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Tuesday, April 29, 2008
Friday, April 25, 2008
Back to square one
First off, here's a song I've been listening to ALOT lately. It helps me work through my feelings and lets me just have a good cry here and there: Listen to it if you can.
http://www.youtube.com/watch?v=JmIZOd5AXmQ&feature=PlayList&p=BB3AA39F3087D6D0&index=57
It's been a rough couple days in the Stanford Home. Emma has been unusually clingy, needy, and not feeling well. As you can imagine with 3 kids this makes things difficult. Throw in some medical problems and it makes for a very tired, and cranky mom, which leads to cranky kids, and cranky husband. Emma seems to be doing better today and while I have a raging migraine, the kids are happy go lucky and playing peacefully in their playroom.
Some good news. Caden is (mostly) registered for Kindergarten. All of a sudden I feel very old! LOL. We have to meet with the special education board to develop an IEP for him and then his registration will be complete. He'll be starting in July. We've also really been working with Caden on Math and reading. He tends to shut down if something is difficult or if he finds it not to be stimulating enough. A friend told me about a reading program at www.headsprout.com It's a video game online which teaches reading. Every 5 episodes or so the child should be able to read a new book which comes with the program. Caden just read a new book which you can see a video of here: http://youtube.com/watch?v=818__2GxlNc We are SO proud of him! On another note, we've been supplementing him with pediasure (one or 2 cans a day) and he seems to have gained a few ounces which is good since he hadn't really gained any weight in over a year. YAY Caden.
Lily is doing really well. For the most part she is always there to greet you with a smile. Soes have her devious side and can be quite moody but at times we find it really to be funny. She can also count to 10 (most of the time) in english AND spanish (Thanks Dora The Explorer). She's growing like a weed and already into 5T clothing (same size as Caden) and overall just doing VERY well. She's also very motherly and nurturing and enjoys helping take care of Emma and fetching supplies for me.
As for Emma, we're switching health insurance companies on May 1st. We have an appt. with a (supposedly) very good G.I. doctor through CHOC on May 2nd. We're hoping to get some second opinions and more testing and hopefully find out what we're truly dealing with. We had a follow up with her current g.i. Sean was able to take off work and come with me to help talk to the doctor and explain what's been going on. She weighed in at 25lbs. 3 ounces so the tube feedings have really helped kick start her weight gain. Which brings us to the mystery of why can she gain on continuous drip feeds but not by eating solid foods even though with solids she was taking in more calories. Her doctor went over alot of things with us and basically brought us back to square 1. She feels it's either Celiac or Cystic Fibrosis. The celiac blood tests all came back negative and the inital screening for CF did as well (albeit they only tested for 36 mutations out of almost 1,600 mutations, so i don't consider it truly ruled out). She wants her to have a sweat test for CF and wants to schedule an endoscopy with biopsy to check for celiacs. She's thinking if it's celiac maybe it just didn't show in blood and will in the biopsy. The good news is she's willing to test further now since things are still going on. The psuedo bad news we're switching insurances and hopefully our new doc can carry out these tests.
In the meantime we're conducting our own "experiment". We've put her on gluten-free foods and dropped her tube feedings dramatically. If it is celiac and an issue with gluten than a gluten free diet should resolve her diagestive issues. If it's not an issue with gluten then she won't gain weight (or lose some) will continue diarrhea, and nothing will be resolved. Since we feel like we're always waiting we figured it couldn't help to try. We'll give it a week and see what her body does. It's been 2 days. Yesterday, was a particularly BAD day. She woke up crying, and continued to cry, moan, and scream her way through the day. Her poor belly was very distended, and she seemed very weak. she finally pooped during her nap which resulted in explosive diarrhea. Her moaning and crying continued on through the evening and past bedtime. I was a very tired Mama. This morning she woke up and appears to be feeling a ton better, but still had another Diarrhea diaper. I really hope we can get to the bottom of what's going on with her. At this point we just want a diagnosis. We can manage a diagnosis, but can't manage the unknown. It's so difficult to watch her have good days and bad days and not know how to help her.
Sean and I are doing alright, despite it all. Both a bit drained, tired, and somewhat feeling down but managing. Hopefully, we can get a date night soon and have some time to reconnect.
