Tuesday, April 27, 2010

Feeding Clinic Day #1

Today we started our first feeding clinic at Mt. Washington Pediatric Hospital's outpatient feeding therapy program. We intentionally skipped the boys morning bolus feeding at 7am so they would be extremely hungry when it was time to eat for the evaluation. We had to be there by 8am and once we muddled our way through down town inner harbor traffic and a couple of wrong turns we were just 15min late. When we arrived we had to sign in and wait for someone to escort us to the clinic to start the admissions process.

While signing in we met another dad, we'll call him "David" who's two year old son we'll call "O" has been in the program for only two weeks. David said that in those two weeks O went from eating nothing to starting to eat several things and that he really was happy that it started happening so early in the six week program that it was worth the one hour one way commute from Bethesda to drop him off before heading to work. David could not say enough nice things about the program and the staff. This is very encouraging because I have been struggling recently with hearing the feedback from many parents across the country who've had children go through similar programs, and in particular one person who I met online who's daughter went through the same program this past fall with little to no success.

Once we were in the actual clinic we had to fill out a bunch of admission papers and then have the medical staff take the boys baseline vitals. This is always a traumatic experience, and today they really let us have it. Any time you have to disrobe the boys, or even if they see the doctor's bench with the paper across it they instantly become upset and start crying and screaming and trying to get away. All we need to do is weigh them without clothes wearing a dry diaper, take their height, look in their ears, and the worst is take their temperature.

* As a side note I must rave about the thermometer that the nurses use here. This thing takes an accurate temperature reading in under 8 seconds! And since it's an temporal arterial thermometer the boys can fight all they want but all you need to do is swipe it across the forehead, down the temple, behind the ear to under the earlobe and VOILA! Temperature is taken! And the thing is pretty cheap, about $35, if you have issues with getting a kid's temperature like I do. Here's the product:

We met with the Director of the program Dr. Katz who is the GI specialist, the program manager, a psychologists, a behaviorist, the GI nurse practitioner, the dietitian, two OT therapists who will be primarily feeding the boys, a speech therapist, and the head nurse in charge of taking vitals and administering feeding pump sessions.

Once the boys were admitted and calmed down, Drew and I took the boys to a feeding room where there was a one way mirror and a video camera set up. The feeding therapy session was recorded so that we can use it for review and comparison throughout the program. Pretty much they ate nothing, worse than usual in fact. Cameron, quick as a bunny, managed to stuff one whole entire Ritz cracker in his mouth and get it stuck behind his top teeth so that I had to go in and pull it out. Evan played with his food too and drank his milk. But for the most part nothing measurable aside from milk was eaten and all of it ended up on the floor and the wall. I dropped the boys off in the playroom with the 8 other kids in the program who were working on an arts and crafts project (making Diego pinwheels) and they didn't even care that I left them in a room full of strange adults and kids. I have no idea if they were even upset that both had a dirty diaper and that a stranger (one of the playroom nurse technicians) changed their diapers for me while Drew and I were meeting with the director. I never heard a peep from them and I was just across the hallway listening for their cries. That they had a great time in the playroom made the day successful. Cameron was so tired that when we went to peak in on the boys to see how they were doing before actually collecting them to go, we found half the kids sleeping in cots, half playing quietly or watching Diego. Evan was in the arms of a technician watching TV while Cameron was in the middle of the room on the floor laying on his belly sound asleep snoring away.

After our baseline evaluation of their vitals and feeding demonstration and being asked about 10,000 questions by all 10 feeding team members about eating, lifestyle, behaviors, our concerns, our expectations for the program, and different therapies we've tried we were presented with a written list of long term goals for the next six weeks:

1. Increase solid food intake to an average of one ounce puree/soft solids per meal.
2. increase liquid intake by 50% over 2 day baseline.
3. demonstrate appropriate self-feeding skills with utensils 10x per meal.
4. demonstrate an average weight gain of 5 to 10 grams per day.
5. present with 80% appropriate mealtime behaviors (that means that 80% of the time that the child touches a food they have an appropriate and favorable response to food which includes licking, sucking, touching with hands or lips, etc.)
6. Caregivers to be trained on feeding protocol and be able to implement the protocol independently.
7. (This applies to Evan only because he does not put food in his mouth and tolerate it at all, unlike Cameron who is now willing to put solids in his mouth) Evan will demonstrate emerging lateral processing skills with meltable solids, 10x per meal.

The short term objectives for our first week are:

1. Therapist-fed baseline to be completed.
2. Parent-fed baseline to be completed.
3. Feeding protocol to be developed.

Each week we will have a family / feeding team meeting to review the weeks goals and achievements for each boy separately, and determine the next weeks short term objectives.

Tomorrow we begin with our standard daily schedule which is

8:15am Nursing check in
9am Feeding Treatment
10am Group Play Therapy (usually involves motor skills)
11:30am Feeding Treatment
12pm Nap or Structured Play (they will have cots assigned to them)
2pm Playroom activity
3pm Feeding Treatment (snack)
4pm Day Program Closed / Go Home

Tomorrow we will be feeding the boys breakfast and lunch, and then the therapists will feed them their afternoon snack. Then we will feed them dinner at home. Each and every time we feed the boys we are supposed to try (within reason) to measure each food item they are offered before they eat it, and then any remainder that is left over remeasure so we know down to the ounces and grams how much they have consumed. This will eventually allow us to cut back on the volume of formula they get through their feeding tube. The program even provided us with a scale for measuring and a chart to write it all down and turn in on a daily basis. Each day I will be sitting behind one way mirrors observing as the therapists work with the boys on positive reinforcement to eat on a one on one basis in separate rooms. And each day I will go home hopefully with some new tactics to keep them eating. The last week of the program each caregiver in the family, including our OT therapist from Early Intervention (EI) who has been working with us for the last year, must attend a session or week of sessions (depending on how involved they are with the boys eating) to be trained on all the techniques that work for them.

The one thing that is interesting about the days meetings was that EVERYONE we met was shocked that both boys have been struggling with these conditions identically. And it is an agreed toss up as to how much of what is going on now is medical (severe reflux) and behavioral and the unavoidable co-dependency of their sibling's issues and behaviors feeding off of one another. Either way, all the therapists and doctors we met with today all seemed very positive and up beat about the upcoming six weeks.

I will try to post every day, as the day progresses so I can share with those of you out there who are searching for experiences with feeding therapy and feeding clinics and experiences with Mt. Washington Hospital and their Feeding Day Program. The hospital has a Wifi system and I should be able to get on and post pretty frequently. I will most likely not be able to post images or videos because of HIPPA rules and regulations, and I will happily honor that, but if it's possible I will try to share what I can.

Thank you so much to all our friends who have been sending us all their thoughts and prayers and words of encouragement. It means so much to me that you are all supporting us through this process.


B said...

Great post. I'm looking forward to seeing how C & E take to their therapy over the next six weeks. Keep up the good work Mama!

David, Trish and Robbie Cox said...

Thanks so much for sharing all of this. I'm watching with rapt attention! I'm very hopeful for you guys!

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