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The GI visit I forgot to write about

Raya saw her GI doctor last Wednesday. That morning when I told her we were going, she was SO excited. She loves her GI and loves to say her name too. We had to take Kaida with us this time and that always adds a little excitement. Of course the first thing she does when we walk through the door is kick off her flip flops. That kid does not like wearing shoes! Not sure what we're going to do when the flip flop weather ends. We did measurements and vitals. Raya makes me so proud with the way she handles all of that. She's definitely an old pro. :) I usually sit in the chair with her in my lap for vitals but she wanted to do it by herself this time. She looks so grown up sitting there all by herself with her little blood pressure cuff on! :) I couldn't help but smile. I'm so proud of my big girl. :) She was excited to see her doctor right up until she walked into the room. Raya had been playing and jabbering up a storm, not paying any attention to me and then the second her doctor walked into the room, she stopped talking and climbed up on my lap. Only for a quarter of a second and then she was off and running again but she didn't even say hi. If that's how she greets her favorite doctor, then I cringe to see how she'll do with the 3 appointments she has this week! We discussed the previous week's debacle with the AMT Mini One button coming out & being extremely difficult to get back in. I did what I felt was right in a difficult situation and we agreed that it was fortunate that the outcome was good in spite of the risks. We discussed what can be done differently should a similar situation arise again. I thought we were heading to the ER this afternoon because her tube got pulled out again. (I swear I'm really not careless with her, the water in the balloon was low and she caught the tubing on the IV pole) Thankfully it went in much more easily this time aside from her covering it with one hand and yelling, "No, Mommy! Don't hurt me!" She used to lay really still but she's afraid to have her tube put back in now. Anyway, her doctor was pleased with her growth over the last 2 months. She weighed 13.88kg (30 lbs, 9.6oz) and was 93.9 cm (36.85") tall. She gained about half a pound and grew 2cm since July. No wonder her pants are too short. :) She's had problems for a while now with intermittent bleeding from her stoma. Every few weeks, we have to put her on Carafate for a few days to clear up the irritation that's causing the bleeding. It hasn't been a big deal so far but there's never any rhyme or reason to the bleeding and we don't know if it's coming from inside her stomach or from the tract of her stoma. I worry that having an open source of bleeding like that is going to make her more susceptible to infections in her stoma. It hasn't caused problems yet but I'd rather keep it that way. She suggested putting Raya back on the twice daily dose of Prilosec to see if it helps. 5 days later, the bleeding has stopped but time will tell if the increased Prilosec had anything to do with it. Another reason we went back up on the Prilosec is because she's been spitting up again. It doesn't sound funny until you remember that she'll be 3 years old in November. She had also had a stuffy nose, been coughing in her sleep, and we could hear occasional reflux swallow/hiccups. If those things diminish once the Prilosec has been increased, then we know she's not ready for a lower dose. It's a bummer to have to go back up on it but for the time being, it's just what we need to do. It had been a while since Raya had gotten routine bloodwork done so she ordered labs too. Raya does about as good as anybody could ask of a 2 year old but she's also smart enough to know that it's going to hurt. She held totally still but cried the whole time. The girls got Dum Dums and stickers and we left. So back to the tube coming out today. I happened to come across a picture of another child's G tube stoma this attention right after I had put her tube back in and was shocked by how small and neat his stoma looked in comparison to Raya's. His stoma was obviously a hole and had nice, thin edges. Her scar tissue is so thick and raised that when there isn't a tube in, you can't even see a hole in the middle. I'm worried that the scar tissue is creating a dangerous situation for her. Up until last week, I had never worried about being able to get the tube back in. I had been able to let go of my fear that the people I've left her with wouldn't be able to get the tube back in if it came out, but now I'm not so sure. If someone that's timid about hurting her had to try and get the tube in, I don't think it would happen. So the point to my ramblings is that I've decided to consult the surgeon about doing an excision of her scar tissue. I'm not sure if it's something he could/would do on her, if it would even help, or if the benefits would outweigh the consequences. She's had such a healthy, problem-free stoma for over a year nowand I hate to mess with that but the risks of sending her to school when it's so difficult to get the tube back in are scary too. I have no idea when they'll be able to get her in but I think it's worth discussing.


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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

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Feeding Tube Terminology: G tube words

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Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …