hello just wanted to introduce myself

arielle · #1 06-11-2010, 05:04 PM

my name is arielle and my boys both have a trach, they will be two years old on the first of july. they are ex 26 week preemies and have come very far. for the past two years they have mainly been in the hospital. i attempted to take them home a few times but they never stood more than a week at home without going back to the hospital and back on the vent. they both use oxygen and are finally home, today makes two weeks. its extremely stressful and nursing is horrible. i really want to go to school and i need a good day nurse for this to be possible. the nurse i have now seems to suffer from short term memory loss because she has not retained one bit of information that i have taught her. plus she says she works on a vent unit in the hospital yet she had no idea what a nebulizer treatment was. i just find it so sad and scary that we have to be trained before we take a children home< and i have two trached children and the nursing agency seems to think its okay to send someone with pretty much no experience. sorry im just very frustrated and i know this is probably one of the best places to come for support

bryantem · #2 06-11-2010, 05:55 PM

Hmm, your name looks familiar. I think I met you on another website awhile back. My name is Beth and my former trached baby was just decannulated in April. She is a former 28 weeker who will be 2 in October. She was trached for tracheomalacia, which is still there, just not severe enough to need the trach.

jamie · #3 06-11-2010, 06:12 PM

Arielle I am so sorry you have trouble with your nurses. My son is older and we have no nurse, but we do have a vent and I had to learn it all myself too. It does get easier, but I see your circumstances are much harder so I really hope you get good nurses soon.

landzsmum · #4 06-11-2010, 07:08 PM

Hi Arielle,
I know exactly how you feel and I only have one trached twin. Your profile lists new york. Are you in the city? We came home with a horrible nursing agency but have since switched to one with experienced nurses. Feel free to pm me.
Jamie is right, it does get easier. But I know how scary and stressful those first few weeks/months are at home.
-Andrea

ericnrosesmom · #5 06-11-2010, 09:06 PM

Hi, I'm Jen. My son Eric was trached due to frequent aspiration pneumonia and chronic lung problems. He was decanned this past April at age 3 1/2. Do you only have one nurse for both boys? One of our nurses had another casw where there trached, vented twins, and each had their own nurse. Not sure but I think it was agency policy.

RylanDakota · #6 06-11-2010, 10:55 PM

Hi, I'm Stephanie. I also have one trached twin. We just came home Tuesday and have had 2 call outs all ready out of the our 9 shifts. I am quite upset about it and our nurses are horrible and have no idea whats going on.

Alethia · #7 06-12-2010, 05:33 AM

Hi I'm Kate and I have a son with a trach and vent who is nearly 6 years old. We live in the UK so the system is very different. His carers are all provided by our children's hospital, and they are all specifically hired and trained to work with children with trachies and vents. I still have to show them how I prefer certain things to be done, and Angus' individual quirks, but their knowledge base is sound and they get re-trained and checked annually. On the whole I am very pleased with the service we get and consider us very fortunate to have a National Health Service.

alizesmom · #8 06-12-2010, 07:53 AM

Welcome Arielle. Nursing can often be the bane of our lives. You do have the right to tell your agency that the current nurse is not working out and ask for a replacement. You can also look into other agencies if you wish. As time goes on you will find yourself more comfortable with the equipment, the care and even the nursing. I hope you will be able to attain your goal of going to school in the near future. Karen

twintotwin · #9 06-12-2010, 08:22 AM

Hi Arielle- You're going to need to use more than one agency for your needs. I use 3 agencies to cover the hours I need for my boys.
I certainly don't want to be a bubble burster- but I'm not sure you'll be able to go to school anytime soon...unless you have an absolute reliable family member or 2 that will be there around the clock.
I haven't been able to do anything "extra-curricular" for 7.5 years so far...

Hang in there, it gets easier. But certainly not easy!

Jordansmommy · #10 06-12-2010, 08:35 AM

Hang in there...we have gone through many nurses...eventually you will find the right one to care for your twins! Just because they are nurses doesnt mean they know what they should! Its pretty said when us the parents have to show the nurses how to do things you would assume they should know how to do! We had a nurse who had her BSN which is above an RN and she had NO idea how to turn on the oxygen tank! Its pretty ridiculous! Just keep searching for nurses go through different agencies...if you dont like someone right off the bat dont hire them! Its overwhelming but go with your gut and if you have to go through 500 nurses until you find the right one then do it! The right one will come along! My son is one and we just found a really good reliable day and night nurse so keep your chin up and keep looking! Good luck and I wish you and your twins the best!