And, I'll leave you with a few pictures of the past few weeks.
Well, blogger is being weird so, I'll have to add more pics later!
http://www.youtube.com/watch?v=JmIZOd5AXmQ&feature=PlayList&p=BB3AA39F3087D6D0&index=57
It's been a rough couple days in the Stanford Home. Emma has been unusually clingy, needy, and not feeling well. As you can imagine with 3 kids this makes things difficult. Throw in some medical problems and it makes for a very tired, and cranky mom, which leads to cranky kids, and cranky husband. Emma seems to be doing better today and while I have a raging migraine, the kids are happy go lucky and playing peacefully in their playroom.
Some good news. Caden is (mostly) registered for Kindergarten. All of a sudden I feel very old! LOL. We have to meet with the special education board to develop an IEP for him and then his registration will be complete. He'll be starting in July. We've also really been working with Caden on Math and reading. He tends to shut down if something is difficult or if he finds it not to be stimulating enough. A friend told me about a reading program at www.headsprout.com It's a video game online which teaches reading. Every 5 episodes or so the child should be able to read a new book which comes with the program. Caden just read a new book which you can see a video of here: http://youtube.com/watch?v=818__2GxlNc We are SO proud of him! On another note, we've been supplementing him with pediasure (one or 2 cans a day) and he seems to have gained a few ounces which is good since he hadn't really gained any weight in over a year. YAY Caden.
Lily is doing really well. For the most part she is always there to greet you with a smile. Soes have her devious side and can be quite moody but at times we find it really to be funny. She can also count to 10 (most of the time) in english AND spanish (Thanks Dora The Explorer). She's growing like a weed and already into 5T clothing (same size as Caden) and overall just doing VERY well. She's also very motherly and nurturing and enjoys helping take care of Emma and fetching supplies for me.
As for Emma, we're switching health insurance companies on May 1st. We have an appt. with a (supposedly) very good G.I. doctor through CHOC on May 2nd. We're hoping to get some second opinions and more testing and hopefully find out what we're truly dealing with. We had a follow up with her current g.i. Sean was able to take off work and come with me to help talk to the doctor and explain what's been going on. She weighed in at 25lbs. 3 ounces so the tube feedings have really helped kick start her weight gain. Which brings us to the mystery of why can she gain on continuous drip feeds but not by eating solid foods even though with solids she was taking in more calories. Her doctor went over alot of things with us and basically brought us back to square 1. She feels it's either Celiac or Cystic Fibrosis. The celiac blood tests all came back negative and the inital screening for CF did as well (albeit they only tested for 36 mutations out of almost 1,600 mutations, so i don't consider it truly ruled out). She wants her to have a sweat test for CF and wants to schedule an endoscopy with biopsy to check for celiacs. She's thinking if it's celiac maybe it just didn't show in blood and will in the biopsy. The good news is she's willing to test further now since things are still going on. The psuedo bad news we're switching insurances and hopefully our new doc can carry out these tests.
In the meantime we're conducting our own "experiment". We've put her on gluten-free foods and dropped her tube feedings dramatically. If it is celiac and an issue with gluten than a gluten free diet should resolve her diagestive issues. If it's not an issue with gluten then she won't gain weight (or lose some) will continue diarrhea, and nothing will be resolved. Since we feel like we're always waiting we figured it couldn't help to try. We'll give it a week and see what her body does. It's been 2 days. Yesterday, was a particularly BAD day. She woke up crying, and continued to cry, moan, and scream her way through the day. Her poor belly was very distended, and she seemed very weak. she finally pooped during her nap which resulted in explosive diarrhea. Her moaning and crying continued on through the evening and past bedtime. I was a very tired Mama. This morning she woke up and appears to be feeling a ton better, but still had another Diarrhea diaper. I really hope we can get to the bottom of what's going on with her. At this point we just want a diagnosis. We can manage a diagnosis, but can't manage the unknown. It's so difficult to watch her have good days and bad days and not know how to help her.
Sean and I are doing alright, despite it all. Both a bit drained, tired, and somewhat feeling down but managing. Hopefully, we can get a date night soon and have some time to reconnect.
And, I'll leave you with a few pictures of the past few weeks.
Well, blogger is being weird so, I'll have to add more pics later!
