Tuesday, December 15, 2009


Maddie had her appt with Dr. Gregory on Friday. I was all nerves walking in there. As Usual, George was calm. They were running behind and it was going to be a 45 minute wait. This was nothing new. In my vast experience with appointments (I've become somewhat of an expert and could write a book on how to stay entertained while keeping your kid happy in a waiting room), I should've known better and should've called ahead of time to see if the Dr was on schedule. We sat there gathering our thoughts on the dreaded feeding tube. There was just nothing I could think of that the Dr could say to change my mind... I'm against it; George is against it. Maddie has taken steps forward with her feeding. She no longer gags on puffs and will eat a few bites of rice, beans, shredded chicken... things that a month ago she'd gag and puke at merely the sight of. She eats 4-5 meals a day of purees and yogurt, and is at least consuming enough liquids to stay hydrated. So what could the Dr of possibly 'found' in this research?... NOTHING! The tube was mentioned  as a plan B in his notes. The Dr. agreed wholeheartedly that the nurse should've gathered more info about our situation. He's going to talk to her about it. He said she's a 'passionate' person, but has good intentions. I have a few other words I'd like to call her. Dr. Gregory was impressed with Maddie's weight gain... she's back on the charts. She's worked her way up to the 10th percentile and is in the 50th percentile for the length to weight measurement. These are good signs! (sigh of relief.. followed by a big WOOHOO!) He also noted how much better Maddie's trunk control has gotten and he saw improvement in the fine motor area as well. Anyways, Maddie was sitting on the exam table and was tired of being poked and prodded, so what does my beautiful little baby do? She reaches her arms out to me and says "mom...mom...MOM" It was clear as day! The Dr. looked at me with a dumbfounded amazement. I grabbed my little one so fast and hugged on her! I didn't realize just how sweet a simple three letter word could sound. Of course, the whole way home George was in the drivers seat saying "Dada Dad Dada" OVER AND OVER AND OVER again Haha!!

Thursday, December 10, 2009

The Nerve of That Nurse!

I called Maddie's GI doctor yesterday to re-fill her Prevacid prescription. (I only had enough left for this morning). They passed me through to the nurse who looked up Maddie's file and this is how the conversation went: Nurse: "Ummm, I don't think the Dr.'s going to do that", Me: "Why not?" Nurse: "He wants to do enteral feedings" Me: "Huh? What do you mean enteral feedings?" Nurse: "Based on his research and findings he'd like to install a feeding tube." Me: "What were his findings?" Nurse: "I cannot discuss that with you, you'll have to talk to the Dr." Me: "Can you fill her prescription in the meantime? Tomorrow is the last dose I have. I'd prefer to keep her on the meds until the Dr. and I discuss whatever it is he's discovered" Nurse: "No, I told you I can't", Me: "Can you talk with the Dr. to see?" Nurse: "I can try, but like I said I really don't think he's going to do it". Two hours later.... ring, ring... Me: "Hello", Nurse: "We have a sample packet of Prevacid ready for you to pick up".

"Research and findings... tube" I'm really upset about this. I have an appt tomorrow, but I think the nurse should've approached the situation a little differently! How about "The Dr. would like to try a new treatment method and I see you have an appt Friday, so you guys can discuss it then", instead of leaving me with this doomed feeling. They did blood work at the hospital two months ago; maybe something showed up there??? I hate not having enough information... I WANT TO KNOW NOW!!!