Due to the fact that the pediatric surgeon is on vacation, the MICkey button isn't going to happen this week after all. It has been pushed back to 4-10-13. I think this will help us get used to the idea. In the meantime Pumpkin is trying other formulas (Peptide in 2 flavors) to see if she can drink them. If she can and she tolerates them, we'll put off the surgery to what time she can't do it orally. I think she needs this process to see for herself that she needs the surgery. Personally I wish we could stay on EEN for at least another month, and this will actually give her at least another week to try the formulas before food is added to the picture. She is over her flu and is not having any GI symptoms right now except stinky gas! Lol! (I'm not sure what that is about - maybe the Prebio in her Peptamen Junior, which we've been doing a little more than before since the medical equipment company couldn't get it before).
I'm frustrated with lack of a solid plan for reintroducing solids into her diet. Our dietician is used to doing this for allergy kids, but not Crohn's kids. Our GI doc said it would be okay to start with steak and potatoes, but our dietician said, "NO! Please don't do that!" Ugh! Now I don't have a plan. Still researching that. I'll have to search Cincy and Canadian children's hospital websites for recommendations...
By the way, Pumpkin has had two more doses of 6MP with NO SIDE EFFECTS! Yahoo! Also no reaction to her vaccines other than a little soreness either! :)
Saturday, March 30, 2013
Wednesday, March 27, 2013
Jae on schedule for MIC-key button
Poor Jae can't get a break. She has been recovering from illness after illness for the past 2 weeks. For 9 days she had a head cold. She was pretty much over it for one day, then the next night got the stomach flu with vomiting and diarrhea for 3 days. I thought she was finally over it last night, so we started her on her new medication, 6-MP. I guess she wasn't quite over it, because she had to stop her feeding during the night due to abdominal pain and nausea 
Last week we were pleasantly surprised to find out that Jae had gained 2 lbs. This week we find that she has lost them again.
Anyway, it is time for her NG tube to be removed. It seems pretty clear that the enteric nutrition is doing her good, even if she hasn't reached remission. She is only one week from finishing her 8 weeks of exclusive enteric nutrition, but will need to continue supplemental feeding. Today we decided that since replacing her NG tube each month isn't going to work well for her (won't do it without sedation), that the best option for her will be to get a MIC-key button. I think it is being scheduled for Monday for placement.
Oh, and poor Jaedyn got two vaccines today... pray she doesn't get seizures, we've often wondered if vaccines were a trigger for her seizures in the past... now I'm more convinced the seizures were triggered by malnutrition...
Last week we were pleasantly surprised to find out that Jae had gained 2 lbs. This week we find that she has lost them again.
Anyway, it is time for her NG tube to be removed. It seems pretty clear that the enteric nutrition is doing her good, even if she hasn't reached remission. She is only one week from finishing her 8 weeks of exclusive enteric nutrition, but will need to continue supplemental feeding. Today we decided that since replacing her NG tube each month isn't going to work well for her (won't do it without sedation), that the best option for her will be to get a MIC-key button. I think it is being scheduled for Monday for placement.
Oh, and poor Jaedyn got two vaccines today... pray she doesn't get seizures, we've often wondered if vaccines were a trigger for her seizures in the past... now I'm more convinced the seizures were triggered by malnutrition...
Thursday, March 14, 2013
Checked in with Ped GI
Yesterday we drove to Anchorage and met with Pumpkin's GI doc. She was pleased with how she is doing. She said that Pumpkin has come a long way since the last time she saw her. On that visit Pumpkin weighed about 68-70 lbs and was not diagnosed yet. Now Pumpkin weighs 73 lbs and has an NG tube - which was a big step for her.
Pumpkin is on her 5th week of enteral nutrition, the second week using the NG tube with Peptamen Junior. She is doing much better right now - less abdominal pain, no diarrhea for about a week. She is having joint pain in her right wrist.
The doctor is increasing her feed to 8 cans of P.J. per day. Hopefully she'll start gaining again. She also discussed starting 6MP as soon as Pumpkin is over her current cold. Poor Pumpkin has a ton of nasal drainage and evening fevers. No fun with an NG tube. In 3 weeks she'll be able to start increasing her oral intake of food. Pumpkin told her that her favorite food is steak and potatoes, and so the doctor has okayed her to start with that. :). Really? I would have thought something soft, but she said it's good to start with a protein. I hope her gut is up to that after a liquid diet for 8 weeks!
