Little Miracle
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funny story
20 February 2009 - 9:53pm — Little MiracleSo I recently transferd my daughter's primary care from chla to choc and to day was her first oral evaluation to see if my husband and I can set stepingstones that may advance my daughter from g-tube feeding's to full bottle feed's well as my husband and I chek in the hospital one of the security gaurds stop'd us and questiond if we were carying a boomb! then my daughter's alarm on the ventalator went off.. omg that gaurd almost blew up! The man was calling for back up he didnt understand what a trach was or vent. Nor has he even sen an HT50.
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How it's done????
3 January 2009 - 12:41am — Little MiracleI have had my daughter home for about two weeks and I have no Idea how a single person with no home healthcare can jugle a vent dependent, oxygen dependent/ g-tube child 24/7!!! My husband and I had to rush our daughter to the e.r. because her fresh! 2 week old g-tub (micky) pop'd out completley with the baloon filled suprisingly My daughter didnt feel any pain.. by the time we got to the hospital the track was gone. The people at the hospital didnt even know what a vent was and it was terrible because our vent was on low batt and the pug in the e.r. didnt work ........by the time we got back to the e.r the nurse told my husband why didnt you bring the severity of your daughter's condition to our attention.. My husband said seriously thats what we been doing for the past 4 hr's you moron!! My main question is How do parents do it how do you get organized? how do you find time to spend as a family with out haveing to worry about your baby haveing a cynosis episode? How do you spend time with your signifigant other when you have no baby siter you can trust and your home healthcare agency has terrible review's so terrible that they have had children get brain damadge because they were not promptly trained on hand baging a trach paitent???I never used the agency but funny thing the hospital warned us about the agency... how do you even things out and find peace?
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| Title | Poster | Replies | Updated |
|---|---|---|---|
| Baby with smelly neck after trach... | Williamsmom | 8 | 1 year 9 weeks ago |
| funny story | Little Miracle | 2 | 1 year 14 weeks ago |
| Does anyone have an opinion on? | bdwhiddon | 6 | 1 year 22 weeks ago |
| How it's done???? | Little Miracle | 0 | 1 year 29 weeks ago |
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an opt.
Thank you so much for the info you provided for me G- tubes are terrible my daughter also has a mickey my husband and I eventually learned how to replace mickey's and trouble shoot any problems we may face in the future,
What was your child's diagnosis if you dont mind me asking? My daughter was an x- 25 weeker, 15 weeks early and stood in the Niccu 9 month's!
my husband and I have gone thru so much and we continue to fight for our baby every day in hopes some day our daughter will become a sucsessful decanulation
A little help
I just joined trachkids and haven't yet entered our story yet, but I saw your question and wanted to make a comment. Although my daughter is not on a vent at this time, she does have a trach and a g-tube (mickey), so I feel that I might be able to help a little bit. Our doctors and nurses told us that at some point the mickey would pop out or she may pull it out. They taught us how to change it ourselves and told us to keep several extras on hand. They also told us that if we did not feel comfortable or were unable to get the new mickey in to stick something in the hole (a straw, suction catheter, or something along those lines) until we were able to get to the hospital or doctor's office. This will keep the track open.
As far as the organization and finding peace with the situation, it comes with time. I know that doesn't help you much right now, but it's true. You tend to fall into a route of doing things. Doing little things like getting a storage cabinet specifically for medical supplies can help you to get organized. When we take my daughter somewhere we have a system of how we do things. It's not really something that we sat down and wrote out or anything, it just kind of happened over time.
My daughter was born 4 weeks early and stayed in the hospital for her first 42 days (or 6 1/2 weeks) of life. When we brought her home, we were very nervous and worried that we wouldn't be able to handle it. She came home on humified oxygen (which consisted of 2 machines and lots of tubing) and although it was not a vent, she did have to be connected 24/7. She had several other machines as well. She is now 10 months old and we are a lot more at ease and use to the way things should happen around our house.
Now, as far as the baby sitter issue. We don't really have a baby sitter, but we have trained my mother on how to take care of her when we absolutely have to go somewhere. So, pick someone that you know and trust (and of course is willing to take on the responsiblility) and train them on what they need to do to take care of your daughter. We do not have a home health nurse either. It's just us! Even if we did, I am not sure that I would be able to trust anyone else to take care of my little angel.
I know that this is long and drawn out, but I hope this helps. Please feel free to send me an e-mail if I can help you any further or visit our profile/story once I get it set up. Even if you just need to vent, one trach baby mommy to another shoot me an e-mail or whatever. We all need to vent to get things off our chest every once in a while.
I hope I have helped, at least a little bit.
Ellys Mommy,
Tonya
tboyd475@bellsouth.net