on the Kangaroo Joey pump, click here. Instructions are on pg 13-16 of the manual.)

Thank heavens she's not on that crazy schedule anymore but the interval setting is still a beautiful thing because now we are able to use it to deliver her bolus feeds. A lot of people use syringes to do bolus feeds but that's just something that has never worked for us. With the pump, we're able to give her a 240ml bolus feed in 25 minutes using the maximum feed rate on the pump. I use the interval setting so that when I put her in bed for a nap, I don't have to risk waking her up to start her next feed on schedule because the pump just starts it for me.
This is also a lifesaver when we're out & about because the pump feeds her without me having to drag out syringes, bottles of formula, towels, and try not to make a mess or cause a scene. We went to the zoo this weekend and I knew we'd be there long enough for her to get 2 feeds so I filled up the pump bag, threw in an ice pack, and didn't have to worry about it. It's a great solution for an on-the-go toddler. The pump is also a lot better at delivering the feed at a constant rate than I am. :) The bottom line is that it takes a lot of the human error out of keeping Raya on her feed schedule as long as I've programmed everything correctly and put in enough formula. :)

Without further ado, here's how to use the Feed Interval setting on the Zevex pump.

1. Set the desired feed volume (amount):
Raya's bolus feeds are 240ml, so that's the amount I program in. (she's come a LONG way from the days of 22 hour a day continuous feeds!!)

2. Set the desired feed rate:

Since we use the pump for bolus feeds (large amount in short time) we use the maximum feed rate of 600ml/hour.

3. Push "FEED INT" button and enter in the amount of time between the START of each feed
This can be a little confusing. The amount of time you program into the FEED INT setting is the amount of time you want from the start of one feed to the start of the next. In this case, we used 2 hours and 50 minutes.
This brings me to an important detail. The time on the interval setting goes in hours and minutes. If you want an interval of 3 1/2 hours, you put in 3.30hr, NOT 3.5hr. It's written as a decimal but that's not how it really works. Each .10=10 minutes.

4. Make sure you have enough formula in the
pump bag for all of the feeds and then push "RUN/PAUSE" to start the first feed
Here you can see that 2.5ml has been fed and the "run" indicator is going. Also note that the words "Feed Interval" appear in the corner. If they're not there, then the Feed Interval setting hasn't been activated.
After a full "dose" has been delivered, the pump will stay on but pause for the amount of time programmed. The screen will flash "NEXT DOSE" and then the amount of time remaining until the start of the next feed. The pump will keep cycling until the bag is empty.
In this case, after the first dose finished, there was 2 hours and 25 minutes left until the start of the next dose which means it took 25 minutes for the first dose to run. Make sense??

Okay, hopefully that made sense but I'll give a couple more examples just in case. (As a side note, when I was sitting in my 3rd grade classroom struggling to get a grasp on how to do story problems, I hadn't the slightest inkling that I might someday actually be USING that knowledge to figure out how to get a machine to deliver accurate dosages of special formula to my child! Life's funny, isn't it? :)

Example 1: When Raya was younger, we did slow feeds of 180ml delivered at a rate of 60ml/hour every 4 hours. To program this into the pump, you would enter the dose as 180ml, the rate as 60ml/hour, and then the feed interval would be 4.00hr. The pump would run until the 180ml had been delivered, pause for 1 hour, and then start the next feed.

Example 2: A couple weeks ago Raya had a fever of 104.3 and I didn't dare give her formula because I didn't want to make her vomit. I also didn't want her to get dehydrated though, so I put about 500ml of Pedialyte into the pump bag and programmed the pump to give her doses of 100ml at a rate of 50ml/hour with a 30 minute break in between. Since the dose took 2 hours to deliver and I wanted a 30 minute break in between doses, I set the interval to 2.30 (2 1/2 hours).

I hope someone finds this useful! :)

*Note: In 2013, MOOG released a statement cautioning against using the Interval setting or the INF DOSE setting for any individuals who are sensitive to volume. The statement reported that there is a risk that the pump may continue to run and could pump air into the stomach or intestine when using those settings. That being said, as long as we have removed ALL air from the pump bag prior to starting the pump, we have never had a problem with air running into Raya's stomach. If there is no air in the bag, there's no air available to be pumped into her stomach even if the pump does continue to run.
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