Yesterday was the big day–the consultation with the Feeding Team at the GI Clinic at Children’s Hospital of Wisconsin (CHOW).
We left the house a little later than anticipated and hit more traffic than expect, so we very nearly missed the appointment. The clinic allows you to be no more than 20 minutes late. When I called from the road to let them know where we were, the nurse basically told me it was hopeless and suggested that we reschedule right then. I tried hard not to scream or cry. I said, I’ts 9:20, I have until 9:50 right? Okay then, let’s reschedule if I walk in after that. Well, we pulled into the construction site that is CHOW and Philippe dropped us off. I grabbed Charlotte and ran through two buildings, diaper bag flapping. At precisely 9:45, we walked into the clinic and said “We’re here!” Laura, Charlotte’s regular feeding therapist, joined us she’d been sitting there for 20 minutes or so.
If you know me, you know I hate to be late. This was a nerve-wracking start to our day. Charlotte, however, did enjoy the jog. She giggled the whole way.
So.. they got us settled in a room equipped with a high chair and a Tripp Trapp chair (what we use at home). Philippe made it in 10 minutes later–so if we’d all parked and walked, we would’ve been late! We were joined by Dr. Long, a behavioral psychologist, Midge Kirby, a nutritionist, Trina Gonzalez, an RN, and Dr. Joan Arvedson, the speech pathologist who literally wrote the book on infant eating challenges and swallow studies.
We spent at least a half an hour talking about Charlotte and discussing our goals. We decided that our primary goals were to get rid of the last feed, stop thickening her formula, and eventually get rid of the tube. Our team let us know that getting rid of the tube is not a practical goal at this time, so we decided to focus at the other two goals.
Then everyone except Philippe, Dr.Arvedson and I went into another room. While I fed Charlotte, they watched from behind a one-way mirror while ourlittle munchkin pulled most of her regular tricks. She took the bottle for a while, needed a toy to keep her hands busy while she sucked, took the bottle and then spit it back out, threw her toys, and refused solid food altogether. All the while giggling.
From the first hour, the main take away was to keep it positive. They suggested that we attempt oral feeding for only 15-20 minutes. If she’s not eating, we’re to start the tube feed then. If she’s eating, we can continue for a little while more. High chair time is not supposed to last for more than 30 minutes.
From there we (Charlotte, me, Philippe, and Laura) went down to an exam room where we met Dr. Ellen Blank, a GI doc. She asked a million more questions. Laura kept us honest and reminded us of some of the questions we wanted to ask.
Mainly, our concern is that when Charlotte vomits several hours after a feed, she’s still has a significant volume to expel. We’re also concerned about her chronic congestion. Of course, we’re concerned about the vomiting in general, but…
Dr. Blank and the rest of the team think that one of the reasons Charlotte isn’t getting hungry and can vomit so much is that we’re feeding her a very fat-heavy formula. Changing the formula and the number of calories per baby kilo that we feed her daily might help increase her appetite. Dr. Blank drove home the idea that Charlotte could have the G-tube for a very long time. She counseled that since Charlotte has a heart condition which causes her to work harder and burn more calories eating than regular kids. Given her need for further surgeries and the potential feeding setbacks surgery could represent, she explained, we canÂt have getting rid of the G-tube as a goal.
From Dr. Blank, Phil and I took a lunch break and Laura headed back to Chicago to work her own clinic.
Dr. Blank sent us to Radiology for a lateral neck x-ray to rule out adenoid problems as a cause for congestion. Charlotte did not like this at all–she was on her back on a table, with her head strapped into some cushions. Poor baby was hungry (we had to make her wait for the swallow study) and tired and she just lost it. Philippe and I were cringing the whole time. As usual, the only way I could deal with it was to take a picture.
Then we met again with Dr.Arvedson, this time to have Charlotte do a video swallow study. If you recall, we had a bad study back in February: Charlotte was overtired and screaming and she aspirated. Dr. Arvedson stated immediately that she didn’t think the last swallow study was valid. That made me feel really good, because that’s what I thought, too.
Once again, Charlotte cooperated pretty well. We got about 2 good minutes of tape of her eating both thin and thick liquid. Dr. Arvedson declared Charlotte safe for thin liquids. She saw no more aspiration than any other person might occasionally have.
Before we left, they gave us an outline of a plan of action. We’ll get dictated notes and a full plan early next week. We’ll probably go back for follow up in a month or two.
So, what’s the plan?
We’ll transition to Pediasure starting immediately, with the hope of getting her to 100% Pediasure before we leave for Belgium (4/29). The good news is that Pediasure should be covered by insurance and available through our home health care service. Otherwise, it’s slightly more expensive than the special formula she’s been getting
We have stopped thickening her feeds. This allows Charlotte to get one swallow per suck, increasing her efficiency and hopefully allowing her to burn fewer calories
We’re on a new feeding schedule. Rather than 2 bedtime feeds (typically at 7:30 and 10:30 p.m.), I’m trying to feed her at about 7 a.m., 10 a.m., 2 p.m., and 5 p.m. and then supplementing once while she sleeps. This is tough as she naps from 9-11 a.m. and 2-4 p.m. Today I opted to make the 2 p.m. feed a tube feed during her nap. That worked quite well, so we’ll keep that up for a while. The 10 a.m. feed happened just after 11 a.m. today. We’ll just feed her whenever she gets up from that nap.
Charlotte had about 30 minutes nap in the morning and the afternoon yesterday, both times in the car. Despite no naps, she was an absolute angel all day, cooperative and sweet. She’s a bit sleepy today, but I’m amazed at how she just takes all this medical stuff in stride.
Just another fun day!