Recent content by emacsurak

  1. E

    Today's surgery

    So- We got 24 inch extension kits. This give you a little more length (only 12 inch comes with the button from the hospital). They have Mini One but are using the Mickey Extension kits. So we get about 3 feet from belly to when the tube needs to start making its way up the bag. Also, we were...
  2. E

    Today's surgery

    Sorry- Totally read your post as 7 months and not 7 years... skip the whole jammie foot crib thing :)
  3. E

    Today's surgery

    We are going through the same thing. After MONTHS of trying with ng feeds- our twin girls had g tubes placed two weeks ago. (they will be one in two weeks) It was a really hard decision and one that I am still second guessing- but they are happy and smiling- you wouldn't even know they had...
  4. E

    Night feeds - a couple questions:

    One other thing. We are switching to Nutren Junior because it is a supplement to feeding and not their primary food. It will only be given through the gtube overnight. For this reason, it is covered by our medical insurance. You may want to call your provider and ask them if the will cover a...
  5. E

    Night feeds - a couple questions:

    Our twins are on Pertzye. Talk with your dietician- but for their g-tube night feeds we give them double their normal dose of Pertzye at the start. We crush Viokace in the overnight bags to help with the breakdown. Then another single dose of Pertzye when they wake (we have to wait about a...
  6. E

    CF and salt

    Because of the salt loss... watch for dehydration in the summer time. Our docs told us that is how they first diagnosed CF as "something" It was really hot in New York and they had a bunch of kids with chronic lung problems come in to the ER with dehydration and really salty sweat! Gatorade...
  7. E

    Getting the cost of Mini One AMT coverered

    We have twin girls with CF. They are 11 months old and after battling with ng feeds for the last 10 months- they had Mini One tubes placed last week. Going into the surgery- the doctors told us that we would have 3 mini ones covered each year through insurance. But now as we are trying to...
  8. E

    Getting the cost of Mini One AMT coverered

    We have twin girls with CF. They are 11 months old and after battling with ng feeds for the last 10 months- they had Mini One tubes placed last week. Going into the surgery- the doctors told us that we would have 3 mini ones covered each year through insurance. But now as we are trying to...
  9. E

    Getting the cost of Mini One AMT coverered

    We have twin girls with CF. They are 11 months old and after battling with ng feeds for the last 10 months- they had Mini One tubes placed last week. Going into the surgery- the doctors told us that we would have 3 mini ones covered each year through insurance. But now as we are trying to get...
  10. E

    Overnight feeds of infants leading to SUPER WET mornings

    Hey all- I wasn't sure where to post this... thought "families" was my best bet. I have 9 month old twins who are on overnight feeds through an ng (soon to be g tube). Despite all efforts they wet the beds through their diaps EVERYDAY. WE use cloth diapers religiously with inserts at night-...
  11. E

    Mic-key/Mini versus G Tube?

    Thank you all for your support concerning the my girls possible g-tubes. I was wondering if anyone had any thoughts on Mic-key vs Mini vs traditional G Tube. My girls are army scooting and spending a lot of time on their bellies. I am worried about the pull out factor with all this tummy...
  12. E

    Where do you turn...

    Thanks! I will post and see if there is someone in a similar situation in the Family section- thank you for the offer of pen pal-ing. I may take you up on that! The girls are both homozygouys df508. They are identical- so what ever ones genes say- so does the other. I have been reading the...
  13. E

    When to consider a G Tube

    Thanks. It is soooo reassuring to hear that there are other parents out there who are feeling the same way I do. I feel like everything the clinic gives me to read is pro-g tube because that is what they are pushing. THANK YOU so much for your support and hope!
  14. E

    Where do you turn...

    My twins are 8 months old now. They were diagnosed at 4 weeks. It was a total shock- I had a screen when pregnant with my first and it was negative- guess it was a false negative. I think that we have a realistic view of CF. We have family living with it and doing well. I was going to...
  15. E

    When to consider a G Tube

    They are at the 10th percentile unadjusted for weight- BUT at the 50%ile for the height to weight ratio. IE they are short but proportionally fat enough for their small size. They are following a curve- just not as high on the curve as the dietician would like.
Top