Thursday, February 28, 2008

Pediatric Gastroenterology and Physical Therapy

Well, we saw the Pediatric Gastroenterologist today. He seems nice enough, but he sort of rubbed me the wrong way. Brett says it was all me, he's totally fine. I'm inclined to believe him because I've been off of my rocker lately. Dr. H ordered a swallow study to rule out any swallowing complications as being the culprit to Maryam's lack of interest in eating. I say lack of interest, but to say that would imply some interest, when in fact there is absolutely NO interest what so ever! He also said that "her doctors need to be more aggressive with getting her help with her feeding issues." Um, REALLY? NO WAY! When I told him that her feeding issues and getting her more help for said issues were our reason for the visit he offered no further assistance. He just said she needs more help. When I asked about feeding clinics he said he doesn't know of any. OK, that's when I nearly lost it. He said he would consult a colleague. I'm still less than impressed.
I asked about Maryam's reflux meds because her surgeon says she shouldn't need them anymore since she had the fundo to stop her from refluxing. Dr. H didn't want to stop them both, he said one at a time. He stopped one of the meds and hopefully next month he'll stop the other one.
I asked about Maryam's caloric intake because her pulmonologist wanted us to find out what Maryam's RDA should be. Dr. H suggested we bump her up from 800 cals/day to 1000 cals/day. He suggested the bump because that is the RDA for her age. OK, if she was moving around like a "normal" baby her age, then sure, bumping up the calories makes sense. HOWEVER, Maryam is less than mobile. There is just no way she can work off all of those calories. As it is, she gained a pound in 3 days! I'm going to send her neonatologist an email tomorrow asking for a second opinion on the calorie issue.
What really bothered me about Dr. H. is he kept talking about how he hadn't seen a baby this old on Oxygen since Surfactant had been invented. He understands that being on the Oscillator for so long does that. (6 freakin' weeks, hello!) OK, do I really need to know this? I just felt like Maryam was being judged, so consequently I felt like I was being judged. But like I said above, I've been off of my rocker lately.
Physical Therapy today was good. Still working on getting Maryam to put weight on her left shoulder. She'll do anything to keep all her weight on her right shoulder, including falling over, falling backward, falling on her face, and being completely and totally uncomfortable. Its strangely amusing. But I'm not going to go into how disappointed I am with the rehab facility. I'll save that for another day, when I haven't previously gone on and on about something else!
I do have a FUNNY story about Maryam! Brett and I gave her a bath tonight to try to get her to go nonny. After her bath, which she enjoyed tremendously, I tried putting her jammies on her. Every time I put her shirt on, she took it off! This is the first time she had ever done this. It was super cute and totally amusing to all of us involved.


Emily said...

*hugs* I'd be a bit upset after an appointment like that myself. I remember seeing our GI for the first time when Dakota was 14mos and he looked at me and goes after talking about her having the tube etc, "well why doesn't she eat by mouth?" I wanted to slap him and explain that it's not quite as easy as presenting food and having the child eat it. I don't think GI's fully grasp what our little ones with swallowing issues and oral aversion go through and just why they have absolutely no interest in eating. And ours has still to this day yet to understand why Dakota's is still needing oxygen at 2yrs old luckily, that's not his area so I cut him some slack.

Feeding therapy is so so so tricky. I think it's very individual. For a long time we were really persistent and really pushed Dakota to eat but in the end it did a lot more harm then good. We'd have "feeding sessions" multiple times a day with everyone getting frustrated and her eating nothing. It was a nightmare. We had an SLP who came to the house twice a week to work with Dakota for 9mos and in the end we were worse off after that than we were before. Pushing for us was the exact opposite of what Dakota needed.

Then, we switched to a new SLP with extensive feeding experience with SN kids. I swear after the first eval (I have it typed up in the blog somewhere under the tag "feeding therapy") I felt like I knew 100x more about Dakota than I ever had learned via our old therapist. This therapist took a totally different approach, no pushing whatsoever. She started with the first several months just forming a bond with Dakota and getting Dakota to trust her and then from there moved on to oral motor exercises, different oral stimulations (cold, hot, etc) and then from there tastes of food. It was amazing to see Dakota transform in front of us and on her own begin to desire to eat. That's when goldfish, crackers, etc came into the picture and she LOVES them now. But purees are something we're just starting out on and she still drinks little liquids by mouth.

For Dakota the behavioral approach of basically forcing her to eat and not letting her refuse, has not worked. She feels threatened and needs to feel in control, especially since eating is terrifying for her because she can't eat and breathe properly at the same time.

Just be encouraged that there is hope. I never thought the whole eating thing would take this long. I look at where we were 1yr ago and where we are today and it seems like we've made such little progress but in fact we've set up a good eating foundation and we're making teeny tiny baby steps. I honestly see us having the tube until around 5yrs old even just because Dakota needs such astronomical calories to grow (the normal calculation for babies over 1yr is 100kcal/kg/day give or take 20% depending on their activity level and metabolism. Dakota even though she's only 8.4kg and should need at most 840 calories, is taking 1300 calories per day and still not growing at an acceptable rate).

You're not alone. Have you looked into any private feeding therapy instead of ECI?

Sarah said...

You're not off your rocker. I feel that way a lot, but the fact is we all have an awful lot on our plates and sometimes doctors just don't seem to get it. They do their job and go home. They don't live with our kiddos.

And, for what it's worth, send that doc our way. Emery had 16 doses of surfactant (no, that isn't a typo) and he'll be on O2 for 2-1/2 years. Our hospital just lets the kids grow out of it rather than wean, so he can judge us more than you lol!

Just remember, you are doing the best you can, and don't beat yourself up if it isn't what you think is perfect.

Anonymous said...

Well, she certainly has a mind of her own, like someone else I know, including myself. What a cute video. You are going to find, that doctors contradict themselves a lot. I guess we just have to use our own common sense. Just remember you know Maryam better than anyone. Can't say I would do such as good a job as you. Hang in there! Love, Marietta Oh, just realized that you answer me on the blog. Slow learner! Have a good week-end!