The doc also showed Pumpkin a Mickey button (and a Minnie button). These are small tubes that go through the skin right into the stomach. Unless Pumpkin can accept that she needs to learn to insert the NG tube manually, she may need to go to another method to get her supplemental nutrition. The NG tube has to be changed every 4-5 weeks. The Mickey would only have to be changed every 3 months, and that can be done right at home. It's really quite small. I think it would have its advantages.
Overall, I think we're at a good place right now. Pumpkin is gaining, albeit slowly. She has accepted the NG tube and has done two weeks of it already. She even over at a friend's house spending the night tonight! She brought all of her formula and syringes with her to start her feeding and refill it tonight with her. Now that is a real friend who can look over this and invite her to spend time with her anyway.
Pumpkin is on her 5th week of enteral nutrition, the second week using the NG tube with Peptamen Junior. She is doing much better right now - less abdominal pain, no diarrhea for about a week. She is having joint pain in her right wrist.
The doctor is increasing her feed to 8 cans of P.J. per day. Hopefully she'll start gaining again. She also discussed starting 6MP as soon as Pumpkin is over her current cold. Poor Pumpkin has a ton of nasal drainage and evening fevers. No fun with an NG tube. In 3 weeks she'll be able to start increasing her oral intake of food. Pumpkin told her that her favorite food is steak and potatoes, and so the doctor has okayed her to start with that. :). Really? I would have thought something soft, but she said it's good to start with a protein. I hope her gut is up to that after a liquid diet for 8 weeks!
The doc also showed Pumpkin a Mickey button (and a Minnie button). These are small tubes that go through the skin right into the stomach. Unless Pumpkin can accept that she needs to learn to insert the NG tube manually, she may need to go to another method to get her supplemental nutrition. The NG tube has to be changed every 4-5 weeks. The Mickey would only have to be changed every 3 months, and that can be done right at home. It's really quite small. I think it would have its advantages.
Overall, I think we're at a good place right now. Pumpkin is gaining, albeit slowly. She has accepted the NG tube and has done two weeks of it already. She even over at a friend's house spending the night tonight! She brought all of her formula and syringes with her to start her feeding and refill it tonight with her. Now that is a real friend who can look over this and invite her to spend time with her anyway.
Tuesday, March 5, 2013
NG tube tape art
My daughter is very creative. Each day she colors the Hyfix tape that she uses to attach the tube to her cheek. I talked her into letting me get a picture of it today. She has had characters and creatures from her Legend of Zelda Wii game, a sword, and today a hummingbird. I hope to get more pics to add to this.
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| The Hyfix is white and all the drawing and color is with colored pencils. |
Friday, March 1, 2013
Sore throat
We took Pumpkin to the doctor on Wednesday for her sore throat. It seemed to be more than just an irritating tube. The doc thought she might be getting a virus, and that made sense. She took a culture swab of her throat. Yesterday I took Pumpkin and her older sister to get haircuts. It was good for Pumpkin to get out of the house. Her haircut looks super cute.
Today she was having a lot of melt downs related to schoolwork she didn't want to have, having a tube and just not having a good day.
After lunch Pumpkins pediatrician called to tell us that the throat swab came back positive for Group A strep. Since we're trying to build up her gut flora with the EEN, we opted to give her a shot of bicillin in lieu of oral antibiotics. Although she is only 72 lbs, she had to have the full adult dose. This was not music to her ears when I had to call Tim and Pumpkin and tell them. She had been getting better without the antibiotic, but I think she may be a chronic carrier. Maybe this will stop the viscious cycle. Three MAs came into her exam room to give her the shots. One half of the dose for each leg. The third MA didn't end up being needed. Pumpkin said it hurt a lot though. :(
Today she was having a lot of melt downs related to schoolwork she didn't want to have, having a tube and just not having a good day.
After lunch Pumpkins pediatrician called to tell us that the throat swab came back positive for Group A strep. Since we're trying to build up her gut flora with the EEN, we opted to give her a shot of bicillin in lieu of oral antibiotics. Although she is only 72 lbs, she had to have the full adult dose. This was not music to her ears when I had to call Tim and Pumpkin and tell them. She had been getting better without the antibiotic, but I think she may be a chronic carrier. Maybe this will stop the viscious cycle. Three MAs came into her exam room to give her the shots. One half of the dose for each leg. The third MA didn't end up being needed. Pumpkin said it hurt a lot though. :(
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