Skip to main content

Wastin' time

We had an appointment yesterday that reminded me of how lucky we have been with the medical professionals that we deal with on an ongoing basis. Now that Raya has been taking in a good amount of calories orally, and after hearing all of what was said at the POPSICLE Pediatric Feeding Disturbances Conference I went to last weekend, I had decided that I needed to take Raya to see a dietitian so that we can make sure we're maximizing the benefits she's getting nutritionally from what she's eating. I had high hopes for this appointment and felt like it was going to be really helpful for me. Not at ALL how it ended up being.

For starters, at every GI appointment we've ever had, they weigh Raya with no clothes on. For obvious reasons, this makes sense when you're dealing with a GI patient. Consistency in measurement techniques is very important when the whole focus of treatment is to monitor how well the patient's body is responding to what is going into it. This appointment was at the main hospital though, not at the outpatient clinic she is usually seen at. Instead of taking everything off and sitting her on the baby scale like we always do, they had me take off her shoes and weighed her fully clothed with a wet diaper on a standing scale. They took us into an exam room and a few minutes later the nurse practitioner and dietitian came in. (side note, I'm pretty sure that having the NP there is how they get insurance to pay for a dietitian consult) She asked me when we see the GI doctor again and when I told her we go in on Tuesday for a weight check, she said, "Oh, you won't need that, she's up to 29 pounds. She's gained 2 pounds since your appointment in December." (fully clothed with a wet diaper, remember?)

{Let me preface this by saying that the reason I wanted to see the dietitian is so that I could get specific guidance on what we should be letting Raya eat and what her specific nutritional needs are so that I can make up for what she is missing in the part of her diet that she is taking in orally. That's all I wanted.}

The NP remembered Raya from one of her hospital stays and commented on how great she looks. When people say that, I know they mean it as a compliment but when it comes from certain people (i.e. medical professionals) those words make me feel the need to tell them WHY she's looking so good and that it's because of 2 years of very hard work by a LOT of people and not because she doesn't really have anything wrong with her. After we had talked for about 2 minutes, the NP said that her part was done & that she'd leave us to talk to the dietitian.

It started out okay but as I was telling her what our feed/med/fluid schedule is like, I could feel things going south. I gave her a list that I had typed out of the 23 foods Raya has eaten (meaning, taken more than one bite of at least once) so far in January, and told her that on days when she doesn't meet her whole oral intake goal for the day, I make up for it with blenderized food through the tube. {Her doctor and I agreed on a goal of 300-350 calories a day from food, and at least 180 calories orally, by the way.} When I had finished telling her about everything Raya's diet consists of, she asked me a couple of questions (like how much water Raya gets in addition to her tube feeds) and then started telling me her opinions of what we should & shouldn't be doing.

First, she told me that she sees no point in putting blenderized food in the tube. She said that she realizes a lot of people do it and that "there's a whole group in Tucson doing it" (referring to Marsha Dunn-Klein, whose presentation at the POPSICLE conference was probably the one that I got the most out of) but that "that's not what feeding tubes are meant for". She said, "I'm not going to tell you not to do it because a lot of people do it and it makes them feel like better parents, but I don't like it." She told me that she's "probably long in the tooth about it" because she had worked with kids with feeding probems in the UK for about 20 years and she's been working here for almost 10, and she just doesn't see any benefit from it from a nutritional standpoint because the formula is perfectly balanced nutritionally and trying to achieve that same balance using real food just doesn't work. {hmmm...it works for ME...}

This was the point when I consciously had to tell myself to keep listening to her because all I really wanted to do was leave. I hadn't walked in there asking permission to do blenderized diet. I don't even WANT to do a 100% blenderized diet! Raya has grown so well on Peptamen Jr. and her digestive tract tolerates it so well that it makes no sense to change it, especially given her history of having difficulty coping with changes to her diet. Not only that, but the reason I've given her blenderized food at all is because it was something that the GI doctor and I had discussed and it gave us a way to expose her to some of the foods she wasn't eating to see if she was going to have any allergies to them. Her body has seemed to like the food that we've given her through the tube. And of course I was caught off guard by her feelings towards BD, so I probably babbled like an idiot through my explanation of why I've been doing it. What are you supposed to say when the "professional" is telling you you're doing something wrong?!?

