Friday, September 4, 2009

Steps 1-4 But Not In Any Particular Order

Anna's GI appointment was today and I guess it went OK. I don't really know what I was expecting to happen and I left in tears and angry at the doctor for not being able to fix things right then. That was an unreasonable expectation, I know, but I just want this to be over. My therapist tells me that there is usually some feeling behind anger, that it does not usually occur by itself. My hidden (or so I chose to think it is hidden) emotion is exhaustion. We had those few brief weeks that Anna slept but she is back to getting up every 2-3 hours again and I am growing weary. Enough about me- back to the appointment. By their scale she was down about what I thought she was. Dr O. (Ogunmola- but I refuse to type that over and over) said that there is a 4 step process to "fix" this problem. I think my frustration stems from the fact that the process can be long and my patience is wearing thin. Step 1 is to get the EGD and pH probe done. He moved it up to the 10th so we will be doing that next week. After the EGD they will put the pH probe down her nose into her stomach and leave it for 24 hours. It will come out of her nose and run behind her ear to some little box that will make the recordings of the acidity. It should be great fun to keep her from pulling it out. Then we go back the next morning to have it removed. If there is indeed reflux which I am sure there is then she will be restarted on Prevacid. Step 2 is to start an appetite stimulant. He says he usually waits until after the EGD to start it but went ahead and started it today and is taking the "plan" out of order given Anna's worsening failure to thrive. She will be getting Periactin 2X a day to try to get her to eat. He said it might make her sleepy. I got a good chuckle and said that since in takes 50mg of Trazadone to get her to sleep and she still wakes every 2-3 hours that I doubt the side effect will affect Anna. Step 3 is to start Anna at a feeding clinic/feeding therapy program at Our Children's House of Baylor in Grapevine. The crappy part about it is that it takes 2-3 months to get in and it is about 90 miles one way from our house. I hope the insurance will pay their part but it will still leave us with a lot out of pocket that we don't really have to spend. Step 4 is to insert a Gtube if things do not improve. We discussed going ahead and placing an NG tube and starting feeds that way but he is afraid she will shut down completely and quit taking anything by mouth. We also are switching her milk, AGAIN. We are supposed to use Bright Beginnings Soy but I cannot find it here so I think we are going to stick with Soy Silk and add regular soy formula until we get the calorie content to 30 calories/ounce. That was the point of the Bright Beginnings was to up the calories/ounce so I'll just improvise, I am getting good at that. Thank you so much to all of you who called to check on us today. You never cease to amaze me. On a happy note, Carly finished her first week of Kindergarten his week and she handled it amazingly well. She is not a fan of getting up early but otherwise did great. She is glad I pack her lunch because, "Mom, in the cafeteria they make you eat off of A TRAY!!" Perhaps she is a bit spoiled, eh? She has also started back to ballet and is playing soccer also. She is doing great at both and I am so proud of her. She really sacrifices a lot for Anna and rarely complains about it. God knew what he was doing when he made the two of them sisters. Here she is playing goalie...


  1. I know exactly how stressful it is when you have a baby that hates to eat. I'm so sorry it hasn't gotten any better for Anna. Katie is on Prevacid even though she really doesn't show any symptoms (other than not eating when she's weaned off). She hasn't gone for any tests...mainly because I pushed for it and wanted to avoid them. As I'm sure you'd prefer as well.

    Maybe you've already tried this, but have you added Duocal or another version to her diet? It's a calorie booster. I have been adding 75 calories of Duocal to Banana Cream Pudding (the only thing she'll eat that hides the powder) for 2 months and she has put on a little bit of weight. If you haven't yet tried them would like more info, just email me.

  2. I'm sorry poor little Anna has to go through all this.. sending many prayers to you all! (((HUGS)))