Thursday, April 10, 2008
G-Tube 101
Over the past few years I’ve had quite a few questions on exactly how the feeding tube works and how we attach it. Everyone we “know” (on message boards with children with special needs) seems to have a certain way of securing their child’s feeding tube which works for them. We’ve tried numerous ways but each has its own drawbacks. We keep coming back to this way though. Pros: It holds well, she can’t take it off. If her tube snags on something it pulls on the tape/skin first before pulling on her stoma. Cons: It takes a bit more time to set up, it is more expensive for supplies, and it takes up more space on her stomach. Below is a picture tutorial of how we get Emma’s feeds ready for the day and secured to her.
Here are all the supplies I have ready before I get started:
Before I do anything with her I fill the feed bag.
The bag is then “burped” (turned upside down so the bubbles float up and then primed a bit) to get out any air bubbles which will cause her pump to error and is also “primed” to get her formula through all of the tubing before being connected to her.
I then attach the extension (part which connects to the actual AMT button and also to her feed bag. The red “Christmas tree” part of the feed bag connects to the blue part of her extension. The opposite end of the extension connects to her button. I also prime the formula through her extension at this time.
Next, I put down a layer of hydrocolloid dressing (or Duoderm depending on which I have). This protects her very sensitive skin from multiple tape changes. We try to make this bottom dressing last 3-5 days to help protect her skin. We also switch which side of her g-tube this bottom dressing goes on with each dressing change.
I then connect her feedbag and extension to her button. This locks into her button by turning the extension clockwise.
After this I make a loop in the extension and place it on top of the hydrocolloid dressing. The loop helps the tube from being pulled out from the tape which I’ll put over it. I also use Hy-tape (the orange tape) to keep the loop in place.
After securing the tube I use a layer of Tegaderm, which is a very thin tape which goes over her tube and the bottom dressing to sandwich everything together. I’ve found using this method is the most secure.
After securing her tube I put the feed bag into the pump as shown and close the door and begin the feed.
Emma is an active toddler so we have the Zevex enteralite Infinity made especially for mobility. It is lightweight, does not have a drip chambers, and has few errors.
I put her feed bag and pump into her backpack and she wears her backpack all day. She loves her backpack and enjoys helping in care of her tube and always fastens her “seatbelt” across her chest to help evenly distribute her weight.
So, that’s the logistics of her feeding tube, what we do everyday and how it is worn. Overall, it takes about 10 minutes to get her set up.
Here are all the supplies I have ready before I get started:
Before I do anything with her I fill the feed bag.
The bag is then “burped” (turned upside down so the bubbles float up and then primed a bit) to get out any air bubbles which will cause her pump to error and is also “primed” to get her formula through all of the tubing before being connected to her.
I then attach the extension (part which connects to the actual AMT button and also to her feed bag. The red “Christmas tree” part of the feed bag connects to the blue part of her extension. The opposite end of the extension connects to her button. I also prime the formula through her extension at this time.
Next, I put down a layer of hydrocolloid dressing (or Duoderm depending on which I have). This protects her very sensitive skin from multiple tape changes. We try to make this bottom dressing last 3-5 days to help protect her skin. We also switch which side of her g-tube this bottom dressing goes on with each dressing change.
I then connect her feedbag and extension to her button. This locks into her button by turning the extension clockwise.
After this I make a loop in the extension and place it on top of the hydrocolloid dressing. The loop helps the tube from being pulled out from the tape which I’ll put over it. I also use Hy-tape (the orange tape) to keep the loop in place.
After securing the tube I use a layer of Tegaderm, which is a very thin tape which goes over her tube and the bottom dressing to sandwich everything together. I’ve found using this method is the most secure.
After securing her tube I put the feed bag into the pump as shown and close the door and begin the feed.
Emma is an active toddler so we have the Zevex enteralite Infinity made especially for mobility. It is lightweight, does not have a drip chambers, and has few errors.
I put her feed bag and pump into her backpack and she wears her backpack all day. She loves her backpack and enjoys helping in care of her tube and always fastens her “seatbelt” across her chest to help evenly distribute her weight.
So, that’s the logistics of her feeding tube, what we do everyday and how it is worn. Overall, it takes about 10 minutes to get her set up.
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