Once that part of the conversation was over, the next thing she told me is that I'm not giving Raya enough fluids and that her daily calorie goal (which was set by her GI doctor) is a little low. She did agree, however that since Raya is obviously growing at a very good rate (remember, they weighed her fully clothed with a wet diaper) and Raya's GI doctor is satisfied with a 900 calorie per day goal, she would leave it as is even though most kids her age are at 1000-1050 calories per day. To be honest, at that point I wouldn't have listened to her even if she did tell me to increase it because I know that 900 calories a day is working for us. She then told me that I'm really low on giving Raya additional fluids and that if she were in the hospital right now, they would be making sure she had a total of at least 1150ml of fluids going in. I will admit to that. I don't know why but it's hard for me to remember to give her all of the extra water she's supposed to get. I have been conscious of that though and have given her a lot more lately but I rarely ever write down how much I give her, and we've been letting her drink water when she wants to so it's really not possible to know exactly how much she's getting. I don't think we're quite as low as she said we are but I'm going to do better about that.

After she had asked me all the questions she had, the real fun started. She said to me, "Based on Raya's overall food intake and her weight-for-height percentage (which according to their inaccurate weight measurement was between the 75th & 90th percentiles), we feel like Raya is an excellent candidate for our intensive feeding and swallowing therapy clinic." The words "Intensive Feeding Therapy" gave me anxiety as soon as I heard them.

(For comparison's sake, imagine if you had an 18 month old that you felt would be ready to potty train at some point in time, maybe even in the next few months, but then someone tells you that rather than wait for cues from the child that he/she is ready to be potty trained, you need to enroll them right now into this intensive potty training clinic even though you don't feel like your child is ready. Do you have anxiety now?)

She explained a little about how it works. They have one GI doctor that oversees the clinic, and if we do it, we will bring Raya in to be evaluated by the GI doctor, an SLP (feeding therapist), an OT, and a dietitian (either the one we saw or her partner). If they decide that she's a good candidate, then we would bring her to PCH for intensive feeding therapy 5 days a week for 4 weeks. (we live about 25 miles from PCH, by the way) She was doing all the talking and I was trying to listen, but I was also trying to keep my eyes from filling with tears. I just wanted to tell her "WE JUST GOT HER TO START LIKING FOOD, WE ARE NOT THERE YET!" but she wouldn't have listened to me anyway. If she had, I might have told her that for 18 months, all it took was Raya thinking that you were going to try and feed her or put something in her mouth for her to gag and vomit. I might have told her how Raya has serious trust issues with me because of all the times I have had to do unpleasant things to her because they were for her own good. I might have told her that we are finally starting to heal some of the emotional trauma that Raya has been through as a result of all of the things she's been subjected to so far in her little life, and that I don't think she's had enough time to make peace with food yet to start something "intensive". WE are not ready yet.

This is where the people at POPSICLE Center have the right idea. Their mission is to bring medical professionals together to form a collaborative team who treat a child AS A TEAM. I don't mean to paint this dietitian as being bad at her job because if she has been working in this field for almost 30 years, then she obviously knows what she is doing. The problem here was that she does not know my child or her medical history, and she does not know me. How can I or anyone expect her to be on the same page as me (or even in the same book, apparently :) when she has NO idea what the journey to eating has been like for Raya and didn't seem to be interested in letting me explain?
The fact that she brought up the intensive feeding clinic was not the part that bothered me. I've actually been thinking lately about what to do with Raya when the time IS right for that. What bothered me was that she spent most of the visit telling me why Raya needs to be enrolled in the program. She didn't ask me if I had any questions about the program or what their approach is to feeding, what my role would be in it, what motivators they use, etc., and she didn't ask me what questions I had that had brought me to see her in the first place. She didn't seem at all interested in HELPING me with what I came there for, she just seemed to want to enroll my kid in her program so they could fix her for me. Like I said, that was probably not her intention, but that's the way it came across and there's something wrong with that.

Right before we left, I did finally get her to clarify for me why Raya can't go below 600ml per day of formula. The way she explained it was that a typical 2 year old would still be drinking 2-3 cups (408-720ml) of milk per day. For Raya, the formula is her "milk". (This is the part where I really felt like an idiot.) She asked me if what I was wanting to know was what her "meals" should be like, and she said, "Well, for a toddler they might have a piece of toast with jam or some cereal and milk for breakfast, a peanut butter & jelly sandwich and some kind of fruit and yogurt for lunch, and for dinner some kind of protein like meat or chicken with some pasta or rice and a vegetable. Do you need a poster with portion sizes on it? Let me go get that for you."

So now this woman not only thinks that I'm needlessly hanging on to my daughter's feeding tube, but she also thinks that I don't know what a typical toddler would be eating. 1. Raya is not a typical toddler when it comes to food, and 2. SHE'S MY 4th KID, NOT MY FIRST. My other 3 kids, albeit skinny, are healthy and eat a pretty well-balanced diet, so it's not that I'm THAT dumb and don't know what she would be eating if she ate like a normal kid. The problem is that I don't know what to do to compensate for the fact that the ONLY things she DOES eat right now are protein from dairy products and peanut butter and empty calories from junky carbohydrates and has very little variety in her oral intake.

After she brought me the poster about a normal toddler's diet and portion sizes, she told me that I need to start trying harder to get Raya to drink formula so we could cut back on her tube feeds that way. Peptamen Jr isn't awful tasting, but she said that Pediasure Peptide tastes better, so she gave us some samples of strawberry & vanilla flavored Pediasure Peptide to try. She told me they would put in the referral for the feeding clinic (since she didn't give me a chance to tell her that we're not ready for that yet) and said they'd call us to schedule that, and that I can ask Raya's GI doctor to switch her to Pediasure Peptide if Raya drinks it better than the Peptamen Jr.

Finally, we were done and I couldn't get out of there fast enough. To say that it was a frustrating appointment would be an understatement. I should have just trusted my instincts and figured things out on my own. It wasn't a total loss and she is right about the fact that I don't give Raya enough water and we do need to work harder at getting her to drink formula. {In the interest of full disclosure, I did give Raya 2 oz of the strawberry Pediasure Peptide this morning and she drank it out of her favorite ketchup squeeze bottle (the red kind with the pointy lid that you can refill. yep, that's her bottle/cup of choice) but then when she asked for more and I gave her 2 more oz, she just made a mess with it and sprayed it everywhere.} HOWEVER, I really didn't need to reschedule my whole day (because of the short notice of the appointment), drive all the way to PCH, and sit through that miserable appointment to figure those 2 things out. On a lighter note though, we got to see a little bit more of the new part of the hospital and it is absolutely gorgeous!

Comments

  1. I am SO sorry Brandis. I totally get this. On Thursday I went to a new PCP office. I ended up leaving in tears. This new cocky doctor wanted to give me a new diagnosis and all I wanted was a referral and a new PCP to have on my list. I know what I have and I know that my EE is getting worse and that is what is going on. Instead he got rude with me, wants to read my old reports and is questioning what my current drs are doing for me. He doesn't even know anything about EE or what it does. I should have just gotten up and left and I have promised myself that next time I will. Its so hard and I can only imagine how much harder it is when they are talking about your child. I am sorry. ((hugs))

    ReplyDelete
  2. Hats off to you! Way to trust yourself & be an advocate for Raya. Look how strong you are.

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …